what is a case study in bioethics

Case Studies

Case study discussion.

Below is a list of the case study articles that have been published in NIB , each with keywords, a set of discussion questions, and further resources. To search page contents with keywords, select "Control-F" from a PC, or "Command-F" from a Mac.

• Accommodating Religious Beliefs in the ICU: A Narrative Account of a Disputed Death
• When Ethics Consultation and Courts Collide: A Case of Compelled Treatment of a Mature Minor
• Advance Directives, Preemptive Suicide, and Emergency Medicine Decision Making
• Healing the Physician’s Story: A Case of Narrative Medicine and End-of-Life Care
• The Efficacy of Ethics Discernment in the Organizational Context: The Case of Post-Offer Nicotine Screening
• Can We Talk About Sex?
• Should We Tell Annie?: Preparing for Death at the Intersection of Parental Authority and Adolescent Autonomy
• A Case of Deceptive Mastectomy
• Do Everything
• Responding to the Refusal of Care in the Emergency Department
• I Don’t Know Why I Called You
• Undocumented and at the End of Life
• Dax’s Case Redux: When Comes the End of the Day?
• Desperately Seeking a Surrogate— For a Patient Lacking Decision-Making Capacity
• What to Say When: Responding to a Suicide Attempt in the Acute Care Setting
• Conversation and the Jehovah’s Witness Dying From Blood Loss
• Caregivers’ Role in Maternal-Fetal Conflict
• The Surgeon as Stakeholder: Making the Case Not to Operate
• The Enduring Case
• Military Health Care Dilemmas and Genetic Discrimination: A Family’s Experience with Whole Exome Sequencing
• Conflicting Values: A Case Study in Patient Choice and Caregiver Perspectives
• Ethical Dilemmas Relating to the Management of a Newborn with Down Syndrome and Severe Congenital Heart Disease in a Resource-Poor Setting
• System Failure: No Surgeon To Be Found
• Ethical Challenges in the Care of the Inpatient with Morbid Obesity
• A Life Below the Threshold? Examining Conflict Between Ethical Principles and Parental Values in Neonatal Treatment Decision Making
• The Clinical Bioethicist’s Role: Should We Aim to Relieve Suffering?
• To Enroll or Not to Enroll?: A Researcher Struggles with the Decision to Involve Study Participants in a Clinical Trial That Could Save Their Lives
• Sometimes Those Hoofbeats Are Zebras: A Narrative Analysis
• A Jehovah’s Witness Adolescent in the Labor and Delivery Unit: Should Patient and Parental Refusals of Blood Transfusions for Adolescents Be Honored?
• Reframing Medical Appropriateness: A Case Study Concerning the Use of Life-Sustaining Technologies for a Patient With Profoundly Diminished Quality of Life
• "We Didn't Consent to This"
• Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online
• A Personal Narrative on Living and Dealing with Psychiatric Symptoms after DBS Surgery
• The Will Reconsidered: Hard Choices in Living Organ Donation
• Malleable Transplant Criteria: At What Cost?
• Responding to Requests for Aid-in-Dying: Rethinking the Role of Conscience
• Getting to the Heart of the Matter: Navigating Narrative Intersections in Ethics Consultation
• Speaking for Our Father
• Forcible Amputation in Delusional Patients: A Narrative Analysis of Decisional Capacity
• A Health Care Systems Approach to Improving Care for Seriously Ill Patients
• An Ethics of Unknowing: Discerning Ethical Patient-Provider Interactions in Clinical Decision-Making
• How Should Physicians Manage Neuro-prognosis with ECPR?
• The Ethics of Choosing a Surrogate Decision Maker When Equal-Priority Surrogates Disagree
• A Gay Epidemiologist and the DC Commission of Public Health AIDS Advisory Committee
• Shared Decision-Making in Palliative Care: A Maternalistic Approach
• Phantom Physicians and Medical Catfishing: A Narrative Ethics Approach to Ghost Surgery
• It Takes Time to Let Go
• An American’s Experience with End-of-Life Care in Japan: Comparing Brain Death, Limiting and Withdrawing Life-Prolonging Interventions, and Healthcare Ethics Consultation Practices in Japan and the United States
• The Sword of King Solomon
• Appreciating the Dynamicity of Values at the End of Life: A Psychological and Ethical Analysis
• Serendipity and Social Justice: How Someone with a Physical Disability Succeeds in Clinical Bioethics
• The Right to Be Childfree
• Undisclosed Placebo Trials in Clinical Practice: Undercover Beneficence or Unwarranted Deception?
• What Do We Owe to Patients Who Leave Against Medical Advice? The Ethics of AMA Discharges?
•  "Jehovah's Witnesses and the Normative Function of Indirect Consent"
• "Parental Refusals of Blood Transfusions from COVID-19 Vaccinated Donors for Children Needing Cardiac Surgery"
• "Withdrawing Life Support After Attempted Suicide: A Case Study and Review of Ethical Consideration"

1. Accommodating Religious Beliefs in the ICU: A Narrative Account of a Disputed Death

Martin L. Smith, Anne Lederman Flamm

Abstract: Despite widespread acceptance in the United States of neurological criteria to determine death, clinicians encounter families who object, often on religious grounds, to the categorization of their loved ones as “brain dead.” The concept of “reasonable accommodation” of objections to brain death, promulgated in both state statutes and the bioethics literature, suggests the possibility of compromise between the family’s deeply held beliefs and the legal, professional and moral values otherwise directing clinicians to withdraw medical interventions. Relying on narrative to convey the experience of a family and clinical caregivers embroiled in this complex dilemma, the case analyzed here explores the practical challenges and moral ambiguities presented by the concept of reasonable accommodation. Clarifying the term’s meaning and boundaries, and identifying guidelines for its clinical implementation, could help to reduce uncertainty for both health care professionals and families and, thereby, the incremental moral distress such uncertainty creates.

Keywords: Brain death, clinical ethics, ethics consultation, reasonable accommodation, religious conflict

Link to Case on MUSE

Reflection Questions:

• How might have the nurses’ and physicians’ initial frank commentary about Sarah’s condition affected the family’s interpretation of the clinicians’ opinions later on in the care process?
• In what ways might the new hospital have provided support to Sarah’s family in order to avoid the religion vs. medicine standoff that eventually developed?
• How much patience are physicians obligated to have with family members who extensively question the medical decision-making process? Was the hospital staff correct in labeling Rebekah as “manipulative”?
• Is it ethically appropriate for financial considerations to affect the family’s decision-making? Why or why not? To what extent should the healthcare team discuss the financial impact of decisions with families?

Web Resources:

• New York State Department of Health Guidelines for Determining Brain Death. (2011). Retrieved from: http://www.health.ny.gov/professionals/hospital_administrator/letters/2011/brain_death_guidelines.pdf
• Olick, RS, Braun, EA, and Potash, J. (2009). Accommodating Religious and Moral Objections to Neurological Death. The Journal of Clinical Ethics. Retrieved from: http://www.upstate.edu/bioethics/pdf/faculty/olick_accommodating-religious-and-moral-objections-to-neurological-death.pdf
• Breitowitz, YA. Jewish Medical Ethics: The Brain Death Controversy in Jewish Law. Jewish Virtual Library. Retrieved from: https://www.jewishvirtuallibrary.org/jsource/Judaism/braindead.html

2. When Ethics Consultation and Courts Collide: A Case of Compelled Treatment of a Mature Minor

Jeffrey P. Spike

Abstract: A fourteen year old is diagnosed with aplastic anemia. The teen and his parents are Jehovah’s Witnesses. An ethics consult is called on the day of admission by an ethically sophisticated social worker and attending. The patient and his parents see this diagnosis as “a test of their faith.” The ethical analysis focuses on the mature minor doctrine, i.e. whether the teen has the capacity to make this decision. The hospital chooses to take the case to court, with a result that is at odds with the ethics consultation recommendations. Ethics was never deposed or otherwise invited to be involved with the hearing. Thus the larger question of the relation of ethics and law was brought into stark relief.

Keywords: Adolescent, Capacity, Child Neglect, Decision-making Capacity, Ethics Consultation, Informed Consent, Jehovah’s Witnesses, Mature Minor, Religion, Religious Belief, Right to Refuse Treatment, Teen, Teenager

• What is the relationship between law and ethics? When they conflict, which should prevail?
• At one point, the author of this case study says, of trying to convince his young patient of the benefit of treatment: “…but that seemed coercive. In fact, far too many patients act out of fear and accept treatment that has virtually no choice of benefit.” In this case, where Luke would have greatly benefitted from treatment, where is the line to be drawn between thoroughly informing him and coercing him?
• Are there ever circumstances where it might be disadvantageous to have an ethics consultation?
• Anderson & Associates, P.C. (2015). Illinois Recognizes the “Mature Minor Doctrine” in Some Cases. Retrieved from: http://www.andersondivorcelawchicago.com/chicagodivorceattorney/2015/01/29/illinois-mature-minor-doctrine-states/

Pauley, M. (2011). National Health Care Decisions Day, Jehovah’s Witnesses & Mature Minors. Marquette University Law School Faculty Blog. Retrieved from: http://law.marquette.edu/facultyblog/2011/04/14/national-health-care-decisions-day-jehovahs-witnesses-mature-minors/

• Jehovah’s Witnesses: The Surgical/Ethical Challenge. (1981). JW.org. Retrieved from: http://www.jw.org/en/publications/books/blood/jehovahs-witnesses-the-surgical-ethical-challenge/

3. Advance Directives, Preemptive Suicide, and Emergency Medicine Decision Making

Richard L. Heinrich, Marshall T. Morgan, Steven J. Rottman

Abstract: As the United States population ages, there is a growing group of aging, elderly, individuals who may consider "preemptive suicide"(Prado, 1998). Healthy aging patients who preemptively attempt to end their life by suicide and who have clearly expressed a desire not to have life -sustaining treatment present a clinical and public policy challenge. We describe the clinical, ethical, and medical-legal decision making issues that were raised in such a case that presented to an academic emergency department. We also review and evaluate a decision making process that emergency physicians confront when faced with such a challenging and unusual situation.

Keywords: Aging, Autonomy, Advance Directives, Emergency Department, Preemptive Suicide

• Can we rely on the perspective of a patient to trust that a logical decision about preemptive suicide is being made?
• In this case, the family supported the patient’s decision, and thus gave it more credence. When the patient and family disagree, which view should prevail?
• What could the medical team have done prior to providing treatment in order to clarify their patient’s DNR wishes?
• Suicide is currently illegal in the United States. Does the fact that it is illegal mean that it is wrong? Is there an ethical right to suicide, despite the fact that it is illegal?
• Gabbatt, A. (2009). Doctors acted legally in ‘living will’ suicide case. The Guardian. Retrieved from: http://www.theguardian.com/society/2009/oct/01/living-will-suicide-legal
• Tolchin, M. (1989). When long life is too much: suicide rises among elderly. The New York Times. Retrieved from: http://www.nytimes.com/1989/07/19/us/when-long-life-is-too-much-suicide-rises-among-elderly.html?pagewanted=all&src=pm
• Appleby, J. (2014). ‘Prophylactic’ Suicide. The New York Times, Sunday Review. Retrieved from: http://www.nytimes.com/2014/11/16/opinion/sunday/prophylactic-suicide.html

4. Healing the Physician’s Story: A Case of Narrative Medicine and End-of-Life Care

Lori A. Roscoe

Abstract: Telling stories after a loved one’s death helps surviving family members to find meaning in the experience and share perceptions about whether the death was consistent with the deceased person’s values and preferences. Opportunities for physicians to evaluate the experience of a patient’s death and to expose the ethical concerns that care for the dying often raises are rare. Narrative medicine is a theoretical perspective that provides tools to extend the benefits of storytelling and narrative sense–making to physicians. This case study describes narrative writing workshops attended by physicians who care for dying patients. The narratives created revealed the physicians’ concerns about ethics and their emotional connection with patients. This case study demonstrates that even one–time reflective writing workshops might create important opportunities for physicians to evaluate their experiences with dying patients and families.

Keywords: Death and Dying, End–of–Life Issues, Healthcare Professionals, Narrative Inquiry, Stories, Storytelling

• This piece extensively discusses the effects that narrative medicine can have for a practicing physician. What potential effects can it have on the other side of the doctor-patient interaction?
• What does the Japanese physician’s story suggest about the role that culture plays in the doctor-patient experience?
• Is it possible for a physician to be truly empathetic with his or her patients? Why or why not?
• Should medical schools across the country include narrative medicine in their curriculum? Why or why not?
• Chen, PW. (2008). Stories in the Service of Making a Better Doctor. The New York Times. Retrieved from: http://www.nytimes.com/2008/10/24/health/chen10-23.html?pagewanted=all
• Geisler, SL. (2006). The Value of Narrative Ethics to Medicine. The Journal of Physician Assistant Education. Retrieved from: http://www2.paeaonline.org/index.php?ht=action/GetDocumentAction/i/25232

5. The Efficacy of Ethics Discernment in the Organizational Context: The Case of Post-Offer Nicotine Screening

David M. Belde

Abstract: This article examines the efficacy of an ethics discernment process in the organizational context, a practice referred to in the paper as "mission due diligence." This type of ethics discernment is a structured process intended to awaken the ethical concerns that a particular issue raises within moral agents and to give voice, directly and indirectly, to those who will be impacted by, and responsible for, strategic decision-making. The efficacy of this particular ethics discernment practice is contingent upon several realities, including, but not limited to 1) the timing in which it is undertaken, 2) the degree of importance and relevance attributed to it, and 3) the skills of the person leading it. This case report examines how this process was used to highlight and address the ethical issues related to a new hiring policy, namely, a mandatory nicotine screening test for prospective employees in the healthcare context. Framed by the Bon Secours Virginia Health System hiring process, the author explores the importance of diligently focusing on ethical considerations in the organizational realm while still maintaining true to the virtues of the network.

Keywords: Ethics Discernment, Nicotine Screening, Organizational Ethics

• The author says, “Virtually all organizational ethics programs have to grapple with their overall importance and relevance within an organization.” How much authority should an ethics program within a hospital be afforded?
• If an employer can show sufficient empirical results for why a drug test is necessary, is it warranted? Do the sufficient reasons have to be related to the patients’ best interests?
• What are the different ways that Catholicism affects the ethical considerations in this case? What role does religion play in ethical consultations in general?
• Why does the author say balancing advocacy and inquiry are so important?
• Tucker, M & Salazar, L. (2014). Cotinine testing may violate the American with Disabilities Act (ADA), the ADA Amendments Act (ADAAA), and state laws. Wells Fargo Insights. Retrieved from: https://wfis.wellsfargo.com/insights/clientadvisories/pages/cotininetestingmayviolateadaandotherlaws.aspx
• Our Values. Bons Secours Health System. Retrieved from: http://hso.bonsecours.com/about-us-our-mission-our-values.html
• Framework for Ethical Discernment. (2014). The Taylor University Center for Ethics. Retrieved from: http://ethics.taylor.edu/framework-for-ethical-discernment/

6. Can We Talk About Sex?

Mindy B. Statter

Abstract: A three–year–old female undergoes elective inguinal hernia repair and unexpectedly is found to have testes in the hernia sacs. A recommendation is made not to disclose the patient’s genotype to her mother. This case study addresses the ethical conflict of whether to disclose the patient’s male genotype to the parent that has been raising the child as female.

Keywords: Autonomy, Beneficence, Complete Androgen Insensitivity Syndrome, Disclosure, Informed Consent, Intersex, Nonmaleficence

• In what—if any—circumstances is it ethically acceptable to withhold medical information about a child from the primary caretaker?
• Now that disclosure of a CAIS diagnosis is mandatory, what responsibility would a parent potentially have to override a doctor’s recommendations for gender maintenance?
• This case highlights the ethical risks and potential consequences later in life of not disclosing a patient’s CAIS diagnosis and treatment. Conversely, what would the consequences be for disclosing?
• Ignoring the medical precedents set now, do you believe the doctor in this case should have felt remorse for not disclosing the full nature of the girl’s condition to her mother? Would her mother have been equipped to handle that knowledge at that time?
• Dreger, AD. (1998). “Ambiguous Sex”—or Ambivalent Medicine? The Hastings Center Report. Retrieved from: http://www.isna.org/articles/ambivalent_medicine
• Intersex Conditions, Human Diversity Resources. UConn Health Center. http://uchc.libguides.com/humandiversity/intersex
• Georgiann Davis. "Normalizing Intersex: The Transformative Power of Stories." Narrative Inquiry in Bioethics 5.2 (2015): 87-89. Project MUSE. Web. 8 Dec. 2015

7. Should We Tell Annie?: Preparing for Death at the Intersection of Parental Authority and Adolescent Autonomy

Erica K. Salter

Abstract: This case analysis examines the pediatric clinical ethics issues of adolescent autonomy and parental authority in medical decision–making. The case involves a dying adolescent whose parents request that the medical team withhold diagnosis and prognosis information from the patient. The analysis engages two related ethical questions: Should Annie be given information about her medical condition? And, who is the proper decision–maker in Annie’s case? Ultimately, four practical recommendations are offered.

Keywords: Adolescent, Decision-making Capacity, End of Life Care, Mature Minor, Parental Consent

• At what age do teens develop the ability to make autonomous decisions for themselves? What factors unique to adolescence might enhance or detract from this ability?
• What factors should be considered in deciding whether an adolescent should be given decision-making authority? Why?
• Is it ever appropriate for medical practitioners to lie to a child (or actively conceal the truth from a child)? Why or why not?
• Was it appropriate of the new attending doctor to call the palliative care physician? How could that miscommunication have been prevented?
• Hill, JB. (2012). Medical Decision Making by and on Behalf of Adolescents: Reconsidering First Principles. Faculty Publications. Retrieved from: http://scholarlycommons.law.case.edu/cgi/viewcontent.cgi?article=1081&context=faculty_publications
• Leonard, K. (2015). Case Sparks Debate About Teen Decision Making in Health. U.S. News and World Report. Retrieved from: http://www.usnews.com/news/articles/2015/01/22/case-sparks-debate-about-teen-decision-making-in-health

8. A Case of Deceptive Mastectomy

Rebecca Volpe, Maria Baker, George F. Blackall, Gordon Kauffman, Michael J. Green

Abstract: This paper poses the question, “what are providers’ obligations to patients who lie?” This question is explored through the lens of a specific case: a 26–year–old woman who requests prophylactic bilateral mastectomy with reconstruction reports a significant and dramatic family history, but does not want to undergo genetic testing. Using a conversational–style discussion, the case is explored by a breast surgeon, genetic counselor/medical geneticist, clinical psychologist, chair of a hospital ethics committee and director of a clinical ethics consultation service.

Keywords: Clinical Ethics, Deceit, Lying, Provider/Patient Relationship, Providers’ Obligations

• Do you believe that the patient-doctor relationship should be reciprocal? Does the Hippocratic Oath mandate that doctors uphold their duties regardless of patient behavior?
• This case study asks us to consider typical signals that the doctors relied on when initially deciding whether or not to trust the patient. They cite qualities like her attractiveness, her maturity, and her husband’s support in order to explain their initial trust. Should they have been more skeptical in the beginning? Why were they so willing to believe the patient’s story at face value?
• Aside from the guilt that the surgeon himself would likely have felt, what might have been some potential consequences for the ethics team and hospital in general if the surgery had been successfully performed? What if it had gone badly?
• Polta, A. (2014). Lying to the Doctor. Center for Advancing Health, Prepared Patient Blog. Retrieved from: http://www.cfah.org/blog/2014/lying-to-the-doctor
• Ludwig, M & Burke, W. (2013). Physician-Patient Relationship. Ethics in Medicine, University of Washington School of Medicine. Retrieved from: http://depts.washington.edu/bioethx/topics/physpt.html
• Observer Staff. (2000). What Should Plastic Surgeons Do When Crazy Patients Demand Work? Observer. Retrieved from: http://observer.com/2000/07/what-should-plastic-surgeons-do-when-crazy-patients-demand-work/

9. Do Everything

H. Rex Greene

Abstract: A 57–year–old with an incurable cancer suffered an abdominal catastrophe, putting him in the ICU, comatose with no chance of survival. His attending oncologist had only met him once and had no knowledge of his goals of care. Lacking an advance directive the staff turned to his family, who said, “Do everything.” This loaded statement was thought to be a demand for futile care even though it ultimately proved a reflection of their emotional response to a terrible, unanticipated event, not an irrational demand for useless care. A sympathetic exploration of the patient’s goals and expectations with his family using Buckman’s SPIKES format disclosed that their major concern was that he not die on his wife’s birthday. The family agreed to withdraw him from ventilator support the following day. Unraveling a medical conflict requires a sensitive process of shared decision–making based on a transparent process of clinical reasoning that synthesizes patient and family values with medical knowledge and ethical duties. Properly done, the outcome usually is a satisfactory experience for all concerned.

Keywords: Abandonment, Advance directives, Catastrophic Illness, Clinical Reasoning, Conflict Resolution, Decisional Capacity, Do Everything, Futility, Paternalism, Shared Decision Making, SPIKES, Substituted Judgment

• This case explains that responding appropriately to a request to “do everything” requires doctors to ensure that patients’ families “know the medical facts, delivered in a kind, caring fashion.” Sometimes, it can take many meetings over several days for the family to absorb the medical facts. How should decisions be made in the meantime?
• The conclusion of this case seems to reaffirm that emotion is more important than reason when approaching difficult conversations with patients’ families. Should emotion-based education and empathy training be offered in the modern medical school curriculum? Is it even possible to train physicians to be more emotionally intelligent?
• Why is the establishment of the goal of treatment so important to the unity of a patient, their family, and their doctor? What are the barriers to establishing goals of care?
• Baile, WF. et al. (2000). SPIKES—A Six Step Protocol for Delivering Bad News: Application to the Patient with Cancer. The Oncologist. Retrieved from: http://theoncologist.alphamedpress.org/content/5/4/302.full
• Medical Futility. (2007). ACOG Committee Opinion No. 362. American College of Obstetricians and Gynecologists. Obstet Gynecol. Retrieved from: http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Ethics/Medical-Futility
• Enhancing Communication and Coordination of Care. (2013). Cardinal Glennon. Retrieved from: http://www.cardinalglennon.com/Documents/Forms/AllItems.aspx?RootFolder=http%3a%2f%2fwww%2ecardinalglennon%2ecom%2fDocuments%2femergency-medicine&FolderCTID=0x0120000161C93D9B68B34BA6E74A98204CE2A1

10. Responding to the Refusal of Care in the Emergency Department

Jennifer Nelson, Arvind Venkat, Moira Davenport

Abstract: The emergency department (ED) serves as the primary gateway for acute care and the source of health care of last resort. Emergency physicians are commonly expected to rapidly assess and treat patients with a variety of life–threatening conditions. However, patients do refuse recommended therapy, even when the consequences are significant morbidity and even mortality. This raises the ethical dilemma of how emergency physicians and ED staff can rapidly determine whether patient refusal of treatment recommendations is based on intact decision–making capacity and how to respond in an appropriate manner when the declining of necessary care by the patient is lacking a basis in informed judgment. This article presents a case that illustrates the ethical tensions raised by the refusal of life–sustaining care in the ED and how such situations can be approached in an ethically appropriate manner.

Keywords: Decision–making Capacity, Emergency Department, Emergency Physician, Informed Consent, Treatment Refusal

• Does coming to the Emergency Department constitute implied consent to treatment? Why would a patient come to the ED if not to receive potentially life-sustaining treatments at a physician’s recommendation?
• If it is evident that a patient lacks decision-making capacity, is it paternalistic to administer life-saving treatment even if the patient refuses?
• In this case, would it be ethically appropriate for the physicians to consult the patient’s family, in order to bring in one more agent of authority?
• Cooper, S. (2010). Taking No for an Answer—Refusal of Life-Sustaining Treatment. AMA Journal of Ethics/Virtual Mentor. Retrieved from: http://journalofethics.ama-assn.org/2010/06/ccas2-1006.html
• ACEP Code of Ethics for Emergency Physicians. (2008). Retrieved from: https://www.acep.org/Clinical---Practice-Management/Code-of-Ethics-for-Emergency-Physicians/

11. I Don’t Know Why I Called You

Jeffrey S. Farroni, Colleen M. Gallagher

Abstract: This case study details a request from a patient family member who calls our service without an articulated ethical dilemma. The issue that arose involved the conflict between continuing further medical interventions versus transitioning to supportive or palliative care and transferring the patient home. Beyond the resolution of the ethical dilemma, this narrative illustrates an approach to ethics consultation that seeks practical resolution of ethical dilemmas in alignment with patient goals and values. Importantly, the family’s suffering is addressed through a relationship driven, humanistic approach that incorporates elements of compassion, empathy and dialog.

Keywords: End of life, Empathy, Relationships, Clinical Ethics

• How can healthcare providers and ethicists strike a balanced middle-ground between being too detached and too empathetic? Which side of this split should they err on? Why?
• In this case, how did the patient’s family’s expectations influence the decision-making of the ethicist and the doctors?
• How can an ethicist’s varied background bring new knowledge and insight to a collaborative ethical deliberation?
• Shelton, WN & White, BD. (2015). Realistic Goals and Expectations for Clinical Ethics Consultations: We Should Not Overstate What We Can Deliver. The American Journal of Bioethics. Retrieved from: http://www.tandfonline.com/doi/pdf/10.1080/15265161.2014.974773
• American Society for Bioethics and Humanities Clinical Ethics Task Force. Improving Competence in Clinical Ethics Consultation: A Learner’s Guide. Retrieved from: http://www-3.unipv.it/centrodibioetica/resources/Improving_Competence_in_Ethics.pdf

12. Undocumented and at the End of Life

Annette Mendola

Abstract: Three of the most contentious issues in contemporary American society—allocation of medical resources, end of life care, and immigration—converge when undocumented immigrant patients are facing the terminal phase of chronic illness. The lack of consistent, pragmatic policy in each of these spheres leaves us with little guidance for how to advocate for undocumented patients at the end of life. Limited resources and growing need compound the problem. Care for patients in this unfortunate situation should be grounded in clinical and economic reality as well as respect for the dignity of the individual to avoid exacerbating inequalities.

Keywords: Allocation of Resources, Dialysis, ESRD, End–of–Life Care, Undocumented Patients

• How does Henri’s lack of citizenship or permanent residence in the United States limit not only his access to, but his knowledge of, the full range of medical options available to him? Does this make him vulnerable, and therefore deserving of increased protections, in a way that other patients are not?
• Was it Henri’s right to refuse hospice, considering the lack of other options available? Why or why not?
• Should the ethics consulting team have made more of an effort to communicate to Henri that Lucia was no longer willing to be his caregiver? Why would this matter?
• Is a partial treatment of a severely ill patient worth the effort, or just a waste of time and resources? What is the apparent stance of the ethics committee on this question?
• Kimball, C. “End-of-Life Health Care Disparity: A Case Study”. Nursing Economics. Retrieved from: https://www.nursingeconomics.net/necfiles/news/End-Of-Life_Care_Kimball.pdf
• Ortega, AM. (2014). “Stay or Go? Terminally Ill Undocumented Immigrants Face Dilemma”. New America Media. Retrieved from: http://newamericamedia.org/2014/01/undocumented-and-dying-latinos-may-find-comfort-in-final-journey-home.php

13. Dax’s Case Redux: When Comes the End of the Day?

Ashley R. Hurst, Dea Mahanes, Mary Faith Marshall

Abstract: Forty years after Dax Cowart fought to have his voice heard regarding his medical treatment, patient autonomy and rights are at the heart of patient care today. Yet, despite its centrality in patient care, the tension between a severely burned patient’s right to stop treatment and the physician’s role in saving a life has not abated. As this case study explores, barriers remain to hearing and respecting a patient’s treatment decisions. Dismantling these barriers involves dispelling the myths that burn patients must grin and bear intense pain to recover and that a patient’s choice to discontinue treatment equals physician failure. Moreover, in these situations, sustained, direct engagement between physician and patient can reduce the moral distress of all involved and enable physicians to hear and better accept when a patient is calling for the end of the day.

Keywords: Dax Cowart, Ethics Consultation, Moral Distress, Palliative Care, Patient Autonomy

• Communication between a patient and his or her care team is crucial in cases like this. Why did the avenues of communication break down in this piece? What could have been done to improve the relationship between the patient and the medical team?
• What obligation did the physicians have to be visiting the patient and witnessing the implications of his wound care? If their behavior had been different, how might that have changed the course of treatment for the patient?
• Was the sheer number of people in the room for the patient’s first consult coercive? What could have been done differently to understand both the patient’s wishes and the team’s perspective earlier in the process?
• Does the possibility of a high quality of life post-treatment warrant or justify doctors’ prescribing painful treatment over a patient’s objections?
• “Dax’s Case” preview. (1984). Retrieved from: http://search.alexanderstreet.com/view/work/1630976
• Kavan, MG, Elsasser, GN, Barone, EJ. (2012). The Physician’s Role in Managing Acute Stress Disorder. Am Fam Physician. Retrieved from: http://www.aafp.org/afp/2012/1001/p643.html
• Requests to Die: Non-Terminal Patients. Mhhe. Retrieved from: http://novella.mhhe.com/sites/dl/free/0078038456/1037408/Pen38456_Ch02.pdf

14. Desperately Seeking a Surrogate— For a Patient Lacking Decision-Making Capacity

Martin L. Smith, Catherine L. Luck

Abstract: Our hospital’s policy and procedures for “Patients Without Surrogates” provides for gradated safeguards for managing patients’ treatment and care when they lack decision–making capacity, have no advance directives, and no surrogate decision makers are available. The safeguards increase as clinical decisions become more significant and have greater consequences for the patient. The policy also directs social workers to engage in “rigorous efforts” to search for surrogates who can potentially provide substituted judgments for such patients. We describe and illustrate the policy, procedures, and kinds of expected rigorous efforts through our narration of an actual but disguised case for which we provided clinical ethics guidance and social work expertise. Our experience with and reflection on this case resulted in four recommendations we make for health care facilities and organizations that aim to provide quality care for their own patients without surrogates.

Keywords: Clinical Ethics, Decision–Making Capacity, End–of–Life Decisions, Ethics Committee, Ethics Consultation Service, Patients Without Surrogates, Rigorous Efforts, Social Work, Surrogate Decision Maker, Unbefriended Patient, Unrepresented Patient

• While this author cautions against using social media to determine a surrogate, do you think it could be a reliable method of determining a close relationship?
• Does your state allow non-family members to serve in the role of surrogate decision-maker?
• If there had been sufficient grounds for Sally to be Jacob’s surrogate, do you think she would have come to the same conclusions as Jacob’s brother? Could the process have been expedited, and yet be just as reliable?
• Stanford Hospitals and Clinics. (2009). Health Care Decisions for Patients Who Lack Capacity and Lack Surrogates. Retrieved from: http://www.thaddeuspope.com/images/Stanford_Health_Care_Decisions_For_Patients_Who_Lack_Capacity_and_Surrogates_7_09.pdf
• Varma, S & Wendler, D. (2007). “Medical Decision Making for Patients Without Surrogates”. Arch Intern Med. Retrieved from: http://ogg.osu.edu/site_documents/sage/course3/wk8_varma.pdf

15. What to Say When: Responding to a Suicide Attempt in the Acute Care Setting

Arvind Venkat, Jonathan Drori

Abstract: Attempted suicide represents a personal tragedy for the patient and their loved ones and can be a challenge for acute care physicians. Medical professionals generally view it as their obligation to aggressively treat patients who are critically ill after a suicide attempt, on the presumption that a suicidal patient lacks decision making capacity from severe psychiatric impairment. However, physicians may be confronted by deliberative patient statements, advanced directives or surrogate decision makers who urge the withholding or withdrawal of life sustaining treatments based on the patient’s underlying medical condition or life experience. How acute care providers weigh these expressions of patient wishes versus their own views of beneficence, non–maleficence and professional integrity poses a significant ethical challenge. This article presents a case that exemplifies the medical and ethical tensions that can arise in treating a patient following a suicide attempt and how to approach their resolution.

Keywords: Advanced Directives, Critical Care, Life–sustaining Treatment, Suicide, Surrogate Decision Maker

• Can suicide ever be a rational, autonomous decision? Why or why not?
• How can patient/family relationships pose a challenge for doctors trying to establish the best course of action for a patient?
• How did the family’s perspective affect the patients’ treatment in this case? Was the outcome of their input positive or negative?
• In the absence of both a clear patient advance directive and familial knowledge of patient preferences, how should medical decisions be made? What did the doctors do in this case?

Web resources:

• Carrigan, CG & Lynch, DJ. (2003). Managing Suicide Attempts: Guidelines for the Primary Care Physician. Primary Care Comparnion to The Journal of Clinical Psychiatry. Retrieved from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC419387/
• Sokol, D et al. (2011). Ethical dilemmas in the acute setting: a framework for clinicians. BMJ. Retrieved from: http://www.medicalethicist.net/documents/Tattoo%20BMJ%20PDF.pdf
• Forster, PL & Wu, LH. Assessment and Treatment of Suicidal Patients in an Emergency Setting. Gateway Psychiatric Services. Retrieved from: https://www.gatewaypsychiatric.com/pdf/Assessment%20and%20Treatment%20of%20Suicidal%20Patients%20in%20an%20Emergency%20Setting.pdf

16. Conversation and the Jehovah’s Witness Dying From Blood Loss

D. Malcolm Shaner, Jateen Prema

Abstract: Religious belief can complicate the usual management of seriously ill patients when the patient is a Jehovah’s Witness and the treatment is a blood transfusion. This narrative highlights critical points in a discussion of two cases wherein the process to promote an exercise of free will also becomes an exercise for the ethics consultant and healthcare team. Despite a medical care program’s carefully considered additions to an electronic healthcare record, additional conversation, investigation, preparation, and an open mind are required. Helping conflicted family members and considering whether and in what context to contact the Jehovah’s Witness Hospital Liaison Committee complicates the approach.

Keywords: Blood Transfusion, Jehovah’s Witness, Religious Rights

• Consider the differences between the two cases with regard to how the hospital handled the patient requests. What did the hospital do well, and what could it have improved?
• In Case 1, what was the effect of attempting the surgery once the patient had changed his mind? How did that change influence the perspective of both the doctors and the patient’s mother?
• In Case 1, was the medical officer’s frankness with the patient appropriate, taking into consideration the beliefs that the patient already expressed?
• How did the doctors in Case 2 actively facilitate moral decision making on the part of the patient?
• Panico, ML et al. (2011). “When a Patient Refuses Life Saving Care”. Am J Kidney Dis. Retrieved from: http://www.medscape.com/viewarticle/751273
• Robinson, BA. (2010). “Jehovah’s Witnesses’ (WTS) opposition to blood transfusions”. Ontario Consultants on Religious Tolerance. Retrieved from: http://www.religioustolerance.org/witness11.htm

17. Caregivers’ Role in Maternal-Fetal Conflict

Abstract: The case, which occurred in a public hospital in Turkey in 2005, exhibits a striking dilemma between a mother’s and her fetus’ interests. For a number of reasons, the mother refused to cooperate with the midwives and obstetrician in the process of giving birth, and wanted to leave the hospital. The care providers evaluated the case as a matter of maternal autonomy and asked the mother to give her consent to be discharged from the hospital, which she did despite the fact that her cervix was fully open. She left the hospital and gave birth shortly thereafter. Subsequently, the baby died two days later. In light of contemporary ethical principles, the mother’s competency could be debatable due to the physical and psychological conditions the mother confronted. Furthermore, protection of the fetus’ life should have been taken into account by the caregivers when making a decision concerning discharging of the mother.

Keywords: Ability to Consent, Autonomy, Beneficence, Decision Making Capacity, Ethical Dilemma, Fetal Beneficence, Fetal Rights, Maternal Autonomy, Maternal–Fetal Conflict, Pregnancy

• Did the mother have the right to demand to leave? Would your answer to this question change if discharging the mother endangered the fetus? Why or why not?
• Was the mother in a position to make an autonomous choice? Other than autonomous patient decision-making, are there models of decision-making that might have been considered in this case? How might they be applied?
• How could the care team have done better? Should a hospital have policies to help prevent or address such a situation? If so, what would these policies look like?
• Schetter, CD & Tanner, L. (2012). Anxiety, depression, and stress in pregnancy: Implication for mothers, children, research, and practice. Current Opinion in Psychiatry. Retrieved from: http://health.psych.ucla.edu/CDS/documents/DunkelSchetterTanner-2012COPsychiatry.pdf
• Post, LF. (1996). Bioethical Consideration of Maternal-Fetal Issues. Fordham Urban Law Journal. Retrieved from: http://ir.lawnet.fordham.edu/cgi/viewcontent.cgi?article=2171&context=ulj

18. The Surgeon as Stakeholder: Making the Case Not to Operate

Abstract: Surgeons are in a unique position, serving as gatekeepers to the operating room. They determine if operations are possible, are indicated, and have a reasonable risk–to–benefit profile. When an operation is indicated and the patient is amenable to it, the conversation between surgeon and patient is usually straightforward. On the other hand, when a patient’s co–morbidities substantially increase the risk of operative intervention, surgeons often question the utility of offering their services. These situations become immensely more difficult when patients have the expectation of being offered surgical treatment. This case describes the clinical encounter between an endocrine surgeon and an 83–year–old woman who has been incidentally found to have adrenal metastasis from melanoma. The patient wants an operation that the surgeon is reluctant to offer because of her frailty and high operative risk. The case focuses on the ethical dilemma that arises when a patient wants an operation that a surgeon does not want to perform.

Keywords: Metastatic Melanoma, Palliative Care, Respect for Autonomy, Shared Decision–Making, Surgical Ethics

• What reasons are acceptable for refusing to operate on a patient? Why?
• How should surgeons approach situations in which they are consulted for operative interventions that they do not want to provide?
• When surgeons think the risk of surgery is too great and not justified but patients think the risks are worthwhile, whose assessment should prevail? Why?
• Louden, K. (2015).“Risk Calculator Does Not Alter Surgeons’ Choice to Operate". Medscape. Retrieved from: http://www.medscape.com/viewarticle/852708
• Kasman, DL. (2004).“When is Medical Treatment Futile?: A Guide for Students, Residents, and Physicians." Journal of General Internal Medicine. Retrieved from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1492577/

19. The Enduring Case

Craig M. Nelson

Abstract: In clinical ethics an enduring case takes on a life of its own and comes to closure over a long period of time. This essay describes the evolution of such a case over a 1–year period. The case involves a 90–year old male patient with multiple chronic medical conditions who lacked decision–making capacity, was a resident of a long–term care facility, and did not have known previously expressed wishes regarding medical treatment. The ethics consultation initially revolved around this question: What method or process must be employed so that medical treatment decisions could be ethically reviewed and could include a shared decision–making process for Mr. Smith? This case analysis describes the evolution of this case and argues that the good of the patient must remain paramount throughout an enduring case.

Keywords: Ethical Appropriateness, Ethical Process, Moral Community, Treatment Planning

• What kinds of processes might help an incapacitated patient’s voice be heard, especially when the patient’s values were never formally documented?
• Why might it be important to try to give voice to an incapacitated patient’s values?
• What went well with the process in this clinical ethics consultation? Might there be opportunities for improving the processes deployed in this case, and if so, what might they be?
• Ten Myths About Decision-Making Capacity: A Report by the Natioanl Ethics Committee Of the Veterans Health Administration. (2002). Retrieved from: http://www.ethics.va.gov/docs/necrpts/nec_report_20020201_ten_myths_about_dmc.pdf
• California Advance Health Care Directive Probate Code Section 4701. Retrieved from: https://leginfo.legislature.ca.gov/faces/codes_displayText.xhtml?lawCode=PROB&division=4.7.&title=&part=2.&chapter=2.&article=

20. Military Health Care Dilemmas and Genetic Discrimination: A Family’s Experience with Whole Exome Sequencing

Benjamin M. Helm, Katherine Langley, Brooke B. Spangler, Samantha A. Schrier Vergano

Abstract: Whole–exome sequencing (WES) has increased our ability to analyze large parts of the human genome, bringing with it a plethora of ethical, legal, and social implications. A topic dominating discussion of WES is identification of “secondary findings" (SFs), defined as the identification of risk in an asymptomatic individual unrelated to the indication for the test. SFs can have considerable psychosocial impact on patients and families, and patients with an SF may have concerns regarding genomic privacy and genetic discrimination. The Genetic Information Nondiscrimination Act of 2008 (GINA) currently excludes protections for members of the military. This may cause concern in military members and families regarding genetic discrimination when considering genetic testing. In this report, we discuss a case involving a patient and family in which a secondary finding was discovered by WES. The family members have careers in the U.S. military, and a risk–predisposing condition could negatively affect employment. While beneficial medical management changes were made, the information placed exceptional stress on the family, who were forced to navigate career–sensitive “extra–medical" issues, to consider the impacts of uncovering risk–predisposition, and to manage the privacy of their genetic information. We highlight how information obtained from WES may collide with these issues and emphasize the importance of genetic counseling for anyone undergoing WES.

Keywords: Genetic Discrimination, Genetic Information Nondiscrimination Act of 2008 (GINA), Genetic Testing, Incidental Findings, Military, Secondary Findings

• It is clear that this type of genetic testing is revolutionizing diagnoses, but it comes with ethical concerns. Do the advantages of WES outweigh the possible disadvantages? Why or why not?
• Do you agree that pre–test conversations should be required in every scenario? Why or why not?
• When the SCN5A gene mutation was found, should the father have told his superiors? Why or why not?
• The SCN5A mutation is probabilistic–not all individuals who have the mutation will develop symptoms. However for some patients, the only presenting feature is sudden cardiac death. What are some reasons patients might have for—and against—wanting this information?
• National Human Genome Research Institute. (2014a). Fact sheet: Genetic discrimination. Retrieved from: http://www.genome.gov/10002077
• Majewski, J. et al., (2011). What Can Exome Sequencing Do For You? Journal of Medical Genetics. Retrieved from: http://www.medscape.com/viewarticle/749695_1
• Collins, F. (2007). The threat of genetic discrimination to the promise of personality medicine. Testimony to the United States House of Representatives Committee on Ways and Means. Retrieved from: http://waysandmeans.house.gov/Media/pdf/110/3-14-07/CollinsTestimony.pdf

21. Conflicting Values: A Case Study in Patient Choice and Caregiver Perspectives

Margot Eves, Phoebe Day Danziger, Ruth M. Farrell, Cristie M. Cole

Abstract: Decisions related to births in the “gray zone" of periviability are particularly challenging. Despite published management guidelines, clinicians and families struggle to negotiate care management plans. Stakeholders must reconcile conflicting values in the context of evolving circumstances with a high degree of uncertainty within a short time period. Even skilled clinicians may struggle to guide the patient in making value–laden decisions without imposing their own values. Exploring the experiences of one pregnant woman and her caregivers, this case study highlights how bias may undermine caregivers’ ability to meet their obligation to enhance patient autonomy and the moral distress they may experience when a patient’s values do not align with their own. Management strategies to mitigate the potential impact of bias and related moral distress are identified. The authors then describe one management strategy used in this case, facilitated ethics consultation, which is focused on thoughtful consideration of the patient’s perspective.

Keywords: Bias, Ethics Consultation, “Gray Zone", Moral Distress, Perspective–Taking

• How can we distinguish between concerns that reflect bias versus concerns that reflect legitimate differences in values?
• Does it matter if a patient’s choices reflect bias, or do patients have the right to have their decisions respected even if they are based on potentially unsubstantiated biases or beliefs?
• Given the controversial nature of the patient’s viewpoint regarding life with disabilities, did the providers have an obligation to try to mitigate the patient’s bias? Why or why not?
• What are some of the ways that the providers could have tried to address the patient’s biases regarding life with a disability? For example, should the patient have been offered the opportunity to speak to parents of children with disabilities, specifically those disabilities more likely to be a result of complications from prematurity? Would it be ethically permissible to require that she do so?
• Are there other, more effective ways to support professionals who take care of patients whose values and choices differ so significantly from their own?
• Lyerly, AD. (2008). Reframing neutral counseling. Virtual Mentor. Retrieved from: http://virtualmentor.ama–assn.org/2008/10/ccas3–0810.html
• Guttmacher Institute. (2015). State policies in brief: An overview of abortion laws. New York: Guttmacher Institute. Retrieved from: http://www.guttmacher.org/statecenter/spibs/spib_OAL.pdf

22. Ethical Dilemmas Relating to the Management of a Newborn with Down Syndrome and Severe Congenital Heart Disease in a Resource-Poor Setting

Ama K. Edwin, Frank Edwin, Summer J. McGee

Abstract: Decision-making regarding treatment for newborns with disabilities in resource-poor settings is a diffi cult process that can put parents and caregivers in confl ict. Despite several guidelines that have helped to clarify some of the medical decision-making in Ghana, there is still no clear consensus on the specifi c moral criteria to be used. This article presents the case of a mother who expressed her wish that her child with Down syndrome should not have been resuscitated at birth. It explores the ethical issues at stake in both her misgivings about the resuscitation and her unwillingness to consider surgical repair of an atrioventricular (AV) canal defect. Knowing that children born with Down syndrome are able to pursue life’s goals, should our treatment of complete AV canal defect in such children be considered morally obligatory, even in resource-poor settings like Ghana?

Keywords: Atrioventricular Septal Defect, Down Syndrome, Ethical Duty, Newborn, Withholding Treatment

• What is the difference between a substantiated concern and one that reflects bias? How can providers assess the difference?
• The mother’s views about the relative lack of value of a person with disabilities are controversial and seem to reflect an unfair or unfounded bias. In light of this, did the provider have an obligation to try to address the mother’s bias?
• If health care providers had an obligation to try to mitigate or address the mother’s bias, how should they have attempted to do so? Should the mother have been required to speak to other parents of children with disabilities?

23. System Failure: No Surgeon To Be Found

Carol Bayley

Abstract: A woman admitted to the emergency room of a hospital died because no surgeon could be found to stop the bleeding from injuries she sustained in a farming accident. The case points to ethical shortcomings both institutionally and professionally. The call system is inadequate, and physician fears of being sued or insufficiently compensated contribute to the overall problem. Potential responses include the institutional equivalent of a root cause analysis and an understanding of the pressures brought to bear on physicians to treat emergencies.

Keywords: Emergency Call, Institutional Ethics, John Glaser, Organizational Ethics, Root Cause Analysis

• Do you think a physician has an ethical obligation to try to help a patient who will otherwise die, even when the patient’s problem is not within the physician’s specialty? If so, how do you ground this obligation? If not, why not?
• If physicians have such an obligation, what ought they to do when they face barriers to fulfilling it?
• People often see themselves in the best light; it’s very human to see one’s self favorably, and to try to explain away one’s own responsibility when an error occurs. In light of this natural tendency, what structures could be set into place to help physicians and other stakeholders take responsibility in these types of situations?

24. A Life Below the Threshold?: Examining Conflict Between Ethical Principles and Parental Values in Neonatal Treatment Decision Making

Thomas V. Cunningham

Abstract: Three common ethical principles for establishing the limits of parental authority in pediatric treatment decision–making are the harm principle, the principle of best interest, and the threshold view. This paper considers how these principles apply to a case of a premature neonate with multiple significant co-morbidities whose mother wanted all possible treatments, and whose health care providers wondered whether it would be ethically permissible to allow him to die comfortably despite her wishes. Whether and how these principles help in understanding what was morally right for the child is questioned. The paper concludes that the principles were of some value in understanding the moral geography of the case; however, this case reveals that common bioethical principles for medical decision–making are problematically value-laden because they are inconsistent with the widespread moral value of medical vitalism.

Keywords: Harm Principle, Best Interests, Threshold View, Neonatal Decision Making, Values, Medical Vitalism

• How should the ethicist think through the relationship between apparently competing bioethical views in particular clinical circumstances?
• Should there be a competency evaluation for parents, guardians, surrogates, or other proxy medical decision makers?
• Should society develop policies to limit health care in circumstances where there is an appreciable likelihood of extremely poor outcomes?

25. Ethical Challenges in the Care of the Inpatient with Morbid Obesity

Paul L. Schneider, Zhaoping Li

Abstract: Objective: To provide a thorough analysis of the range of ethical concerns that may present in relation to the care of the morbidly obese inpatient over the course of several years of care. Methods: A narrative of the patient’s complex medical care is given, with particular attention to the recommendations of three separate ethics committee consultations that were sought by his health care providers. An ethical analysis of the relevant issues is given within the Principles of Biomedical Ethics framework, highlighting the principles of autonomy, beneficence, non–maleficence, and justice. Results: The case study presents a patient with morbid obesity, obesity hypoventilation syndrome, and numerous ICU admissions. The first ethics consultation was requested regarding the permissibility of forcing bariatric surgery on him against his will. The second consultation was regarding a request by nursing staff to no longer attempt to mobilize him. The third was regarding the patient’s refusal to be discharged. Conclusions and Recommendations: The care of inpatients with morbid obesity presents a unique set of practical and ethical challenges to health care personnel. A disciplined approach to ethical analysis using the Principles of Biomedical Ethics framework may be helpful in dealing with these challenges. Recommendations for improvement are made for the individual and local settings, as well as nationally.

Keywords: Autonomy, Beneficence, Ethics, Justice, Morbid Obesity, Non–Maleficence, Paternalism, Professionalism

• Sometimes in health care there is a mismatch between a units’ ideal admission criteria and the actual patients admitted. Is it appropriate to try to help health care workers feel more comfortable with patients who are not ideal in some way? If so, are there limits to this approach?
• A “hard paternalism” approach in this case might have involved placing this patient on a locked unit so that he could not have restaurant deliveries. Given his dire clinical circumstances, could this have been ethically supported?
• Do you agree that providers were overly reliant on the principle of autonomy in allowing this patient to be poorly compliant with dietary therapy in the on–campus nursing home? If not, can you suggest alternate rationales?

26. The Clinical Bioethicist’s Role: Should We Aim to Relieve Suffering?

Deborah L. Kasman

Abstract: Bioethics consultants arrive at their profession from a variety of prior experiences (e.g., as physicians, nurses, or social workers), yet all clarify ethical issues in the care of patients. The integrated bioethicist’s role often extends beyond case consultations. This case presents a young person suffering a prolonged and gruesome end–of–life journey, which raised questions regarding the bioethicist’s role in alleviating suffering as part of the health care team. The case is used to illuminate forms of suffering experienced by patients, families, and health care providers. The question arises as to whether it is in the ethicist’s jurisdiction to alleviate suffering, and if the answer is “yes,” then whose suffering should be addressed? The discussion addresses one approach taken by an integrated bioethicist toward promoting delivery of ethical and compassionate care to the patient.

Keywords: Clinical Ethics Consultation, Healing, Meaning in Death, Provider Well–Being, Suffering

• Is relief of suffering part of a clinical ethics consultation? Should it be? Why or why not?
• How do you respond to suffering? What are your most productive responses? Unproductive responses?
• Should a clinical ethicist be involved in clinical care without maintaining direct patient contact? If patients/families refuse ethics involvement, what role can the clinical ethicist play in promoting ethical medical decision–making?
• When a clinical ethicist is also trained as a licensed health provider (e.g., physician, nurse, chaplain, or social worker), can prior clinical experience affect the ethicist’s role in responding to suffering? Can this be an advantage, a hindrance, or both?

27. To Enroll or Not to Enroll?: A Researcher Struggles with the Decision to Involve Study Participants in a Clinical Trial That Could Save Their Lives

Roberto Abadie

Abstract: Hundreds of thousands of clinical trials are conducted annually around the world, working to further scientific knowledge and expand medical treatment. At the same time, clinical trials also present novel challenges to researchers who have access to large pools of research participants and are routinely approached by pharmaceutical companies seeking to recruit subjects for clinical trials. This case study discusses the ethical dilemmas faced by a community health investigator who received an invitation to enroll people who inject drugs (PWID) into a clinical trial of a drug that promised a new treatment option for Hepatitis C. The author elaborates on the ethical tensions that he confronted between “doing good” and “avoiding harm. The paper suggests that issues of distributive justice should also be considered, particularly when the drugs being tested might eventually command prices that place them out of reach of the population enrolled in the trial. This case does not attempt to provide an ethical road map to assist researchers in similar circumstances, but rather to illustrate some of the considerations involved in making a decision about whether or not to participate in clinical trials research.

Keywords: Beneficence, Clinical Trials, Enrollment, Justice, Non-Maleficence

• Since they were originally formulated a few decades ago, the principle of respect for autonomy seems to have gained priority in detriment of the principle of justice. With drug prices reaching exorbitant levels—more than eighty thousand dollars for a full HCV treatment—placing access beyond the reach of many, shouldn’t bioethicists reconsider the way we think about justice?
• The principle of beneficence establishes the requirement of a social good, as one of if its main criteria. But drug prices seem to benefit the pharmaceutical industry while depriving many of much needed drugs. With this in mind, how do you think we should interpret this principle?
• Imagine you or somebody you know has the opportunity to participate in a clinical trial. What elements would you need in order to make an informed decision? And an ethical one?

28. Sometimes Those Hoofbeats Are Zebras: A Narrative Analysis

Abstract: The case of BB, an 11-year-old girl who was hospitalized because of sudden odd seizure-like symptoms and catatonic affect, highlights several ethical issues and communication problems. The correct diagnosis was initially missed, partly because physicians are trained to think of the most common explanation for a patient’s symptoms; the medical education truism “when you hear hoofbeats, think horses, not zebras” was not helpful in BB’s case. The common habit of medical professionals to not revisit a diagnosis once one is established also led to missed opportunities to provide appropriate care for this young patient. The difficulty nurses and/or family members have in questioning a diagnosis and treatment plan are also discussed.

Keywords: Clinical Ethics, Ethical Focus, Case Study, Communication, Medical Error, Moral Distress, Two-Challenge Rule

• Hospitals are generally reluctant to admit patients known to have problematic behavior or unknown diagnoses, yet in this case, having a new physician on her case was the key to making an accurate diagnosis. How might transfers between medical facilities be reimagined to improve patient care, rather than being seen as “dumping” of undesirable problematic patients and families?
• What interventions or changes in protocol might empower nurses and family members to productively question a physician’s diagnosis and treatment plan for a patient?

29. A Jehovah’s Witness Adolescent in the Labor and Delivery Unit: Should Patient and Parental Refusals of Blood Transfusions for Adolescents Be Honored?

Johan Christiaan Bester, Martin Smith, Cynthia Griggins

Abstract: A 15-year-old was admitted to the labor and delivery unit for induction of a 41-week-gestation pregnancy. Her parents, members of Jehovah’s Witnesses, and the patient, who had been studying the religion but had not yet been baptized, were adamant that no blood transfusions would be accepted even if a life-threatening hemorrhage were to occur. In our analysis, we examine the underlying ethical conflict and issues raised by this case. We considered two important ethical questions in analyzing the dilemma: first, whether adolescents are capable of providing autonomous and authentic refusals for lifesaving interventions; and second, whether parents can refuse such interventions for their adolescent children based on their religious beliefs. We provided justifications for not considering the adolescent’s refusal as autonomous and for overruling the parental refusal, concluding that there was ethical support for providing potentially lifesaving transfusions should they become clinically indicated. We also suggested strategies to avoid blood loss and the need for transfusions in order to respect the stated values and preferences of the patient and her family to the greatest degree possible. In order to protect the privacy of the patient and her family, details in this case have been changed and no identifiable information has been used.

Keywords: Best Interests, Blood Transfusions, Jehovah’s Witnesses, Principlism, Religious Conflict

• The authors have defended a principle that it should generally be presumed that adolescents lack the necessary decision–making capacity to provide autonomous refusals for life–saving treatments, unless convincing evidence to rebut this presumptionis present. Do you agree with this principle, and if so, why? What would count as convincing evidence? If not, what reasons can you provide for dismissing this principle?
• In the article a threshold is described for parental decision–making. Beyond that threshold, it is the duty of clinicians to challenge the parental decision, and the duty of the state to overrule the parental decision. Do you agree that the threshold to overrule parental decision–making was reached in this case? Why or why not? What might have changed your view?
• Different jurisdictions have reached different conclusions in cases regarding the authority of adolescents to refuse life–saving treatments. States also have different stances on the “mature minor” rule. How does the neurodevelopment and cognitive development evidence the authors briefly discuss in the article influence your thinking on these issues, and specifically on whether states should have a “mature minor” rule and how they should interpret and apply it?

30. Reframing Medical Appropriateness: A Case Study Concerning the Use of Life-Sustaining Technologies for a Patient With Profoundly Diminished Quality of Life

Colleen M. Gallagher, Elijah Weber, Nisha Rathi

Abstract: This case study considers the clinical ethics issues of medical appropriateness and quality of life for patients who are critically ill. The case involves a terminally ill cancer patient with a profoundly diminished quality of life and an extremely poor prognosis; his spouse desires to bring him home, where she will arrange to keep him alive for as long as possible via life-sustaining interventions. The analysis engages with the complicated notion of medical appropriateness, both in general and as it pertains to life-sustaining interventions in a critical care setting, and considers the ethical implications of the various ways in which one might understand this concept. It also addresses the significance of quality-of-life determinations, emphasizing the role of individualized values in determining the importance of quality of life for clinical decision-making. The discussion concludes with a description of the two strategies employed by the ethics team in helping to alleviate the medical team’s concerns about this case.

Keywords: Case Study, Method, Clinical Ethics Focus

• Is the goal of keeping a terminally ill patient, with a profoundly diminished quality of life, alive for as long as possible via life-sustaining technologies a medically appropriate goal of care?
• Is “medical appropriateness” a useful term for conducting an ethical analysis of a particular case?
• What is the ethical significance of a profoundly diminished quality of life for determining goals of care for a particular patient?
• Do quality of life considerations ever outweigh patient or surrogate decision-maker preferences regarding the ethical justifiability of continuing with life-sustaining interventions?

31. "We Didn't Consent to This"

Shalini Dalal, Jessica A. Moore, Colleen M. Gallagher

Abstract: Patients and their families have identified the need for ongoing and effective communication as one of the important aspects of medical care, especially when the cessation of disease–modifying therapies is being considered at the end–of–life (EOL). Despite recognizing that this communication is extremely important, clinicians are uneasy and find themselves inadequately trained to “break bad news” and manage emotional responses from the patient/family. The inherent difficulties in accurately predicting prognosis and discussing potential complications make these conversations even more challenging. In most circumstances, patients and their families want to know the truth about their disease and what will be done to make them feel better, and to receive enough information to help them choose a course of action. For many terminally ill patients and their families who have elected to transfer to the palliative care unit (PCU) for EOL care, the assumption is that most of these conversations have already been held, and the ongoing focus becomes managing these patients’ physical and psychological sources of distress, validating their and their families’ emotional responses and preparing them for what is to come. This case report illustrates the need for cultural understanding and clear communication among physicians, members of the clinical team, and patients and their family members.

Keywords: Communication, Cultural Competence, End–of–Life, Palliative Care

• What can/should one do to determine if communication of a poor prognosis has been provided in a manner and to the extent that the patient or surrogate decision–maker wants and allows him/her to make a fully informed decision? How can one go about exploring the extent of patient/family understanding and goals/expectations? What would you do if you discovered that the poor prognosis has not been explained in enough detail to facilitate informed decision–making?
• What resources are available in your institution to help health care providers improve upon their cultural competence with the patient populations seen most often in your area? What resources are available to assist in the care, real–time, of patients from various faith traditions and cultures in your hospital?
• Have you experienced a situation similar to the one presented here? What did you do in that case or would you do in future cases to improve communication and outcomes? Is this a personal practice, or has it been implemented as a “standard practice/ process” in your group, when applicable?

32. "Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online"

Marleen Eijkholt, Jane Jankowski, Marilyn Fisher

Abstract: Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.

Keywords: Care-Ethics, Ethics, Internet, Negative Comments, Online, Patient Blogs, Social Media

• What strategies does your institution offer to deal with publicly displayed negative comments from patients?
• To what extent should institutional support be offered to HCPs in interacting with negative eWOM?
• Should providers communicate their distress to a patient (or to family members) about negative expressions in narrative formats, and if so, how can this be done?

33. "A Personal Narrative on Living and Dealing with Psychiatric Symptoms after DBS Surgery"

Frédéricand Gilbert, John Noel M. Viaña

Abstract: Although deep brain stimulation (DBS) may result in dramatic motor improvement in people with Parkinson's disease (PD), it has been correlated with a number of postoperative psychiatric side effects. We report a case of a person with PD experiencing depression and hypomania following DBS surgery. We provide a detailed report of the patient's personal experiences dealing with and managing these psychiatric side effects for three years. Providing a personal narrative focusing on detailed patient subjective experiences complements reports that give insight into the short- and long-term effects of DBS on established psychiatric measures and neurologic activity. But, most importantly, such a qualitative approach provides prospective patients and clinicians with a broader ethical picture of real-life challenges faced and coping strategies employed by PD patients treated with DBS who are experiencing psychiatric adverse events. This case study reinforces the ethical need to disclose the potential risk of harm to prospective patients as well as the importance of establishing a multidisciplinary postoperative supportive group.

Keywords: Deep Brain Stimulation, Identity, Neuropsychiatric Effects, Parkinson's Disease, Self, Side Effects

• What obligations do DBS providers and researchers have to offer follow-up care aimed at addressing potential personality and behavior changes that can cause patients distress?
• What are the trade-offs between the motor ben-efts of DBS and the potential psychological harm induced by treatments?
• Should decision aids be developed to help patients weigh the pros and cons? What would you put into such a decision aid?
• Should family members have a greater voice in DBS decision-making than in ordinary healthcare decision-making given the potential impact of DBS on personality and behavior?

34. "The Will Reconsidered: Hard Choices in Living Organ Donation"

Robert M. Guerin, Elizabeth O’Toole, Barbara Daly

Abstract: In the following article, we illustrate an interview between a living donor advocate and a potential living organ donor in which the donor faced a hard choice: the reasons to donate and the reasons not to donate were equally persuasive. In the discussion that follows, we analyze the act of willing, what differenti-ates coercion and willing, and how the case study highlights a different, but by no means rare, instance in which donors feel paralyzed by the choice at hand. In such cases, we suspect that donor advocates either do not approve the potential donor for transplantation or simply remain neutral. But we think that this approach benefits neither the donor nor the recipient. We conclude this study with recommendations for living donor advocates, providing questions that might solicit donors’ deeper values and suggesting that in these situations donors may benefit from additional time for reflection.

Keywords: Coercion, Donor Advocate, Hard Choice, Living Donor, Self, Willing, Persuasive Communication, Shared Decision Making, Competing Values

35. "Malleable Transplant Criteria: At What Cost?"

Angel Alsina, Rebekah Apple, Nyingi Kemmer and James P. Orlowski

Abstract: An 18-year-old male who had been diagnosed at age 7 with a rare, progressive liver disease was referred to the transplant center and received a transplant, even though he did not meet the center’s criteria for a patient with hepatopulmonary syndrome (HPS). Complications required relisting the patient urgently, but he eventually fully recovered; total hospital charges for his treatment exceeded $5 million. Reflection upon the case resulted in analysis of two ethical questions: primarily, clinician obligation to balance the provision of actuarially fair health care to society against the healing of a single patient; secondarily, the effects of malleable transplant criteria on trust in the patient selection process. We affirmed that physicians should not be principally responsible for justifying financial investment to society or for upholding beneficence beyond the individual physician and patient relationship in order to contain costs. We concluded, however, that such instances, when combined with manipulation of transplant center criteria, pose a potential threat to public trust. We therefore suggested that transplant centers maintain independent ethics committees to review such cases.

Keywords: Beneficence, Organ Donation, Organ Transplant, Rationing, Transplant Criteria, Ethics Committees, Hospital Charges, Moral Obligations, Hepatopulmonary Syndrome

• The authors mention rationing and affirm the tenet that it is unethical to withhold care because of exorbitant costs. What are the ethical implications of this practice, given that the United States has acknowledged the current system as unsustainable? Would you defend providing heroic, expensive care to every patient, regardless of the effect such behavior would have on the future of health care?
• The authors noted the difference between the allocation of organs and patient selection. A number of ethical principles are applied to donation and transplantation, and they often contradict each other. Is it possible to reconcile utilitarianism and deontology? What other principles collided in this case, and how could these conflicts have been avoided?
• A recent study in JAMA found that “prices of labor and goods, including pharmaceuticals and devices, and administrative costs appeared to be the main drivers” of high health care costs in the United States (Papanicolas, Woskie, & Jha, 2018, p. 1024). Growing attention is being paid to the income of nonclinical health care professionals, and Commins (2018) noted that compensation for nonclinician chief executive officers in over 20 US health systems almost doubled between 2005 and 2015. How much of an issue is compensation for nonclinicians, given the rising amount of health care spending in the country? Would adjustments to administrative costs necessarily result in more money being spent on patient care?

36. "Responding to Requests for Aid-in-Dying: Rethinking the Role of Conscience"

Elizabeth R. Brassfield, Manisha Mishra, and Mara Buchbinder

Abstract: This case study illustrates the complex role that a physician’s conscience can play in end-of-life care. We examine a case from Vermont in which a terminally ill patient requests aid-in-dying from her primary care physician under the state’s “Patient Choice and Control at End of Life” Act (Act 39). The physician feels conflicted: she is opposed to prescribing death-hastening medication but does not want to abandon her patient. Much of the medical ethics literature on conscience focuses on whether health care professionals should be permitted to abstain from providing morally contested medical services. Our analysis highlights the interplay of conflicting values that inform the physician’s engagement with aid-in-dying, demonstrating that the issue is often more nuanced than the question of whether or not a physician can (or should) opt out.

Keywords: Conscience; End-of-Life Care; Medical Ethics; Nonabandonment; Patient-Provider Relationship; Physician Aid-in-Dying/Physician-Assisted Suicide; Terminal Illness

• How does Dr. Jones’s response to Mary challenge conventional bioethical views of conscientious objection?
• What are the limits of a commitment to nonabandonment?
• Given a more robust understanding of the role of conscience in medical care, what form, if any, should protections for conscience take?

37. "Getting to the Heart of the Matter: Navigating Narrative Intersections in Ethics Consultation"

Leslie A. Kuhnel

Abstract: Ethics consultants can apply a narrative ethics approach to address ethical challenges that arise in critical situations. This approach recognizes how those involved in the narrative make sense of, keep faith with, and try on new identities and new understanding of their stories. This case study explores the ways in which the stories of patient, provider, and clinical ethics consultant intersect, and considers how the organic nature of the narrative ethics approach allows ethics consultants to navigate the stories of multiple stakeholders as they grapple with complex health care decisions. This essay also suggests that clinical ethics consultants applying the lens of narrative ethics have an obligation to approach consultations with courage, professional humility, intellectual curiosity, and an appreciation for the narratives of as many of the stakeholders as possible (including one’s own).

Keywords: Ethics Consultation, Intersecting Stories, Narrative Ethics

Discussion Questions:

• When have you experienced making sense, keeping faith, and trying on in your own personal or professional health care encounters?
• What narrative traps have you experienced in the course of clinical ethics consultation?
• How has your own personal narrative shaped your perceptions of this case?

38. "Speaking for Our Father"

Nico Nortjé

Abstract: A living will is a document in which an individual can communicate his or her health care choices to loved ones in the event that he or she is unable to do so directly. Many surrogate decision-makers use living wills as guides; however, the existence of such documents does not entirely relieve them of their burden. Surrogate decision-makers often need to consider the impact of the personal and family burdens entailed by their decisions, and the stress accompanying these burdens regularly creates high levels of anxiety and depression. This stress can be exacerbated when two surrogate decisionmakers are at loggerheads as to the best way forward. This case study illustrates the effects of stress accompanying disagreement among surrogate decision-makers—here, the patient’s adult sons—and demonstrates that a process of listening can help the bioethicist identify the values that are important to the patient and, consequently, to the surrogate as well, and use these values to help address the issue.

Keywords: Ethics, Intensive Care Unit, Living Will, Medical Power of Attorney, Surrogate Decision-Making

• Have you experienced similar cases where parties disagreed as to what was best for the patient? What did you do?
• Do you think it is better for surrogate decisionmakers to have leeway in interpreting the wishes of a patient, or should they have explicit instructions?
• There may be disagreement and tension within the health care team as to the best way forward. How can you assist team members in presenting a unified message to the family?

39. "Forcible Amputation in Delusional Patients: A Narrative Analysis of Decisional Capacity"

Lori A. Roscoe, David P. Schenck, Joel L. Eisenberg

Abstract: This case study concerns the predicaments faced by two women who each had been advised by her physicians to have a gangrenous foot amputated to prevent the potentially fatal spread of infection. In both cases, the determination of the patients' decisional capacity was a critical component in judging whether or not to honor their medical treatment decisions. The communicative complexity of navigating a double bind, a situation in which a person confronts a choice between two undesirable courses of action, is also discussed. The patients in these cases had no medically appropriate choice that also respected other valued outcomes, such as independence, a sense of dignity, or control over one's destiny. Taken together, these cases raise issues about the context-specific meaning of decisional capacity and its role in informed consent.

Keywords: Decisional Capacity, Double Bind, Amputation, Communication

• Under what circumstances might a decision to amputate over the patient's objections be appropriate?
• Under what circumstances can a delusional or cognitively impaired patient give informed consent for medical treatment?
• Suppose the patient was not delusional but nonetheless believed that merely washing the wound with soap and water would make it better. Would it then be ethical to perform the amputation against her will? What role does rationality play in determining competence and giving informed consent?
• How can a patient's wishes be acknowledged in a plan for treatment, even if she or he is deemed to lack decisional capacity?

40. "A Health Care Systems Approach to Improving Care for Seriously Ill Patients"

Lisa Soleymani Lehmann, Jill Lowery, Virginia Ashby Sharpe, Kenneth A. Berkowitz

Abstract: Health care systems can go beyond advance care planning to create mechanisms for eliciting and documenting the goals of care and life-sustaining treatment decisions of patients with serious life-limiting illnesses. These systems can help ensure that patients receive care that is consistent with their values and preferences. We describe a case in which even though a patient with a serious illness had completed an advance directive and had discussed preferences with family, clinicians failed to identify the patient's authentic preferences for life-sustaining treatment. We offer a stepwise framework for communication with seriously ill patients and describe a systems approach to transforming the process of eliciting, documenting, and honoring patients' life-sustaining treatment preferences in the U. S. Veterans Health Administration.

Keywords: Advance Care Planning, Communication, End-of-Life Care

41. "An Ethics of Unknowing: Discerning Ethical Patient-Provider Interactions in Clinical Decision-Making"

Abstract: There is an irreducible amount of uncertainty in clinical decision-making. Both health care providers and patients experience anxiety elicited by clinical uncertainty, and this can lead to missed opportunities for healthy shared decision-making. In order to improve the patient-provider relationship and the ethical qualities of decision-making, the provider first needs to recognize where his/her "unknowing" exists. This article presents a model for a unique ethics of unknowing by identifying three levels at which the provider's knowledge or lack thereof impacts clinical decision-making. The model illuminates ethical choices that providers can make to promote healthy patient-provider relationships. The means by which an ethics of unknowing informs shared decision-making in patient care will be exemplified through a case study of one patient's encounters with several physicians while making difficult decisions throughout her breast cancer journey.

Keywords: Clinical Ethics, Uncertainty, Epistemology, Shared-Decision Making, Patient-Provider Relationship, Patient Care, Medical Decision-Making, Breast Cancer

42. "How Should Physicians Manage Neuro-prognosis with ECPR?"

Ian J. McCurry, Jason Han, Andrew Courtwright

Abstract: Rapidly advancing technologies in the field of extracorporeal cardiopulmonary resuscitation (ECPR) have presented a new challenge in accurate neuroprognostication following cardiac arrest. Determination of brain state informs the prognostic picture and allows providers to begin effective communication regarding likelihood of meaningful neurological recovery as defined by patients or family members. The evolving role of sedation during ECPR and its impacts on ethical tension in decision-making is reviewed. Work surrounding the advancing field of neuroprognostication after cardiac arrest and hypothermia is summarized and implications of premature withdrawal of life-sustaining treatments are discussed. Advances that improve predictive value for neurological recovery are utilized in affirming and discussing the implications for end-of-life wishes of individuals in the setting of intensive resuscitative therapies.

Keywords: End Of Life, Resuscitation, Ethics, Critical Care, ECMO

43. "The Ethics of Choosing a Surrogate Decision Maker When Equal-Priority Surrogates Disagree"

Matthew Shea

Abstract: When decisionally incapable patients need a surrogate to make medical decisions for them, sometimes the patient has not appointed a healthcare agent and there is intractable disagreement among potential surrogates of equal priority, legal rank, or relation to the patient (e.g., child vs. child, sibling vs. sibling). There is no ethical, legal, or professional consensus about how to identify the appropriate surrogate in such circumstances. This article presents a case study involving an elderly female patient whose four children disagree about whether to continue life-sustaining treatment for their mother, along with an ethical analysis of various strategies for selecting the appropriate surrogate in cases of conflicting equal-rank family members. It critically examines three different strategies—chance, majority rules, and quality of relationship with the patient—and defends the third approach.

Keywords: Surrogate Decision Making, Equal-Priority Surrogates, Family Disagreement, Conflict Resolution, Substituted Judgment, Clinical Ethics, Ethics Consultation

44. "A Gay Epidemiologist and the DC Commission of Public Health AIDS Advisory Committee"

Steven S. Coughlin, Paul Mann, and Bruce Jennings

Abstract: Based upon the lead author's deep personal and professional experience, this case narrative illustrates the importance of engagement between public health practitioners and members of affected populations and their advocates. The case underscores the need to build strong coalitions to address serious public health and social issues. It also illustrates how decisions about control groups in research raise ethical issues. In addition, the case illustrates the reality that public health and social services are sometimes inadequate in the face of dire circumstances. Justice in public health has both a distributive aspect (how to allocate limited resources and distribute potential benefits as fairly as possible) and a procedural dimension (ensuring public participation, especially of those most affected). Frameworks for public health ethics, which post-date the events detailed in the autobiographical case narrative, highlight both distributive justice and procedural justice.

Keywords: African Americans, AIDS, HIV, Community Prevention, Prevention, Public Health, Social Justice

45. "Shared Decision-Making in Palliative Care: A Maternalistic Approach"

Laura Specker Sullivan, Mary Adler, Joshua Arenth, Shelly Ozark, and Leigh Vaughan

Abstract: During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches.

Keywords: Shared Decision-Making, Palliative Care, End of Life, Paternalism, Relational Autonomy

46. "Phantom Physicians and Medical Catfishing: A Narrative Ethics Approach to Ghost Surgery"

Saljooq M. Asif

Abstract: The concerns raised by ghost surgery, an unethical practice in which someone other than the surgeon who obtains consent performs an operative procedure without the patient’s knowledge, have long been ignored by bioethics and other related disciplines. Indeed, ghost surgery is neither tracked nor studied in the United States, and the practice itself remains underreported. Ghost surgery represents a corporeal transgression as well as a relational rift: what was communicated by physicians is rendered null and void, and the surgical narrative that patients thought they knew is disrobed as a lie and revealed to be a catfish. In order to combat this practice and prevent any form of medical catfishing, physicians must guarantee effective communication and transparency and view themselves as storytellers alongside their patients. By following such a framework, physicians can ideally end the simulation and suture an ethic of accountability within a co-constructed narrative.

Keywords: Ghost Surgery, Narrative Ethics, Accountability, Catfishing, Medical Harm

47. "It Takes Time to Let Go"

Tiffany Meyer, Laura Walther-Broussard, Nico Nortjé

Abstract: Futile or nonbeneficial treatment is often a source of contention between care teams and family members of ICU patients. This narrative describes such a case at a cancer center. In the midst of the COVID-19 crisis, the psychosocial team had to act as a bridge between a patient's surrogate decision maker and the care team. In light of COVID-19 visitor restrictions, the psychosocial team, the surrogate/family, and the care team had to respectfully work towards what was best for the patient.

Keywords: Nonbeneficial treatment, COVID-19, Psychosocial team, Values, Goals of Care

48. "An American’s Experience with End-of-Life Care in Japan: Comparing Brain Death, Limiting and Withdrawing Life-Prolonging Interventions, and Healthcare Ethics Consultation Practices in Japan and the United States"

Alexander A. Kon, Keiichiro Yamamoto, Eisuke Nakazawa, Reina Ozeki-Hayashi, Akira Akabayashi

Abstract: American and Japanese laws, customs, and practices in end-of-life decision-making differ significantly. We present a case with which one of the authors was involved to illustrate some of the key legal and cultural differences in the declaration of brain death, limiting and withdrawing life-prolonging interventions, and healthcare ethics consultation practices. The analysis presented facilitates understanding of similarities and differences between Japanese and American healthcare ethics specifically in regards to end-of-life care. Further, the analysis provides insights that can aid in developing policies and practices in regions where multiple cultures coexist.

Keywords: Brain Death, Organ Transplantation, Withholding Treatment, Japan, Ethics Consultation

49. "The Sword of King Solomon"

Maria Susana Ciruzzi

Abstract: Conjoined twin pregnancies are one of the greatest dilemmas we face in healthcare practice. Thanks to scientific knowledge and evolution, technology and the higher level of wealth in our society, conjoined twins have a chance to survive, albeit with the risk of major consequences on their lifespan and quality of life. Particularly, in the case of newborns with extreme prematurity or congenital malformations, special care must be taken in the use of treatments that offer little to no benefit. This is especially the case with procedures and techniques of unproven efficacy that could create unfounded expectations and hopes in parents and health professionals. It is within this conceptual framework that the author presents a case submitted to a bioethics committee at a pediatric hospital in a Latin American metropolis and analyzes the ethical challenges posed to the treating team and the consensual approach determined by the team.

Keywords: Conjoined Twins, Parental Decision Making, Do No Harm Principle, Ethical Dilemma, Quality of Life

50. "Appreciating the Dynamicity of Values at the End of Life: A Psychological and Ethical Analysis"

Austin Burns, Natalie Hardy & Nico Nortjé

Abstract: It can be difficult for families to accept when loved ones experience a change in saliency of values due to serious illness and inevitable death. When patients lose decision-making capacity, family members often refuse to withdraw care and insist on the continuation of non-beneficial treatment. Through a joint ethical and psychological analysis, this case study examines the narrative of a husband and wife, wed for over 50 years, and how the patient’s values, his life’s story, and the wife’s interpretation of his preferences were reconciled to achieve a resolution that respected the patient’s autonomy and previously expressed wishes.

Keywords: Ethics, Anticipatory Grief, Serious Illness, Decision-Making, Values

51. "Serendipity and Social Justice: How Someone with a Physical Disability Succeeds in Clinical Bioethics"

Kevin T. Mintz

Abstract: Trainees with disabilities in health-related professions are often subjected to structural ableism in medicine: the discriminatory manifestation of lowered expectations towards people with disabilities by medical professionals. In this case study, I reflect on my experiences as the first individual with significant disabilities to be offered a postdoctoral fellowship in clinical bioethics at the National Institutes of Health. I focus on the following question: What arrangements need to be in place in order for someone with my level of disability to thrive as a clinical bioethicist? By telling my story, I show how the process of accommodating trainees with disabilities often requires creative problem-solving and a considerable amount of institutional resources. I also describe the team-based method that my mentors and I developed to enable me to complete rotations on the NIH’s bioethics consultation service. If more trainees with disabilities are to succeed in clinical bioethics trainee programs, the field will have to grapple with how to develop an infrastructure for providing disability-related support across training programs. This article is the beginning of a dialogue about how to build such an infrastructure.

52. "The Right to Be Childfree"

Andrea Eisenberg & Abram L. Brummett

Abstract: In this manuscript, we start with a real life account of an Ob/Gyn experience with a young patient from the childfree movement requesting permanent sterilization. A narrative ethics approach invites the reader to experience the encounter in an immersive way for this growing issue. This approach allows readers to reflect on their reaction to the patient and consider how that can affect other patient encounters. Additionally, it explores the stigma these young patients encounter making a permanent decision to never have children. In the commentary, we explore the ethical issues in this case including why we question the permanent decision to refrain from having children. We also discuss informed consent and patient education along with the various approaches to physician-patient relationships with an emphasis on shared decision making, which allows space for both patient and physician to question and reason through their health decisions.

Keywords: Childfree, Permanent Sterilization, Shared Decision Making, Regret, Narrative Ethics

53. "Undisclosed Placebo Trials in Clinical Practice: Undercover Beneficence or Unwarranted Deception?"

Daniel Edward Callies

Abstract: A placebo is an intervention that is believed to lack specific pharmacological or physiological efficacy for a patient’s condition. While placebo-controlled trials are considered the gold standard when it comes to researching and testing new pharmacological treatments, the use of placebos in clinical practice is more controversial. The focus of this case study is an undisclosed placebo trial used as an attempt to diagnose a patient’s complex and unusual symptomology. In this case, the placebo was used not just as a treatment, but as a diagnostic intervention in order to determine the best course of treatment for a patient. Could the deceptive use of a placebo be justified in clinical practice on the grounds of beneficence?

Keywords: Placebo, Beneficence, Deception, Trust, Disclosure

54. " What Do We Owe to Patients Who Leave Against Medical Advice? The Ethics of AMA Discharges?"

Leenoy Hendizadeh, Paula Goodman-Crews, Jeannette Martin, Eli Weber

Abstract:  Discharges against medical advice (AMA) make up a significant number of hospital discharges in the United States, and often involve vulnerable patients who struggle to obtain adequate medical care. Unfortunately, much of the AMA discharge process focuses on absolving the medical center of liability for what happens to these patients once they leave the acute setting. Comparatively little attention is paid to the ethical obligations of the medical team once an informed decision to leave the acute care setting AMA has been made. Via a case narrative, we offer an ethical framework that we believe can help guide an ethically defensible AMA discharge process. By emphasizing our duty to provide the best care possible under the circumstances, we contend, our ethical obligations to promote the patient’s best interests can still be met despite their decision to leave the acute setting against medical advice.

Keywords:  Beneficence, Narrative Ethics, Case Study, AMA Discharges, Shared Decision-Making

  Link to Case on MUSE

55. "Jehovah's Witnesses and the Normative Function of Indirect Consent"

Joanna Smolenski

Abstract:  In this case study, I consider Mr. A, a Jehovah's Witness with chronic vertebral osteomyelitis in need of surgical debridement. Prior to proceeding to the OR, he was unwilling either to explicitly consent to or refuse blood transfusion, while indicating he was open to transfusion intraoperatively, if the team judged it necessary. Ethics was consulted to determine if it would be morally justifiable for the team to proceed with blood transfusion during the course of surgery without Mr. A's documented consent to being transfused. I argue that in this case, what might be termed indirect consent—namely, delegating decision-making regarding some possible course of action without explicitly consenting to the course of action itself—may be sufficient for discharging the clinician's ethical obligation to obtain consent. Identifying information has been changed or omitted to protect patient confidentiality.

Keywords:  Blood Transfusions, Jehovah's Witnesses, Informed Consent, Indirect Consent, Self-Sovereignty

56. "Parental Refusals of Blood Transfusions from COVID-19 Vaccinated Donors for Children Needing Cardiac Surgery"

Daniel H. Kim, Emily Berkman, Jonna D. Clark, Nabiha H. Saifee, Douglas S. Diekema, Mithya Lewis-Newby

Abstract: There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID-19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these issues. We describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics.

Keywords:  Medical Ethics, Critical Care, Pediatrics, Innovation, Cardiac Surgery, Cardiac Catheterization

57. “Withdrawing Life Support After Attempted Suicide: A Case Study and Review of Ethical Consideration"

David A. Oxman & Benjamin Richter

Abstract: Ethical questions surrounding withdrawal of life support can be complex. When life support therapies are the result of a suicide attempt, the potential ethical issues take on another dimension. Duties and principles that normally guide clinicians’ actions as caregivers may not apply as easily. We present a case of attempted suicide in which decisions surrounding withdrawal of life support provoked conflict between a patient’s family and the medical team caring for him. We highlight the major unresolved philosophical questions and contradictory normative values about suicide that underlie this conflict. Finally, we show how these considerations were practically applied to this particular case.

Keywords: Medical Ethics, Critical Care, Life Support Therapies, Suicide

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Bio-Ethics and One Health: A Case Study Approach to Building Reflexive Governance

Antoine boudreau leblanc.

1 Bioethics Programs, Department of Social and Preventive Medicine, Public Health School, Université de Montréal, Montréal, QC, Canada

Bryn Williams-Jones

Cécile aenishaenslin.

2 Department of Pathology and Microbiology, Faculty of Veterinary Medicine, Université de Montréal, Montréal, QC, Canada

Associated Data

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author/s.

Surveillance programs supporting the management of One Health issues such as antibiotic resistance are complex systems in themselves. Designing ethical surveillance systems is thus a complex task (retroactive and iterative), yet one that is also complicated to implement and evaluate (e.g., sharing, collaboration, and governance). The governance of health surveillance requires attention to ethical concerns about data and knowledge (e.g., performance, trust, accountability, and transparency) and empowerment ethics, also referred to as a form of responsible self-governance. Ethics in reflexive governance operates as a systematic critical-thinking procedure that aims to define its value: What are the “right” criteria to justify how to govern “good” actions for a “better” future? The objective is to lay the foundations for a methodological framework in empirical bioethics, the rudiments of which have been applied to a case study to building reflexive governance in One Health. This ongoing critical thinking process involves “mapping, framing, and shaping” the dynamics of interests and perspectives that could jeopardize a “better” future. This paper proposes to hybridize methods to combine insights from collective deliberation and expert evaluation through a reflexive governance functioning as a community-based action-ethics methodology. The intention is to empower individuals and associations in a dialogue with society, which operation is carried out using a case study approach on data sharing systems. We based our reasoning on a feasibility study conducted in Québec, Canada (2018–2021), envisioning an antibiotic use surveillance program in animal health for 2023. Using the adaptive cycle and governance techniques and perspectives, we synthesize an alternative governance model rooted in the value of empowerment. The framework, depicted as a new “research and design (R&D)” practice, is linking operation and innovation by bridging the gap between Reflexive, Evaluative, and Deliberative reasonings and by intellectualizing the management of democratizing critical thinking locally (collective ethics) by recognizing its context (social ethics). Drawing on the literature in One Health and sustainable development studies, this article describes how a communitarian and pragmatic approach can broaden the vision of feasibility studies to ease collaboration through public-private-academic partnerships. The result is a process that “reassembles” the One Health paradigm under the perspective of global bioethics to create bridges between the person and the ecosystem through pragmatic ethics.

Introduction

The greatest health, social, and environmental challenges of the twenty-first century, such as antibiotic resistance, zoonotic pandemics, and climate change, require a “complexification” of monitoring and management programs ( 1 ). One Health aiming at the convergence of human, animal, and environmental health seeks to operationalize this complexity—in terms of contextualization, participation, and adaptation—through the integration of adaptive governance systems in evaluation, surveillance, and intervention ( 2 – 4 ). However, such programs should also be based on the practice of empowerment ethics: a self-critical examination, a receptivity to criticism, and a critical duty to change in order to judge and implement “good” learning for a “better future.” As understood by Van Rensselaer Potter (1911–2001; who coined the term bioethics in 1970), empowerment must lead to responsibility as a duty, not only to autonomy as a right for self-governance which tends to separate the singular will from biological facts ( 5 , 6 ). First, em-power ( in/within power) means managing and preventing the power, knowledge, and interest dynamic that transcends and modulates people and “community-will” and behavior: a “bottom-up” approach. Second, empowerment must lead individuals and communities to make their own changes, as autonomous and self-determining agents who acknowledge local values and constraints as criteria for change. Third, power must lead to awareness of our individual and social actions, which should also lead to self-responsibility and even to accountability mechanisms: an “abductive” approach ( 7 ) 1 .

Data sharing processes, biosurveillance programs, and multiscale analysis are techno-intellectual systems; they are examples of Edgar Morin's complexity concept. Managing complex systems requires pragmatic methodologies and ethics ( 9 ) because the willingness of people to consent to and participate in these systems changes over time ( 10 , 11 ). An ethic (as a code) is useful both for transparency and as a means to produce a climate of trust that is suitable for discussion, while ethical analysis (as a methodology) is a key component to avoid the emergence of oppressive powers, to reduce bias, and to envision a “better future” ( 12 , 13 ). For instance, feedback from One Health surveillance programs such as benchmarking is appreciated by practitioners where it improves their practices, until it raises ethical issues, notably, risks of bias and confidentiality breach. Empowerment ethics (as a discipline), then, is about finding ways to communicate to produce a collective narrative that gives meaning and orientation to actions and is especially important when there is a diversity of terminologies and interdisciplinary perspectives. In this view, communication must go beyond the person-to-person exchange and become a collective process ( 14 ).

Predictive and mechanistic models are no longer sufficient to address health problems in all their complexity ( 15 ). Callon et al. ( 14 ) propose that we move from risk assessment and management to a social process that integrates more broadly uncertainty. One Health should therefore move its problem-solving strategies “upstream,” before program ideation, which we will call here the “assemblage” of its knowledge, notably, its technologies, its methods, even its paradigms ( 16 , 17 ). Such One Health ethics, which would progress through communication and knowledge systems, would enable stakeholders to question and advance their understanding and positioning. However, managing the “cross” thematic (e.g., human, animal vs. environment studies), the “inter” disciplines (e.g., medicine, technology, and law), the “trans” sectorial (e.g., the relationship between experts and non-specialists), and the “multi” scale viewpoints (e.g., human, beings, and things as organizational units) is a fundamental barrier to the successful implementation of One Health programs ( 18 – 20 ).

The objective is to lay the foundations for a methodological framework in empirical bioethics, the rudiments of which have been applied to a case study to building reflexive governance in One Health. This case made it possible to study the functioning of empowerment ethics in the development cycles of One Health surveillance programs. The proposed case sought to implement an antibiotic use surveillance program in animal health (2018–2021) in Quebec, Canada. Data from this surveillance system in public health could allow both scientific research and informed decision-making. The research question here, in bioethics, is about the promotion and education of critical thinking in technology and health, not only of scientists and policymakers but of all stakeholders. Building on a pragmatic approach to bioethics, this reasoning is driven by, first: How could empowerment ethics ease the “bridging” between cognitive and collective? From a synthesis of One Health methodologies and paradigms, the reasoning continues with a framework laying out the theoretical rudiments for a hybrid method to understand: How can we embed person-to-person dialogue in a collective assemblage to engage social groups in a negotiation process? Dialogue is supported by reflective critical thinking approaches, while social negotiation moves this cognitive to the level of collective interaction supported by ethical deliberation approaches. Finally, learnings from the case study will give answers to How can a community of beings and things become “reflexive,” conscious, and responsible, i.e., the “ought to be” empowered?

Site and Approach

Case study of antimicrobial surveillance and data governance.

Since 2017, the Government of Quebec has been considering developing surveillance programs that integrate efforts in health prevention between several ministries and sectors (see the Government Policy on Health Prevention; GPHP). This type of policy could be improved by its connection with several advanced theories in various fields that converge in practice under the perspective and terminologies of One Health and sustainable development. A challenge for One Health, in such a policy context, is to deepen the decision-maker's understanding of the pertinent theories while avoiding reduction to a set of expert buzzwords or jargon that then complicate translation into practical terms ( 21 ).

One of the policy objectives set by the Government was to develop a well-articulated program that had community-based meaning and criteria (e.g., feasible and acceptable, understood as useful, and sustainable) for a surveillance system of antibiotic use in animal health (agriculture and pets). Its program arose in a social context where several sectors, particularly in human, animal, and environmental health, had already implemented initiatives dealing with outbreaks, pharmaceuticals, and, notably, antimicrobial governance based on systems of information and communication technologies (SICT) used for surveillance purposes. In animal health, different committees, associations, and groups are involved in leading these reflections through participation in formal and informal working groups. These activities aim to produce detailed application procedures that would then be laid out in an action plan for the management of antibiotic use, surveillance, and governance for all sectors of veterinary practice and food production 2 . Many initiatives were more local (microscale) and launched by individuals or groups affiliated with the industry, academia, and professional associations, while others were broader (macroscale), and initiated by governments and civil society as networks (market, culture, values, etc.). The resulting initiatives are designed to push for change on both a micro and macro scale. But for such change to be effective, it requires a mixture of approaches, including both “top-down” political incentives (regulations, financing, and infrastructure) and “bottom-up” processes, including democratic mechanisms.

In light of these different initiatives, the Ministère de l'agriculture, des pêcheries et de l'alimentation (MAPAQ) mandated a feasibility study of the implementation of a surveillance program on the use of antibiotics in animals in Quebec (2018–2021). Several recommendations emerged from the resulting consensus-building process (2019–2020) within the veterinary and agricultural community, notably:

• To build data systems and information platforms and their use based on trust,
• To co-construct a common normative language,
• To design a collaborative governance regime to shape the functioning of the program.

Aiming to implement a methodology for this collaborative collective thinking, the multidisciplinary team in charge of the feasibility study made a distinction between “consultation” and “concertation” to unpack the consensus-building nature of the methodological process. The consultation aims to gather information from a group to inform experts in developing the “best” model possible (the feasibility aspect), while concertation seeks for consensus among a group to deliberate about which criteria are “best” (values and vision), in order to give an acceptable orientation to the developing model (see here the clear distinction between descriptive and appreciative knowledge further developed in the last section).

The concertation phase of the feasibility study, which began with 60 representatives, eventually brought together 100, an extensive recruitment process aimed at saturating the perspectives covered by the different sectors of activity (industry, academia, government, association, order, etc.), practice (pork, poultry, small and large ruminants, pets, and sports animals), and professions (breeders, veterinarians, nutritionists, researchers, informatics experts, etc.). The two concertation events made it possible to collectively deliberate on the overall vision and were then followed by 12 consultations that brought together different stakeholders in small groups (6–16 participants per group) to deepen the discussion. Subsequent focused individual interviews made it possible to add reflexive details to the perspectives (challenges and facilitators) of key actors involved in the process (e.g., data, software, IT support providers). Human and environmental sectors (professional, academic, political, and industrial) were not the focus of the discussions; instead, the focus was on the ethical challenge of implementing a new technosocial program and developing a policy to manage the use of antibiotics in animal health. Nevertheless, many of the participants were invited to group discussions and interviewed separately to further explore their views on how the animal health situation is nested within the larger context of One Health. Ethics approval was received for the research phase of this project from the University Research Ethics Committee (anonymous); all participants were informed of the nature and scope of the project, the confidentiality mechanisms in place, and gave their consent to participate.

A Pragmatic Bioethics Approach

One of the notable challenges of contemporary methodologies is to account for multi-scale relationships, building a bridge between the individual, the social, and the global. Ten Have ( 22 ) introduces the community perspective as an appropriate approach to operating global bioethics. By examining recent conceptual advances in pragmatic ethics and empirical bioethics, we propose here the operation of a community-based action-research (translated in action-ethics). According to Jonathan Ives ( 23 ) synthesis of methodologies in empirical bioethics ( 24 , 25 ), an ethical analysis of a complex situation should be reflexive and focus on the empirical case under study, and not be biased by it, and so risk (over)valuing preexisting injustices rather than criticizing them ( 26 ). A multidisciplinary team of academics (veterinary medicine, bioethics, and law) and practitioners (veterinary, farmers, millers, association, and industry) contributed extensively to the empirical bioethics research project, which was embedded within and thus part of the above-mentioned feasibility study.

The team located at the Faculté de Médecine Vétérinaire at the Université de Montréal (FMVUM) was mandated by MAPAQ to conduct a large-scale empirical and social project. By reviewing, commenting upon, and critiquing the rudiments of this philosophical model, both the team and participants contributed to testing and enriching the model, as intended by good reflective practice. As an employee for this project, one of the authors, Boudreau LeBlanc (a Ph.D. student and empirical bioethicist in training), was given the task to develop a model to manage the ethical challenges with deploying consultation and concertation processes and to ensure the reflexivity of the experts and the deliberation of the collective (e.g., power relations, naturalistic, and philosophical reasoning biases). One solution to the challenge of bridging reflexivity and deliberation was to include the micro, meso, and macroscales in discussions, although this also introduced other ethical challenges, namely the subjectivity of each actor (e.g., their values, knowledge, and interests). Thus, it was obvious that a collective ethic was needed to set ground rules so that the actors could cooperate and co-construct the governance system. The feasibility study (2018–2021) conducted in Quebec, Canada, to evaluate the possible implementation of a monitoring system for the use of antibiotics in veterinary medicine was thus an ideal opportunity to study in situ how such a collective ethic could be implemented in a complex system in a way that leads to empowerment ( 27 , 28 ).

Ethics is crucial to guiding new means of collaboration through public-private-academic partnerships, but it also requires empirical methodologies such as those developed in bioethics and pragmatism. Pragmatic ethics is about negotiating conflicting positions that emerge from empirical situations (within the community) and are made accessible through philosophical reasoning ( 26 , 29 ). Ethics of science means (here, as a discipline) supporting the scientific community to question itself, individually as the responsible conduct of researchers, but also collectively through critiques of the nature of scientific research (in general and related to specific projects). Ethics (as in codes) is involved in the development of appreciative criteria and knowledge to judge conduct, evaluate the purpose, and propose appropriate governance mechanisms. Such an understanding of ethics could favor trust and lead to an agreement between experts and the community, which could then accelerate change. However, any criteria also need to progress through time via both rational reflexivity (a cognitive process) and collective deliberation (a social process). Without pragmatism in the ethics of science, researchers and communities will struggle to produce effective and adaptive networks, norms, and actions because the interests of the various stakeholders (as social or disciplinary) will not be articulated or aligned ( 5 , 6 ).

A practice of empowerment ethics should be developed by and for a community ( 30 , 31 ). In this Potterian One Health framing, empowerment ethics is presented as an alternative mode of governance that returns power to the key stakeholders involved, so that they can become actors of and responsible for the changes with which they will live ( 6 ). Such an understanding of ethics could provide a valuable foundation on which to build collaborative governance regimes that transcend academic, industrial, and public service limitations ( 32 , 33 ). One of the cores aims of empowerment ethics is to build and maintain the trust of the key stakeholders involved in the program ( 34 , 35 ). According to Davet et al. ( 36 ), three methodological processes should be used:

• Design a practical model of change,
• Set up a collaborative governance structure early in the thinking process,
• Co-construct a common language to give purpose to, and a framework for, points 1 and 2.

As theorized by Latour ( 16 ), such a method necessitates a socio-episteme-methodological approach, the sort which is embodied in One Health and, more broadly, in bioethics ( 37 ). In practice, such an approach needs to be distributed at various scales of observation, at all levels of knowledge, and across several analytical dimensions, explained by Callon et al. ( 14 ) as three intertwined operations of translation and by Latour ( 16 ) as the metrological manner of constructing scientific standards (see the synthesis tool in the last section).

This ethics-science-society organizational approach highlighted in Beever and Whitehouse's ( 37 ) work in Potterian bioethics is conceptually close enough to Morin's philosophy to be qualified as a “Penser Global” (“Think Global,” not “worldwide,” 2015) or more deeply to fall under the paradigm of human complexity ( 38 ), and requires an extended understanding of the sciences and an answer to the question: what is “truly” feasible? In a similar vein, the UN ( 39 ) has called for a science of sciences to develop an ecosystem of knowledge as part of ongoing critical thinking about science and policy. In this view, science must be seen as a complex (eco)system for which the “rules of the game” change over time as society “evolves” (e.g., changes in political, social, and physical laws). Consequently, we must also be cognizant of emerging biases and inequities, and so develop a practice in ethics of sciences and as an “ethic of ethics” based on a community-based empowerment ethics practice ( 40 ). Potter ( 41 ) highlighted the importance of supporting such collective ethics of science as a frame to determine what is “feasible” (i.e., the right knowledge and technical standards). This practice of ethics should thus be understood as a form of pragmatic “action-ethics” grounded in a strong critical thinking process that emerges from people and the social. This action-ethics practice combines several approaches proposed by empirical bioethics scholars ( 26 , 29 ): “inter-ethics” ( 42 ), “in-action ethics” ( 43 ), and “ethics ecosystem” ( 44 ).

The Framework

Assembling the methods.

To build reflexive governance for SICTs development, we propose a community-based action-ethics methodology. The methodology bridges expert evaluation and collective deliberation in a way to empower individual stakeholders and engage group leaders ( Figure 1 ). Project management in Research and Development must shift to a more integrative practice, coined here as adaptive Reflective-Evaluative-Deliberative cycle.

Framework in research and innovation to building reflexive governance for the responsible development of systems of information and communication technologies, hybridizing three types of reasoning are key to “reassembling” scientific paradigms in practice: 1. Evaluative as descriptive and traceable, 2. Deliberative as appreciative and prospective, and 3. Reflexive as knowledge balancing (1–2) to responsible policy. Reassembling is a “complexus” process (literally “being woven together”), here seen as an adaptive cycle and through the lens of the Huxtable and Ives framework in bioethics to support project management: 1. “Mapping” the ideas to generate a hybrid ethical theory, 2. “Framing” to be reliable to a case, and 3. “Shaping” a proper (micro) normative theory for change. We highlight the importance of ever questioning the whole process.

Evaluation (literally “the action of defining the value of”) is a key technique for bridging philosophy, science, and society through practical reasoning methods. Evaluation and deliberation must be conceived as independent methods given their distinct philosophical criteria and end (epistemology and teleology). To do so, reflexivity tools are crucial to avoid logical fallacies and to deepen and enrich the program value. However, these three methods benefit from being driven in parallel as interdependent methodologies ( 23 , 42 ). Therefore, the expertise in One Health should be based on more advanced knowledge of social science and philosophy, which should lead to an applied “social ethics.” The bioethicist can help bridge political, social, and scientific insights within and outside organizations ( 42 ). These insights must be based on empirical observations and expert advice, namely a “co-construction” perspective hybridizing qualitative methods such as Delphi, concertation, participative study, and focus groups 3 .

Deliberation (literally “to discuss collectively in order to decide”) is a common reasoning process in day-to-day life. Deliberation aims at collectively examining, justifying, and questioning reasoning. However, political and professional deliberations should be about ethical justification, not scientific or political ones, or any private interest. Deliberation can be based on critical and evaluative reasoning, which would lead to a ( disciplined ) form of “collective ethics.” Collective ethics could become an end for deliberation. Deliberative reasoning has a foot in the political and scientific “arena,” both of which may or may not be conducted ethically. Collective ethics seeks to establish “ground rules” as starting principles that are analyzed from multiple angles (all stakeholders), including from the sciences and society as a “hybrid forum” ( 14 ) 4 . Deliberation benefits from qualitative methods (including those mentioned above), especially when rooted in political and humanistic approaches, such as hermeneutics ( 42 ). However, deliberation must not intend to “test” ideas or even describe a group's narrative, as would be the case of these methods in empirical sciences. The aim is to reassemble , seek consensus and acceptability on the proposal, and deepen the collective reasoning. Expert understanding and scientific knowledge must be mobilized in recognition of their descriptive and analytical value during such reflective processes.

Reflexivity, as the quality and method for critical thinking, connects the real world (empirical) to abstract reflection (intellectual), allowing feedback from both sides: evaluation and deliberation. But reflexivity is tied to the (epistemological) challenges of both philosophy and science, to which pragmatism provides some answers. Judging reflexive thoughts is a matter of dialogues, integrity, and trust, even of bidirectional relationships, of a continuous search for consensus, and of collective duty to empower people to question these “thoughts.” Expertise from philosophy or science must be careful not to become a (normative) dictature ( 40 ), even under urgent calls for sustainability, precautionary, solidarity, and responsibility in public health ( 11 , 48 – 50 ). The competency of experts must be balanced with humility and compassion ( 51 ), or localism and experimentalism ( 52 ). The objective of reflexivity in pragmatism is to find ever better courses of action, the quality of which is established in light of the future (feedbacks). This “prospective science” is intellectualized as experiential learning (yet past), with the aim of archiving the common ground for cooperation, such as a vision, models, and theories (even formal agreements) of change ( 5 , 39 , 53 ).

Apply a Balancing Approach

Following Huxtable and Ives' ( 26 ) framework in empirical bioethics, the process is divided into three phases to organize the reasoning:

• “Mapping” the ideas to generate a hybrid ethical theory,
• “Framing” to be reliable to a case,
• “Shaping” is a proper (micro) normative theory for change.

In A Companion to Bioethics ( 54 ), John Arras understands this framing in bioethics as “casuistry,” an approach in ethics: “the [technics] of applying abstract principles, maxims or rules to the concrete case.” The “empirical case” (as used here) is a social collective on the edge of transformation, meaning to be reorganized or “reassembled” according to Latour's work ( 16 ) based on a unifying issue, here antimicrobial governance and digitalization. This Latourian perspective embeds the observer in the systems he is observing, which opens the possibility of a case study in empirical bioethics, focusing on the (intellectual) system of values characterizing and contextualizing these observers (based on a Ph.D. project in bioethics). To propose an ethical strategy for “managing” this system of values, which means deepening and seeking consensus among various interests, we adopt the logic of adaptive cycles in management, the one that gives rise to the perspective of adaptive governance ( 55 ).

Critical reflexivity is understood here as “balancing” reasoning. Reflexivity is a negotiating process between empirical data from interdisciplinary methods and rational insight from philosophical methods in order to find feasible solutions and long-term acceptable actions ( 6 , 23 ). “Balancing” means having facts and values as two samples for which we do not know a priori their weight. We must experience this balancing (as an ongoing process) to ground the normative knowledge that should support decision-making. “Fact” means knowledge and empirical observations ( in situ : resources, capacities, power, and will), while “value” is about philosophical questioning and self-critical reasoning. Values are given to qualifying, notably uncertainty, bias, even the usefulness and successfulness of decisions ( 56 ). Theories of value, as academic knowledge, archive notable critical reasoning paths. However, values, criticism, and reflexivity are also subjective.

Reflexive balancing, coined by Ives ( 23 ) with Heather Draper ( 25 ), is an ethical (meta)analysis combining methodology for interdisciplinary and critical reflexivity. The outcome can support self-governing processes that empower the community. At the collective level, reflexive balancing must begin at the start during initial planning, sampling, and questioning ( Figure 1 ). This upstream ethical reflexivity and expertise have included the active role of FMVUM team members to conduct the interdisciplinary methodology. This means diversifying the disciplinary assets at the start; here meaning expertise in ethics, laws, technologies, and medicines, and more broadly community representatives. Note that facts and values are not dependent—as in “reflexive equilibrium” ( 23 , 57 )—but interdependent through the reasoning process. For example, sometimes facts justify actions that go far beyond what is acceptable and thus go against accepted human values; their application changes the “rules of the game.” Alternatively, values can justify change prior to evidence, as articulated in the principles of precaution, solidarity, or responsibility.

Social negotiation, a key concept of the deliberation reasoning ( 58 ), can support ethical analyses when applied to the evaluation of multi-actor systems of values as a “collective thinking process.” Ethical negotiation is enriched by co-construction approaches conducted at all steps of the program development and by acknowledging multiple scales of translation: here the expert, team, and community ( 14 ). At the expert level, the approach of Abma et al. ( 42 ) to bioethics was used to interact with actors (the Ph.D. student as a formal member of the FMVUM team) to deepen their understanding and positioning. At the team level, Samuel et al. ( 44 ) coined the model of “The Ethics Ecosystem” to empower stakeholders in the development of the governance system structure, functioning, and purpose, notably the influence of allocation of financial resources, conflicts of interest and shared responsibilities. At the (collective and biotic) community level, Ives' ( 23 ) methodology for empirical ethics provides guidance on how to negotiate stakeholder values and avoid fallacious reasoning through a reflexive, interdisciplinary, and pragmatic balancing method.

In summation, how to connect reflexivity and deliberation in One methodology with One (collective) goal? Where should ethics occur in decision-making processes to empower critical thinking from individuals to the whole organization? Is it by the mandating government (a department, e.g., MAPAQ), the responsible team (within the university, e.g., FMV), or individuals (representatives of private interests)? The three kinds of reasoning—reflexive, evaluative, and deliberative—integrate distinctive approaches from empirical bioethics into the project management process ( Figure 1 ). All three steps refer to methods that have distinct philosophical standpoints (i.e., qualitative criteria of scientificness and ends). For instance, deliberation is about collective discussions and consensus-seeking, while evaluation refers to critical analysis (scientific, political, economic, etc.), but must also be ethical, meaning self-critical reflexivity. This linkage implies the opening of a dialogue “in the field” between experts, here in veterinary practitioners, epidemiology, data science, technology governance, etc., with different social perspectives (professional orders, industrial associations, interest groups, universities, government, etc.). In the spirit of the community-based action-ethics methodology, the intellectual assemblage must be conceived prior to the case study as an applied framework (Phase 1: Mapping). The goal is to anticipate core issues, first by thought experiments ( 59 ). Pragmatism, based on the relationship between theory and practice, focuses on courses of action and uses reflexivity to question and advance them (phase 2: framing). The outcome of pragmatism is empowerment often based on communication and/or education tools (Phase 3: Shaping).

Applying the Framework

Deliberation is part of decision-making processes and in the right “location” to position ethics in governance. Mapping means here, first, acknowledging an adequate theory in ethics (see above A Pragmatic Bioethics Approach) and, second, choosing the best deliberative strategies to put it in practice (see below). A hybrid methodology that connects reflection, deliberation, evaluation and decision in a systemic process is detailed in Figure 2 . However, deliberation can become a way to scale up critical reasoning at the social level if mobilized for a collective ethic, rather than to plan the technicalities of the operationalization of a project. To be systemic, such a process must “exist” as a core functioning process of a community. Although to be effective, deliberation must be constructive and useful for stakeholders. Ethnographic methods can be used to plan and design the fieldwork to ensure the deepening of deliberative reasoning ( 60 ).

Assembling the methods for collective thinking to orient the project of a data and information system for antimicrobial surveillance in Quebec: A decision-making process that locates ethics by default at each stage requires a reassembling of the program development cycle of conceptualization up to implementation and evaluation. This decision-making process becomes community-based by the bridge it creates between deliberation (Step 2) and reflexivity upstream, i.e., before and during the conceptualization phase. This “preparatory phase” becomes a process of planning (Step 1) and evaluating (Step 3) decisions in order to co-build collective ethics (for/by the community) that empowers individuals to think critically and the community to critically evaluate based on dialogue, concertation, and a proper environment for knowledge translation.

This reflexive “roadmap” with several checkpoints ( Figure 2 ) guided the feasibility study (2018–2021) conducted in Quebec, Canada, to evaluate the possible implementation of a monitoring system for the use of antibiotics in veterinary medicine. The deliberation process initiated in 2019 with a “Proposition” (Step 1) toward in-depth consultations and interviews to coin collaborative principles (2019–2022, Step 2), as well as the work of expertise to “engineering” a model (2019–2022, Step 3) to ethically negotiate at multi-scale (micro vs. macro) perspectives on conflicting discourses ( 61 ). Such roadmaps are useful for strategic and ethical leadership. The iterative process is key to building leadership in a system involving shared responsibilities between coordination (the team), several stakeholders, and policymakers. Leadership is about positioning and evolving, which means giving a clear, yet visionary, position about: Who has a job to do? To what end? and For whose interests? ( 34 , 62 , 63 ).

Setting the Scene

Setting the scene ( Figure 2 , Step 1) is the first step for thinking about change ( 64 ). In the case study, this stage began in 2019 with concertation that brought together 60 stakeholders 5 . The “Scene” is about setting the “vision” ( 65 ) and guidelines for good “preparation” ( 66 ) and “regime” ( 32 ) for managing the change. This step requires good coordination of expertise, resources, policies, and infrastructure, and their proper methodological assemblage with theories, concepts, and principles: we need a “global roadmap” of the case “problematization” and then possible avenues for operationalization ( 67 ).

Maps or “normative knowledge” of any kind (e.g., laws, techniques, standards, and treatments) must be designed in close collaboration with the people to whom the norms apply. Norms must be co-constructed, emerge from large social collectives, and be deliberated through an adaptive cycle of iteration. Normative thinking will lead to strategy (e.g., action plans), but must first (Step 1) build on ethical analysis. Strategic and ethical thinking must eventually hybridize into one process of reasoning through iterative deliberation and learning from feedback (Step 2).

Potter and Lisa ( 68 ) critic “sustainability” for being too strategic and not ethical enough, and highlights a way out through deliberation. Deliberation constitutes a large and every expanding methodological field of study in sociology ( 69 ), participatory research ( 70 ), management ( 71 ), governance ( 72 ), etc., that we must build on. However, as the “last step” (Step 3), ethical analysis is crucial for questioning the “terms and conditions of mandatories” over the programs or its actions before “re-proposing” (Step 1) for deliberation ( 6 , 66 ).

Collective Discussion

The collective discussion consists in bridging the general with the particular ( Figure 2 , Step 2). In particular, deliberation requires a systematic intake of credible information from the field , such as “consultations” and “interviews” could provide, which describes the community and its understanding of the change at stake. In that sense, deliberation needs to be data-driven , but not exclusively, because it must also be knowledge-driven by a process of transfer and “translation” ( 14 ). In general, the deliberation must be based on a vision of the change, like the one depicted in the “opening concertation” (Step 1) as well as transferable information from the academic literature.

The purpose of deliberation must be about governance: its architecture and future. For example, the case study began by deliberating on the form and content of the technology (2019–2020), then on the value of its SICT program and development (2021), and (to come) on norms for responsible conduct. Governance must be evaluated and deliberate at each “start” ( 72 ). This means building a dictionary from technological terminology to ethical meaning (Step 3). These last components of governance are immaterial but essential to envision a collective future ( 52 ). Meanings must be standardized (a dictionary), but also critical (reflexive governance) to learn and progress ( 36 ).

This mindset refers to system thinking ( 73 ). In practice, system thinking implies pursuing the deliberation process after the “end” of a specific mandate (iteration, Step n). The emerging vision and models provide insights for sharing the responsibilities, which means to learn and setting an ever better future —the scene (Step 1). For example, by laying the groundwork for a new proposal on the formal perspective of an Agreement in Principle for Responsible Animal Health Data Sharing (2021–2022). This Agreement must be initiated by design to acknowledge the “right” principle to apply for good collaborative governance ( 32 ) without delaying the speed of the change process ( 74 ).

Ethical Analysis

Ethical analysis, as a way to qualify the good and right “with discipline,” must be at each step of decision-making processes ( Figure 2 ). However, the disciplinary ethical analysis must be at the heart of governance programs (Step 3). Although ethical analysis must give the basic tone to reflexive balancing, reflexivity benefits from an abductive dialectic: to be tested by pair review, as a “discussion of multiple perspectives,” and case study, as seeking for a “consensual proposition.” In other words, reflexivity gains in value by the constant search for its democratization: aiming at spreading its methods, like critical thinking practices, and its result, the evaluated climate, resources, and capacities, in the case (Step 2). Moving from deliberation to the scale of a social phenomenon requires a solid reflexive “terrain,” as depicted in Paquet's work on collaborative governance ( 75 ). To emerge from various stakeholders, reflexivity needs an appropriate “Habitat” to express itself, such as research hubs, living labs, innovation hubs, or business incubators, among which Observatory on the Societal Impacts of AI and Digital Technologies (OBVIA) supports the development in the Québec public-private-academic “landscape.” To be inclusive, this process involved first defining problems collectively and deepening positions qualitatively (Step 2) but, therefore, an ethical analysis to progress this collective position (Step 3) considering social ethics, which “rules” may also need to be (re)set for a new “scene” in law, health, and technology (Step 1).

Ethical reflexivity is proactive in the manner of an adaptive and learning management process ( 76 ). In practice, the bioethicist's reflexivity and the team's expertise must be synchronized to scale up the (micro) personal insights to the (meso) collective, then (macro) social level ( 23 , 42 , 44 ). For instance, the bioethicist in this regard joins the FMVUM expert team which gives, therefore, a solid interdisciplinary ground to connect analytically with the social discourses in Québec animal health sectors. The bioethicist must shape and question the tools guiding the pragmatic negotiation toward an ethical (“pro” to “post”) position, without deciding himself the sense of that “final” positioning, which must rely on an ever-evolving collective ethic ( Figure 2 , Step 2) 6 . However, the collective position must take strength in the leadership of official entities (sponsors, e.g., government), but not rely on the “belle-parole” of consensus normative principles (see the distinction between normative and appreciative knowledge in the last section). The leadership of the team in charge is based on two justifications (Step n). In the short term, this justification takes its strength from the political legitimacy, for instance, the Government of Québec's GPHP statement: through the periodic renewal of the “terms and conditions” by financial, regulatory, or declarative means. In the long term, this justification becomes powerful, however, this appreciative “parole” depicts an acceptable future having the capacity to impel a culture of empowerment ( 6 ).

Iterative Process

Ethical analyzes understood as ongoing critical thinking processes are a key functioning characteristic of reflexive governance. The ethical analysis aimed to criticize and give purpose to:

• Strategic plans [feasibility and acceptability ( 78 )] developed collectively to negotiate social discourses ( 58 ).
• Decision-making processes conduct at multiple scales—the expert, the team leading the project, and representatives (e.g., sponsors, group leaders)—as they choose what best insights are meant for the community and about the future of society.

For example, One Health's scientific questioning is about how to develop a strategic (feasible vs. acceptable), judicious (risk vs. advantage), and responsible (short vs. long-term accountability) surveillance program for antimicrobial use. Conceptual roadmaps are useful to nuance and negotiate the positions of the various stakeholders (i.e., perspectives, roles, and missions) about the meaning of what is good , to move toward a consensual justification and thus binding decisions. The usefulness of such tools is not in their mapping of social system complexity ( 79 , 80 ), but in mapping the system of values, interests, and perceptions ( 81 , 82 ). A mapping of ethical frameworks and normative theories is crucial for the ongoing questioning about possible biases and finding ways to manage these appropriately when and where they arise.

When assembled with bioethical methodologies or approaches to guide the bioethicist in the use of theories in practices, deliberative maps (as the one depicted above) became pragmatic analytical “tools” and could support professionals or other actors in their day-to-day decision-making. These hybrid tools can be designed for individual or collective use. These tools focus on structuring critical reasoning to get through complicated choices; they aim to identify, nuance, and contextualize tensions that transcend the decision-maker. These tools can also be seen as evolving roadmaps of the One Health paradigm and an advance in applied ethics (such a tool is proposed in the last section). When applied to a case, these roadmaps emerge from a confluence of expert and community perspectives as both have relevant viewpoints. However, roadmaps should evolve based on experience, not mere intuition. Real-world feedback is a core asset for the ongoing process of reassembling what is collectively conceived as a good change supported by intelligible methods from the field perspective.

Applied to the case of a feasibility study in veterinary public health, in Québec, Canada, we will see how methodological innovations are implemented by people, institutions, and theories in constant evolution: a complex that “weaves together” three dimensions of “global” existence (structural, cultural, and intellectual) that we have called “community” above ( 6 , 15 ). This sociological perspective on the organization of science in society clarifies that there is no new generation of “social” but always new forms of reassembled structures, functioning, and/or purposes ( 16 ). This communitarian perspective means that much of the power is distributed in the social (of which people are the elementary unit and society is the overall organization) than what would appear to be the case under a centralized or even hierarchical understanding of authority ( 22 ). Answers to the question “how do we democratize deliberation” must find clues in “how the social “perceives” its own normative theory” in a case study: the “collective ethics.”

Learnings From Sustainability

A commonly used ethical tool for bridging reflexivity and deliberation in the field of animal health and environmental risk management is to refer to the pillars of sustainable development which, by their interface, bring out a set of values as emerging fields of study: viability, livability , and equity . These fields act as a driving force for interdisciplinarity, notably political economy and ecology ( 83 ). However, many scholars have criticized and advanced this approach, and from which One Health should learn ( 52 , 62 , 68 , 84 ). For example, sustainable development aims to manage—i.e., (re)maps, (re)frame, and (re)shape—based on an ongoing process of balancing the value of short vs. long-term goals ( 26 ), such as mitigating the overall risk of resistance, with its short-term goals of health care services for local communities with antimicrobial governance norms ( 6 ). The sustainable analysis could become a tool to examine feasibility studies and manage its related ethical dilemma, for instance, short vs. long-term and private vs. common considerations. Even, it could be useful if it means degrowth as not-developing pharmaceutical or reduce the use—i.e., a reframing for global acceptability as a Potterian's socio-ecological concept ( Figure 3 ).

Responsible conduct for governing sustainable technosocial development [see Potter ( 6 )].

The real world is also much more complex than these three pillars and values of sustainability, because the observer evolves, learns, and “thinks [s] in systems” ( 73 ). Norton, who works on the “philosophy of sustainability,” explained good development might be rooted instead in a “localism, experimentalism, and multiscale analysis” approach ( 52 ). Norton's understanding of sustainability allows for organizational resilience built on adaptive agility of collective policies: the adaptative management ( 85 ), allowing for several scales of observation, here the bioethicist, the FMVUM expert team, and the community as a whole ( 86 ). This learning ability is based on a functioning cycle: reflexivity, deliberation, decision, and evaluation. By reconnecting the cognitive and social spheres by introducing a multidisciplinary team at their interface called “Frontrunner,” Loorbach lays the foundation for an alternative model of governance that decentralizes this four-step thinking process within the network. Frontrunner's goal is to guide the transition management, notably toward sustainability and stakeholders' empowerment, for instance, about their digital environment, responsible conduct, and norms of practice on antibiotic use. Managing here means “reassembling” the decision-making process to clarify who decides, even more, who is accountable and expected to justify; and who evaluates, that is, who provides feedback, including useful learnings to improve programs and actions ( 87 ). “Reassembling” implies a dynamic planning process well before a crisis occurs, in order to quickly involve actors with short notice to “reorganize” in (infra)structure and culture ( 16 ). To implement these new sociological models with systematized methods, we also need to use collaborative ethics ( 36 , 88 ).

Learnings From Governance Systems and Community

Community-based approaches refer to collaborative and learning mechanisms: Let us propose the idea of an “adaptive co-management of transitions.” Collaborative thinking is facilitated by systems of information and communication technologies (SICT) that scale data sharing to knowledge transfer, translation, and applications. The philosophy advanced in the case study was based on learning: antibiotic use surveillance supporting both national antimicrobial governance policies through public reporting and refining individual conduct through voluntary benchmarking.

Although there have been technical advances with SICT, an ongoing challenge in ethics remains to bridge the gap between experts and the community. A possible solution lies in critical deliberation and evaluation ( 89 ). Along this line of thought, Rüegg et al. ( 63 ) present an approach to collectively plan and evaluate sustainable health interventions by thinking beyond the frame to working on a strategy to support convergence and make change happen. In alignment with this perspective, Bordier et al. ( 90 ) assess the methodological and epistemological challenges behind the evaluation of knowledge emerging from “multisectoral collaboration” through “interdisciplinary insights” ( 91 , 92 ). Multisectoral collaboration needs to be evaluated, notably with a focus on the performance of the surveillance process ( 4 ), on its systemic process of sharing information ( 91 ), and on the consequences of the resulting policy ( 36 ). However, one of the most challenging aspects to evaluate is certainly the value, the credibility, and the validity of One Health knowledge and policies across different domains at the time of its justification to accelerate its application ( 18 , 23 ). Some answers may be found in pragmatism and how the community can learn.

To ease the functioning of SICT, one of the upstream goals must be to develop a common consensual language that puts everyone “around the table” on the same “terms” (terminological and ontological). “Language” here means helping each person or group to move beyond their position and broaden their perspective to a collective reference point (epistemologically and teleologically). “Common” means a collective assemblage, joined under one “roof,” in constant “recruitment” of social actors, diverse (axiologically) in problems, abilities, and ideas, but all interested in managing the same “problem” ( 14 ). The case study bridges the emerging collective ethics of stakeholders and the social ethics emerging of collaborative governance theories ( 32 , 72 , 75 ) by deliberating on an Agreement for Responsible Animal Health Data Sharing. Governance is about administrative and political structures but also goes beyond this, as a regime and vision whose rudiments must be materialized in intelligible documents accessible to all, such as an agreement, charter, declaration, code, etc.

The case study highlighted the challenge of transforming a collaborative regime (as a philosophical theory) into a governance body (administrative practices) whose functioning is acceptable for stakeholders—i.e., justified by collaborative ethics—and still meets the expectations of sponsors, mandatories, and society ( 34 ). The solution found was in iterative processes: collective ethics and governance regime must emerge from an adaptive cycle of ethical decision-making processes and from empowering leadership materializing the process in action ( Figure 2 ). This new cycle (proposed for 2022) will involve the signature of that Agreement, which will “shape” the development of the data platform. To ensure the trust of stakeholders from the start to the end of the biosurveillance programs, which will evolve to expand data input across sectors and the overall outcomes of aiming to implement the One Health perspective, the Agreed Principles must progress as well (post-2023).

As Abma et al. ( 42 ) outlined, bioethicists are key assets to co-evolving practices, as “inter-ethics” (for proactive and interdependent) bridging the gap between the leadership team and the community. Inter-ethics opens deliberation on the (intern) program and (extern) partnership policies and values. Bioethicists are key to the functioning of large organizations such as companies, research groups, and public services. The functioning transcends (as singular) the ability to foresee a decision-maker, as the Chief executive officer (CEO), even the Chief information officer (CIO). Hermeneutic approaches, such as the maieutic process of Socratic dialogue ( 93 ), or others from applied ethics, such as casuistry (case study), should be implemented as a day-to-day approach for improving the critical thinking practice (as singular: CEO and CIO), even allowing for collective and deepen deliberative reasoning ( 58 ). The bioethicist leading these ethical approaches should not shape the problem in practice ( 94 ), but support the process of intellectual mapping and interdisciplinary framing ( 26 ) to help stakeholders design and manage their ethical shaping process ( 40 ).

The role of the bioethicist is to provide an adequate habitat for collectively “thinking global,” not to prescribe global thoughts ( 23 , 42 , 44 ). As illustrated by John Godfrey Saxe's (1816–1887) “The Blind Men and the Elephant:”

And so these men of Indostan

Disputed loud and long,

Each in his own opinion

Exceeding stiff and strong,

Though each was partly in the right

And all were in the wrong!

The main criticism of global thinking, as here depicted in terms of communitarian approaches with the “elephant,” is about the sense of urgency: Is their time for this discussion between “Indostan”? Antimicrobial use calls for rapid and radical change, yet incompatible with cultural changes requiring long-term collaborative, democratic, and reflexive processes. In the animal health sector, urgent and radical change means the commitment of stakeholders who are complexly organized as shown by Majowicz et al. ( 79 , 80 ). Moreover, long-term collaborative processes mean reconciling a diverse system of deeply distinct ethical values ( 45 ), notably the views of the agri-food industry vs. vegan activists, or even traditional indigenous knowledge ( 34 , 95 , 96 ). The case study shows that co-building a collective ethic tends to accelerate the commitment of stakeholders by linking their actions to an awareness of the consequences, which leads them toward a culture of change. Collaborative governance, here defined as a state of mind ( 72 , 75 ), even a community-based approach ( 97 ) or a communitarian paradigm ( 22 ) rather than an (administrative) governing body, accelerates this cultural bridge to the future ( 5 ). However, to be collaborative, governance must also acknowledge specific and generic concerns: sometimes even questioning collective paths in the face of local issues (bottom-up) or front of societal values (top-down). This abductive process (“local-to/from-global”) necessitates the integration of top-down (e.g., government to citizens) and bottom-up (e.g., citizen to government) modes of governance.

Learnings From Pragmatism

The case study was built on a pragmatic approach to ethics. Whereas, the good relies on imperatives (yes/no answers) in a deontological or legal perspective, the pragmatic ethics approach shifts the emphasis from the “imperative” to a deeper collective deliberation process that democratizes thinking about such ethical criteria as good, right , and better . Pragmatic ethics recommend, first of all, putting aside the prioritization of which is “right” or “wrong” between scientific, traditional, and alternative knowledge and beliefs ( 87 ). The priority is to act on tipping points, such as the need for surveillance of antibiotic use and thus for the governance of its SICT to refine practice, by seeking consensus between the parties involved on how to do it ethically ( 18 ). In practice, Callon ( 98 ) named these as points/nodes of common problematization and explained how convergent perspectives and interests stimulate the recruitment of ever-increasing numbers of actors around the common problem to solve. This is about assigning duties for what and to whom, i.e., the “pragmatic sharing of responsibilities.” Moreover, responsibility is linked to resources, so deliberations must focus on the actor's duties, assumptions, and capabilities: does each stakeholder have the necessary resources, opportunities, networks, technical abilities, theories, or other necessary “tools” to achieve their goal (their responsible mission)? In the case study, all the actors involved—industry, activists, and researchers—agreed on the importance of solving the antimicrobial resistance problem, even if it was for different reasons, and to archive this collective position in an Agreement, whose principles would detail these contextualized duties. Under this pragmatic view, the core problem was no longer the “Why” to act, but the “How” to interest all stakeholders to act collectively and in concerted fashion, i.e., the “common problematization.” This led us to apply ethics and its rationale to share responsibilities appropriately (e.g., duty, ability, and capacity to act) among the key stakeholders.

One of the core challenges of One Health is to operationalize pragmatic processes (the “how-s”) and build consensus for action. Indeed, some deontological positions are inevitable (the “why-s”) and create conflictual ethical points of view ( 18 ): Who should be responsible? Which core values to prioritize? Is it for the benefit of humans (anthropocentrism), all living beings (biocentrism), or communities (ecocentrism) that we should act? Mermet's work on social negotiation ( 58 , 69 ) can help bridge the gap between Social and one's thinking . Designed for strategic analysis, social negotiation can provide pertinent tools to bring into practice Latour's framework [see Bilodeau and Potvin ( 99 ) in public health].

However, strategic analysis is a “descriptive to normative” knowledge translation process. This translation must be combined with an ethical analysis to prevent fallacies. For example, medical diagnosis (prescriptive) must be based on history and Biology (descriptive), but overall, the transition from one to the prescription of a particular treatment (an antibiotic) must be based on the clinical judgment of the physicist. The action-ethics framework presented here proposes such a “descriptive/appreciative-to-normative” knowledge translation process applied to political processes. Defining the right course of action, meaning the “justify normative knowledge” that will lead to responsible actions, requires the involvement of many people from various disciplines. Appreciative knowledge is the key to expanding the perspective, for example, the Government of Canada's Categorization of Antimicrobial Drugs Based on Importance in Human Medicine, which is normative, seeks to prevent harm by adding such antimicrobial governance insights to medical practice. The “inter” of the “interdisciplinary” is about quality: Who or what is bridging? Too often, the “appreciative” fields of knowledge, carried by the humanities or the human sciences, are underrepresented. Co-building collective ethics as a structuring process of a One Health transdisciplinary program will help to highlight, “in action,” those missing pieces for normative practices.

An important criticism of pragmatism has to do with relativism. Who actually decides what is right after all? Notably about data access or even antimicrobial governance. Is it the Law, the people, the market, the activists…? In terms of relativism, these dimensions—legal, civil, financial, associative—pose “truths” of equal importance. Pragmatism in ethics does not, in any way, reject the importance of deep debates, nor the negotiation of these dimensions, or the radical questioning of the way things are done ( 18 ). Pragmatism cannot be achieved without these in-depth reflections to define broadly which better future we want to achieve collectively ( 5 ). Therefore, pragmatism is more about deliberation than decision, even more about education than action. However, the main characteristic of pragmatism is, indeed, action-oriented: deliberation and education process must lead to tangible, practicable, and (if well-done) prospective knowledge—such as collective vision and goal. Such an objective for discussion leads to determining agreeable points to act at a specific time and place and acknowledging a need for an ongoing process of evaluating, criticizing, and adapting those pathways of action. These enable progress for/by the community while recognizing potential harms to individuals and the environment (suffering, vulnerability, and existence). Giving credit to the community, pragmatism justifies having representatives (as an expert or social voice) capable of deepening and raising positions anchored in complicated scientific phenomena and complex system values.

To know who decides, the question should be: “Who is the most credible to carry out the collective work of deliberation?” and more importantly, “Who is responsible for it?” The case study showed that multidisciplinary teams mandated by public authorities can become key actors to structure transdisciplinary projects—a Transprogram —as a “flying team” in the collective creating a dynamic bridge between the expert and the whole ( 46 ). The team becomes a binding, critical, and justifying force: public values (democratic government), academic knowledge (“balanced” expertise), and a “targeted” community. A “transprogram”—a neologism that implies a “transdisciplinary” in action ( 56 , 89 )—can be conceived as a continuous process of knowledge building and collaborative governance ( 16 ). This forces us to complexify our understanding of the “theory to practice” challenge. It is not simply a question of bringing knowledge to action through “communities of practice” or other forms of collective ( 100 , 101 ). It necessitates theoreticians (e.g., philosophers and mathematicians) develop the “practitioner” reflexivity personified by in situ questioning of what we must do as a person and how to empower such critical thinking.

We need to organize what we—as a collective—are saying. Transdisciplinary—as the increasing relationship between sciences, technology (e.g., the industrial products), and society—introduces a confusing mess of terminologies, methodologies, and philosophies that must proceed throughout the program (as political, scientific, and societal) development. At a minimum, proceeding with this “mess” in practice requires ethics: critical thinking, codes of conduct, and responsible organizations for an ever-learning process in ethics. Extended to society, a postnormal philosophy of sciences ( 56 ) proposes new models that recognize the value of falsification ( 102 ), but extend the theory about the Structure of Scientific Revolutions ( 103 ) to include new tools from sociology, anthropology, and technology emerging from the digital age ( 74 , 104 ). As presented in Figure 2 , program development must return to the scale of people (theoretician, practitioner, “fieldworkers” and representatives) but be institutionalized as a democratized deliberation process. The challenges of such collaborative governance ( 72 ) and transdisciplinary research ( 105 ) are to be contextualized in a constantly changing world without losing the local perspective as developed in Morin's complexity paradigm (see the synthetic tool in the next section).

A pragmatic bioethics approach will be crucial to achieving this goal. To seek precision, the sciences tend to fall into the specialization process (disciplines and techniques) and lose the “big picture” as Saxe ( 106 ) has noted. On the other hand, philosophical reasoning, methods, and theories in ethics may lack an operational strategy for seeking and driving empirical and practical change toward empowerment and political sharing of responsibilities. Both aspects need to be integrated into an interdisciplinary process to proceed to a sustainable course of action, and this is where bioethics can step in ( 107 ), to act as a translation mechanism, and so become the missing link to materialize interdependency ( 37 ) without resorting to disciplinary reductionism ( 108 ).

How can we seek Global acceptability? How can we mobilize science paradigms to set a “feasible” normative theory leading to a co-built code of ethics for empowering the community? ( 6 ) Shaping ethical tools, such as codes, methodologies, and education resources, are core assets for sustainability because they pave the way to basing its operation (the result of integrating the three pillars) on values (e.g., its equity, liveability, and viability): each action must be rooted in in-depth justifications (the values) bridging sciences and ethics ( 5 ). One Health benefits from such tools, here called “bioethical” referring to this Potterian “bridge,” in the format of reflexive, deliberative, and evaluative practices. The bioethical tool below contributes to deepening methodological reasoning to guide toward more practical pillars, but still rooted these in the core values of sustainability ( Figure 4 ).

Framework to broaden critical thinking used in the case study to building reflexive governance: A bioethical tool, “mapping” One Health methodologies and teleologies, to help in “framing” and “shaping” the work to deepen the meaning of persons, groups, and the community reasoning to broaden the collective perspective and co-build a global vision, but still locally collaborative, of One Health governance programs. Designed in empirical bioethics by case study approach, in the Quebec animal health community, the one emerging from the commonly shared One Health problematization of antibiotics (production, use, and resistance) linking Government Ministries with shared jurisdiction over animals, human, and environmental health, this tool seeks to broaden the critical thinking of the expert training in bioethics, the coordinating team members with leadership, and stakeholders. Constructed by abduction based on the revised theories and the case study depicted as a community-organization that evolved its practice. This tool must guide the reflexivity of each person at each of these collective discussion steps.

Broadening the vision in Saxe's poem means being more integrative, even appreciative. These levels of knowledge are about building consensus and deepening the reasoning of each stakeholder from their own point of observation to define the problem and interest in its resolution. A vision of change must transcend all dimensions of existence to question fallacious reasoning all along with the life of the surveillance program coming from integrating levels and points ( 26 , 42 , 44 , 105 ).

Figure 4 proposes three practical questions at each interdependent interface—(1) evaluation, (2) reflexivity, (3) deliberation—to share responsibility and “take a position.” First, “plan the right positions to see,” as an evaluator , in terms of infrastructure and paradigm, and then “coordinate the scene and assemble collaborations from these positions” and diverse knowledge (several perspectives per level). For example, to see and coordinate, search for, or create a governance body with authority over financial planning, institutional sustainability, and stakeholder accountability ( 36 ). Collaborative governance increases credibility and trust ( 32 ), especially when the partnership that embodies this governance diversifies the collaborators. Then clarifying the rules of the game facilitates comanaging the empowerment process in terms of “adaptive governance systems” through deliberative processes. Taking a position means balancing knowledge from experts and value from sponsors [formal and informal terms and conditions ( 23 )]. Note that (e)valuation is a continuous ethical-scientific process that must be pursued throughout and collectively on as many sub-dimensions as possible, and involves balancing the three identified here for a valid (pro/post)position (green) and the trans-level of knowledge (red) in time and in forms that support decision-making.

Evaluation ( 1 ) should be a continuous process, as the concept of surveillance and program evaluation understand it, but also includes the observers as a thinking unit to study the impact of the technosocial initiative and its policies. Observations should be planned upstream, based on both understanding and vision, to locate the evaluating -observer in an ethical and strategic place to see. Vision means a roadmap of what is foreseen as good , envisioning a better future . Maps are factual models built on-premises (values). Deliberation ( 3 ) as a social negotiation process is crucial to translate knowledge, vision, and values into policies. Deliberation implies negotiating the interests of the parts, judging actions, norms, and singular values in front of the common interests. Reflexivity ( 2 ) is the solution to an ethical, pragmatic negotiation.

The bioethical tool ( Figure 4 ) integrates the three pillars to “Thinking Global” (existence, knowledge, and observation: Table 1 ) describing the intellectual world in which evaluative and deliberative decisions must be made:

Reflexive aspects to think “Global” about, before and while planning and deliberating on the surveillance program a .

• Dimensions of existence (the empirical): the experience of life as a person and as a collective (family, society, and humanity) whose experience and context become accessible from the attentive “eye” and reflective strategies conducted in a community as a space/time, transgenerational and multispecies concept ( 22 )—“What exists?”
• Levels of knowledge (the cultural): sophisticated tools ranging from technologies to theories helping to deepen reasoning, to justify decision-making, or directly to change the conditions of existence—“What should it be?”
• Points of observation (the intellectual): the intellectual lenses leading to subjective action of the expert and from the community (as thinking units, not things) to assess the effects of decisions on several patterns and scales—“What do we want to do?” “What could it be?” and “How will it be done?”

The Dimensions of Existence

The bioethical tool ( Figure 4 ) extends the scientific perspectives of “experiencing” the existence —the observable (objective) and the being (subjective). Physics, for instance, is not only a scientific discipline but also a dimension of existence ( 15 ). As a knowledge, Physics describes the complexity of the physical world (from the Greek “physis” means nature); thus, giving physicomathematical architecture to science paradigms toward natural laws, notably in chemistry, biology, pharmacy, and also engineering, medicine, management, and any kind of evaluation techniques on antibiotics or environment ( 110 ). As a dimension, Physical is about space and time from which empirical phenomena emerge; thus, providing (predictive or reflexive) insights—the pharmacokinetics of antibiotics, the probabilities of resistance genes, the microbial ecology studying natural evolution, and ecotoxicological geography of heavy metals ( 111 ).

Physics, commonly referred to as objective, natural or factual understandings, is one of the fields of descriptive knowledge , but the “empirical” is also about the collective existence in that physical world, involving norms and standards. Some normative knowledge is based on the empirical description: when observations become physical laws through experiments or even when these laws are translated into strategies, techniques, and technologies through the lens of understandings and values, for example, a standard based on the “ecosystem services” or “footprint” communication tool ( 112 ). Although mechanical laws and probabilistic models translate the physics of the world into understandable terms and tools, it does not mean that the whole physical world is, at some point, entirely understandable or even partially controllable (the positivist fallacy), especially when it is necessary to cross dimensions (the Morin bio-socio-anthropological model ), such as the psychology of antibiotic users and the ecology of antimicrobial components. Recognizing this fallacy, descriptive knowledge must not prescribe actions on its own—e.g., the statement: “This antibiotic will cure that disease”—without being understood through the lens of scientificness (e.g., validity) and as human power and will, interwoven with belief and values, and embedded in conflicting interests and missions ( 45 , 56 , 87 ).

Alongside Physics , several other dimensions make it possible to analyze humans within their own existence : the Social and Anthropological dimensions of life. As for Physics vs. Physical , all those 3 dimensions are related to knowledge, among others, in psychology, ethnology, and axiology, which gives us access to its perspective. From those perspectives, we—as humans and humanity—experiment by observing and being: the dualistic (objective vs. subjective) experience of life ( 113 ). The need for both Object and Subject perspectives explains the usefulness of integrating natural, social, and human sciences. Subjectivity , to be understood here as reflexivity , brings the missing piece to positivism: the so-called postpositivism. Values, the missing piece, respond to uncertainty ( 56 ). For instance, political decisions on antimicrobial use and the progress of science in pharmacology and ecology must be proactive and responsible (the precautionary principle), despite there being no evidence (at least yet) on all the mechanisms of antimicrobial resistance, nor a full understanding of microbial evolution ( 1 ).

The challenge is to “Think global”: How to integrate all these dimensions, acknowledging the pluralism of perspectives and values? Moreover, how to progress decision-making with critical reflexivity, but without rhetorical fallacy? The answer points toward deliberation and evaluation to deepen everyone's positioning. This process must emerge from science and society (e.g., the Intergovernmental Panel on Climate Change, IPCC, or any public hearings, association, or platforms) as a community-based action-ethics methodology, although they will for this bridging process is not a given at the start.

Levels of Knowledge

Decisions are fundamentally subjective, because humans—expert and non-expert—are beings, not things, and think. Thus, some knowledge is more likely to change, while others are more stable over time ( 23 ). For example, the former refers to medical diagnostics ( appreciative ) and State laws ( normative ), while the latter refers to scientific observations ( descriptive ) such as those of physics ( 105 ). The speed of light and the gravitational constant are given ( fact ), while policies and diagnostics can change, and even less stable are the beliefs ( opinion ). These levels of knowledge , its strength, and even possible progression are not really messy but require an ongoing process of communication, management, questioning, and transparency to avoid fallacies ( 114 ). However, normative knowledge is a broad area. The decision leads to such knowledge: norms are about the Act, Vote , or any techniques archiving someone decision, which systematized action. For example, legal laws are normative as well as government, industry, and academic programs operating in the technology and, more broadly, into the social . Decisions—and the following actions—must always be studied, evaluated, and reframed collectively to progress these norms 7 . Progress is driven by examining the criteria and quality of its justifications (validity, credibility, integrity, etc.): the value of ideas and advances. These values become shared appreciative knowledge under community-based ethical analysis, which integrates academic, political, and civil perspectives as Global evaluative insights ( 16 ). The justified decision is about “responsible conduct” and “social responsibility” at the actor and network level, and should not be based on a decontextualized singular interest or ideology ( 5 , 115 ). Democratizing governance processes through education and promotion refers to pragmatism or “collaborative governance,” and operates through communication, open dialogues, and constructive criticism on the justificatory and uncertainty value of programs ( 72 ), but implementing large-scale evaluative, deliberative, and reflexive practices remains, indeed, a challenge. Avenues for action have been highlighted here, including the organizational dynamics emerging from an Agreement hosted by a collaborative governance body and evaluated by a Living lab.

Good decisions and norms, which means being shaped by ethics, require more than being fact-driven or value-driven —they need both. This requires deepening the thinking process to “transcend” all levels of knowledge ( 105 ), that is, to bridge the descriptive and appreciative knowledge , as the Québec Agri-Food AI Ateliers has been a successful example ( 46 ). “Transdisciplinarity” implies going beyond statistical, mathematical, or predictive data-driven reasoning to interpret data and models ethically, as appears to be a priori monitoring of antibiotic use and a posteriori the translation of surveillance insights into antimicrobial governance policies. Classical scientific methods (positivism) are valid when framed by models or conducted within controlled environments, but fail in the real world, notably the ecological ( in situ ) surveillance of antimicrobial resistance ( 111 ). This issue opens room for reflexivity and deliberation in research (as action-research ), but also more broadly in society (as action-ethics ), requiring educational tools to operate: the example of the antimicrobial footprint ( 112 , 116 ), which integrates learnings and competencies from history and art (see Saxe's poem, above). Hard decisions about human life, environmental crises, and next-generation implications need to be “based on ethical values, which are in the long run inseparable from scientific facts” (paraphrasing Potter's maxim). This intellectual agility requires transparency to challenge justifications prior to undesirable events. Seeking transparency must be a constant and proactive quest, becoming even the core (functioning) aspect of collective ethics leading to the emergence of empowerment practice. Although conceiving how to manage and acknowledging what such transparency might be complicated to assess, deliberation points to possible paths for action.

Points of Observation

One of the main aspects to be considered goes beyond knowledge and existence and enters the area of actions. This perspective, or point locating the observer in action in the world, refers to a “bridge to the future” ( 5 ) and is about “human responsibility” ( 117 ). The positioning, as the inspector, researcher, decision-maker, or even public health policy perspective, is in constant dialectic with (influencing it and biased by) its contextualizing system ( 73 ). Indeed, “Ethical values [the positioning] cannot be separated from biological facts” ( 6 ), meaning the surrounding ecology and economy of antimicrobial resistance to the inner psychology of behaviors and will of antibiotic users and decision-makers. Ethical values are an articulation of the (free) will to change. A will for change must emerge from the case ( in situ ) through convergence with applied sciences and practices, as initiated in One Health and sustainable development. Theories remain crucial to understanding what is observed, e.g., through the anthropological (belief, family, history), the sociological (institutional power and knowledge dynamics), and the biological (e.g., organisms and organizations).

How can we manage to Think globally while acting locally , as individuals within the (social) collective, (biotic) community, even (planetary) ecosystems? How do we evaluate locally (for us) while deciding globally (for all)? How do we do planning (long-term) while implementing (short-term)? How do we regulate (decide) while questioning the norms, guidelines, and understanding that have been established? ( 6 ) These questions find some solutions under the theoretical frameworks of “thinking in systems” ( 73 ) and mathematical scales ( 118 ) as “coadaptive management” and “adaptive governance” processes ( 77 ) and under more applied frameworks such as in “transition management” ( 74 ) about governance bodies and socio-ecological systems.

Deliberation is linked to the growing interest to find ways to integrate experts, traditional, citizens or, even alternative knowledge ( 71 , 113 ). However, this should not reduce the value of scientific knowledge, but rather enrich it; these different types of knowledge (expert and non-expert) have different functions in the construction of human narratives. While expert knowledge seeks disciplines (laws, principles, mechanisms, and measures), other forms of knowledge express values, cultures, and beliefs. The latter communicates the realities of humans, beings, and things in various ways. Acknowledging the pluralism of values, as the appreciative knowledge of a collective, is a driving force (the free-will-power) for empowerment. These values can justify action before crises, i.e., to set in action the whole “scene” ( Figure 2 ) to build the resilience of the system. In short, the will of a government or single decision-maker is insufficient to encapsulate the will of all ( 14 ): we need ethics (codes, methods, and prospectives) to empower each one to collective changes with a roadmap and a compass in order to navigate between different wills and aim at the common project ( 119 ). However, as an opening, this code must progress and go through an iterative phase of questioning ( Figure 1 ).

This paper seeks to lay the foundations for a methodological framework in empirical bioethics. Instead of focusing on ethical theories in philosophy or sciences, we reviewed the methodological literature in empirical bioethics, One Health and Sustainable Development study to lay foundations in pragmatism (J Dewey)—( descriptive ) pathways to operate instead of ( appreciative ) guidelines to dictate ( normative knowledge ). The ultimate goal was to support the actual will in those fields of study to build reflexive governance, notably in One Health, to address the issues concerning the pharmaceutical agents necessary for medical practice (the antibiotic cure), but modifying the environmental conditions (the problem of antibiotic resistance).

To bridge the gap between person-to-person dialogues and social negotiation processes, the operational pathway goes through comanagement techniques and must target cooperation nodes. Notably, the manager must bridge the gap between the construction of the Social (its ethical narrative) and collective practices, which leads to empowerment ethics. This operation translates the adaptive governance cycle into a new ethical technique of “R&D”: Project management in Research & Development , the one that confines them into two parts, must shift to a more integrative practice, called here the adaptive Reflective-Evaluative-Deliberative cycle. These communications and knowledge systems open to a perspective bridging the biological, social, and intellectual Latourian's collective and biotic community concepts to responsibilize the former over the latter.

As shown in the case study on an antibiotic use surveillance program in animal health, being prepared means being empowered and responsible, which facilitates stakeholder engagement and even promotes collaborative nodes to accelerate changes. Preparation means joining the community-based action - ethics methodology to R&D practice from the start: at the time of policy (see: GPHP), program [see: ( 46 )], and project (see: FMVUM team) ideation. Acknowledging ethics shows ways to share responsibilities among stakeholders to empower each in their respective competence for action. Empowerment ethics deepen the meaning of responsibility. Being responsible is more than accountability, it is linked to duty, proactive transparency, and scientificness as credibility and validity. Empowerment implies finding ways of acknowledging the respective position of stakeholders, notably roles, interests, missions, observations, and values, to respectfully manage multi-actor systems and share responsibility toward successful and ethical changes.

The ethical conflicts between the cognitive and the collective—as the singular will and common good—can only be managed through an open dialogue that continuously seeks ever better solutions, as more accuracy and consensuality. Thus, instead of questioning how to access data as a justified end 8 to solve the antibiotic resistance problem or other One Health problems, we should look to empower the community to manage their data (a fairness Open data approach per community). The question we should be asking, then, is: How should we manage an Open dialogue between data producers and users within the community to start local changes? With empowerment ethics focusing on transparency, translation, negotiation, and arbitration, what we should call reflexive governance , we can engage groups and collectively drive cultural change and the willingness to accelerate it (an Openness to data ), and then connect communities (human, animal, and ecosystem health) to reach the broader perspective of One Health and the Sustainable development of its programs, even its paradigm.

Data Availability Statement

Author contributions.

AB was responsible for the conception and ideas presented in this article, contributed to the planning, and conduct of the qualitative survey described in the article as a case study. CA and BW-J reviewed the initial manuscript, contributed to the text through changes to structure and addition of new content, and approved the final manuscript. All authors contributed to the article and approved the submitted version.

This article was supported by funding (Ph.D. scholarships) from the Institut de Valorisation des DOnnées (IVADO), the Global One Health Network (G1HN), Centre de Recherche en Santé Public (CReSP) and the International Observatory on the Societal Impacts of AI and Digital Technologies (OBVIA). The corresponding author was an employee of the Faculté de Médecine Vétériaire at the Université de Montréal, hired to accompany the feasibility study on the implementation of a monitoring system for antibiotic use in veterinary medicine in Quebec by the Center for Expertise and Clinical Research in Animal Health and Welfare (CERCL) mandated by the Ministère de l'Agriculture, des Pêcheries et de l'Alimentation du Québec (MAPAQ).

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's Note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Acknowledgments

The authors recognize the important contributions of the team leading the feasibility study of monitoring antibiotic use, and all those who participated in this collective brainstorming process, especially Ferrouillet, Laroche, and DesCôteaux, in organizing the deliberations, and the Government of Québec Ministère de l'Agriculture, des Pêcheries et de l'Alimentation (MAPAQ). Affiliated with Groupe de Recherche en Épidémiologie des Zoonoses et Santé Publique (GREZOSP), Centre de Recherche en Santé Publique (CReSP) and Observatoire Internationale sur les Impacts Sociétaux de l'IA et du Numérique (OBVIA), the author was able to benefit from rich discussions with members of these communities who contributed to the reflections presented here.

1 Abduction and inquiry (a “top-down / bottom-up” approach) are key processes from pragmatism (C. S. Peirce 1839–1914 and J. Dewey 1859–1952) to bridge behaviors, norms, and beliefs, but requires ethics to function properly ( 8 ).

2 For instance, the Stratégie québécoise de santé et de bien-être des animaux proposed an antimicrobial governance plan for all veterinary practices, the Comité consultatif sur l'utilisation judicieuse des médicaments for the pork industry and the professional Order as well as academic institution as initiated their own reflection. Each act on different domains (veterinary sectors), scales (professional advice up to national policies), and levels (from descriptive data to prescriptive commend or evaluative thinking).

3 Depending on his·er background, the bioethicist can also reinforce networking, designing, applying, and synthesizing. As illustrated by the idea of “living labs” put forward by the International OBVIA, a living lab applied to bioethics can help manage power relationships, mainly those driven by interests and values ( 45 ), from an understanding of responsible conduct procedures and ethics in academic and governmental researches.

4 See the Agri-Food AI Ateliers initiative ( 46 ) or Montréal Declaration for a Responsible Development of Artificial Intelligence deliverative processes ( 47 ).

5 Note an ever-increasing recruitment process, involving 100 actors in 2020, to seek saturation of the perspectives, and continue the incentive process (the “interessement” according to the Latourian perspective).

6 “Final positioning” does not exist within a collaborative governance depicted as an adaptive cycle (Step n). (Pro/post)position refers to the adaptative cycle in management ( 77 ) which must become a “constructive” and not a “disruptive” process.

7 Economics, literally the rules of the house (“Okios nomos”), should join the projects in sustainable development with this general sense.

8 For example, are the FAIR Guiding Principles a means or an end? ( 120 ). As a means, they respond to the criticisms leveled at the Open Data movement , when perceived as seeking “open bars.” We need the complement of a FAIRness ethic to frame responsible data sharing.

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Theory and Bioethics

The relation between bioethics and moral theory is a complicated one. To start, we have philosophers as major contributors to the field of bioethics, and to many philosophers, their discipline is almost by definition a theoretical one. So when asked to consider the role of moral theorizing in bioethics, a natural position of such philosophers is that moral theory has a crucial, if not indispensable, role. At the same time, there are those who call into question the “applied ethics” model of bioethics. Roughly, on this model, one moral theory or other (e.g., utilitarianism, Kantian deontology, virtue theory) is imposed upon the applied ethics problem at hand, in the hopes of producing a resolution. Such a model, according to its detractors, overplays the separation of the theoretical from the applied. Still further, there are those such as Will Kymlicka (1993 [1996]) who hold that moral theory should not have a place in the making of public policy on bioethical issues. [ 1 ]

This entry starts by addressing the complexities surrounding the very notions of bioethics and moral theory. From there, we explore the question of what doing applied ethics amounts to. Moving on, the discussion centers upon the main methodological movements in bioethics’ relatively short history: its appeal to high moral theory, the emergence of mid-level approaches to bioethics, and approaches to bioethics that attribute a lesser role to theoretical tools, or no role at all. Feminist approaches to bioethics are treated next, followed by a look at the significance of moral theory to clinical bioethics.

1.1 Varying Accounts of Moral Theory

1.2 the pursuits of bioethics, 2.1 problems with the “applied model” of applied ethics, 2.2 applied ethics and disagreement on theory, 2.3 applied ethics and rule application, 2.4 toulmin on the tyranny of principles, 3.1 the attractions of high theory, 3.2 problems with bioethics conceived as an appeal to high moral theory, 4.1 a move away from deduction, and reflective equilibrium, 4.2 the common morality, 4.3 criticisms of the principles-centered approach, 5.1.1 advantages of casuistry, 5.1.2 criticisms of casuistry, 5.2.1 criticisms of narrative ethics, 6. feminist theory and bioethics, 7.1 models of clinical ethics consultation, 7.2 clinical ethics and moral theory, 8. conclusion, other internet resources, related entries, 1. what is moral theory what is bioethics.

The question of the relation between moral theory and bioethics is made difficult by a number of factors, not the least of which is the absence of any one account of what constitutes philosophical theory. There are, of course, the standard moral theories of introduction to moral philosophy—consequentialism, deontology, and virtue ethics. And we also speak of mid-level theories, such as moral principlism and casuistry, though the extent to which such approaches are strictly speaking theoretical is somewhat unsettled. What do we mean by moral theory? What characterizes an approach to moral philosophy and bioethics as theoretical? Add to such questions the fact that bioethics itself is not a monolithic discipline, and our topic is complicated right from the start.

On some accounts, a theoretical approach to a philosophical issue or problem is defined by intellectual tendencies toward some combination of generalization, universality, systemization, abstraction, explicitness, and the capability to generate recommendations. For instance, Martha Nussbaum holds that there are certain necessary and sufficient criteria for ethical theory (Nussbaum 2000: 234–236). On her view, ethical theory:

• Gives recommendations about practical problems;
• Shows how to test correctness of beliefs, rules, and principles;
• Systematizes and extends beliefs;
• Has some degree of abstractness and generality;
• Is universalizable;
• Is explicit.

Generalization, universality, and abstraction are also taken by others to be hallmarks of moral theory (Arras 1997: 74; 2003; Louden 1990). Even so, some philosophical approaches to moral and bioethical questions that do not satisfy all or even any of the criteria set out above are referred to as theories. For instance, moral particularism, which aspires neither to the formulation of generalizations nor to systemization [ 2 ] is sometimes referred to as a moral theory. [ 3 ] Further still, one might even hold that beyond the criteria listed above, moral theory employs a certain argumentative mode, with a certain tone and style (Louden 1992: 156; Nussbaum 2000: 239).

There is more one could say here on agreement and disagreement on what counts as theoretical within philosophy, including something about what might qualify as an anti-theoretical approach to morality and bioethics (Clarke 1987; Clarke & Simpson 1989; Fotion 2014; Louden 1990). But our main point for the moment is that what counts as moral theory is not perfectly clear, which complicates the question of the relation between moral theory and bioethics. We need not here stipulate one definition of what we shall count as a theoretical approach to bioethical problems moving forward. Suffice it to say that the question of the relation between theory and bioethics will be approached by canvassing various methodological approaches to treating problems and questions in bioethics.

Turning now to what counts as bioethics, the label does not indicate a unitary pursuit, what with bioethics’ academic, policy-oriented, and clinical instantiations (McMillan 2018: 11–16; Battin 2013: 2). When it comes to bioethics as an academic or scholarly pursuit, the practical constraints of clinical decision making, and the timelines imposed by commissions, are non-existent, freeing the bioethicist of the need to reach closure on a decision or to resolve a complex issue. As it has been put, for the academic bioethicist and her students, it does not matter if you end the seminar more confused than when you started it. It is within this academic domain that the relationship between bioethics and moral theory will be most explicit, the role of moral theory most intently debated, and moral theory probably most welcome.

Looking at policy-oriented bioethics, here the bioethicist assists in the development of policies affecting large numbers of people on issues of bioethical relevance (such as the rationing of kidney dialysis services, or the availability of medical assistance in dying). There are challenges upfront with the bioethicist’s invoking moral theory of any sort in tackling policy challenges as a member of a national commission, say, or as a member of her regional health authority’s ethics committee, or as a member of any other sort of policy-oriented working group. For starters, there is the fact that she is likely to be in the vast minority as a group member with philosophical training. But that aside, there is the further challenge of the unlikelihood of agreement amongst working group members on which moral theory should rule the day or govern the decision at stake. [ 4 ] There is the third category of clinical ethics, a pursuit taking place as health care is practiced on the ground. As we will see in more detail shortly, the relevance of moral theory to clinical ethics turns heavily on the operative conception of clinical ethics. In particular, it relies upon our conception of the goals of the clinical ethics consultation (the main activity of clinical bioethics), and upon our conception of the role of the clinical ethics consultant.

What constitutes what we call applied ethics is just as fraught a question as the one of the relationship between theory and bioethics, and it implicates our take on that relationship. We now turn to that question.

2. What is the Nature of Applied Ethics?

We have briefly reviewed the variety of tasks and problems to which bioethics addresses itself. But we should also briefly examine the ways in which bioethics, and its broader cousin applied ethics, is and has been conceptualized. Such an examination is important within the context of this entry in that questions about the nature of applied ethics are often implicitly questions about the relation between the theoretical and the applied, or between “theory” and “practice”. The very term applied ethics suggests that the discipline involves an application of some sort or other moral theory to the practical problem or question at hand. Arthur Caplan writes that many contributors to the field of bioethics take applied ethics to involve the application of existing theories and principles to moral problem in medicine (Caplan 1980: 25–26). But what does it mean to apply an existing theory to a practical problem? How easily can the distinction between applied ethics and ethical theory be sustained? As it turns out, many say that the field of applied ethics cannot be what the name would lead us to suppose it is.

Caplan argues that there are problems with such a model of applied ethics (which many call “the applied model”). To start, many moral problems arise within medicine for which moral theories have no answers. The applied model of applied ethics also presumes that those involved in the analysis and solution of a moral problem take it that the nature and description of the problem or quandary is not in dispute, where in reality it is often not clear exactly what is the moral issue at stake (Caplan 1980: 28; 1989; Agich 2001; and Magelssen, Pedersen, & Førde 2016). This model also implicitly involves a naïve suggestion, argues Caplan, namely that by dint of expertise in moral theory, the well-trained philosopher can almost immediately solve moral dilemmas in the intensive care unit or the emergency department (Caplan 1980: 27). Moreover, adherence to such a model of applied ethics forecloses the opportunity for medical ethics (or other fields of applied ethics) to inform theory construction, as the direction of influence on that model moves only from theory to the practical.

Further disruption of the application model came shortly afterwards from both Tom Beauchamp and Alasdair MacIntyre. [ 5 ] Beauchamp challenges the application model of applied ethics, defined largely as above: ethical theory develops general and fundamental principles, virtues, rules, and the like, and applied ethics treats particular contexts through less general, derived principles, virtues, and so on. In a 1984 issue of The Monist dedicated to “Ethics and the Modern World”, Beauchamp and MacIntyre each probe the relation between moral theory and applied ethics. Beauchamp argues for the elimination of the distinction between the two, citing the lack of significant difference between them in terms of philosophical activity or method. Philosophers doing applied ethics do what philosophers have always done, says Beauchamp—they analyze concepts, for instance, and submit to critical scrutiny various strategies that are used to justify beliefs, policies, and actions. The application model also problematically presumes a unilateral direction to the flow of ethical knowledge, from moral theory to practical cases and problems. But in fact, says Beauchamp, moral theory has much to learn from practical contexts (Beauchamp 1984).

MacIntyre tells us that applied ethics cannot be the sort of activity it is commonly supposed to be. He turns our attention to the complexities surrounding the notion of what it would mean to apply a moral rule. If applied ethics is in fact an application to cases of the rules of morality, we should expect to find that disagreements over moral rules reproduce themselves within debates on matters of practical ethics. But in a high proportion of cases these theoretical disagreements, of which there are plenty, are not in fact replicated. Large disagreement on what are the rules of morality turn out to be compatible with large agreement within the domain of applied ethics. Noting how common such situations are (situations in which clear disagreement exists on what are the rules of morality, while fairly easy agreement can be reached on concrete moral issues), MacIntyre holds that it cannot be the case that we first and independently comprehend the rules of morality and then secondly enquire as to their application under particular circumstances.

As MacIntyre has it, no rule exists apart from its application (and he admits that his argument entails the rejection of any conception of moral principles or rules as timeless and ahistorical). Often times, he suggests, it appears as though agreements among a group of decision makers is being reached through rational argumentation, but in fact often group members are reopening debates about perennial philosophical questions. This is particularly so in medical ethics, MacIntyre tells us. Our common conception of applied ethics does indeed rest on a mistake (MacIntyre 1984).

Stephen Toulmin, in his well-known paper “The Tyranny of Principles”, recounts his experience on the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (Toulmin 1981). Agreement amongst members of the commission was relatively easy to reach even on difficult cases, even in the face of thoroughgoing moral theoretical disagreement amongst members. His main point in the paper is not to directly address the nature of applied ethics, but to argue for a regaining of what he calls the “ethics of discretion”, calling into question the role of moral principles. En route, though, he undermines the application model of applied ethics, through his discussion of how much agreement on practical problems there can be among theorists of radically different stripes. According to Toulmin, this shows us that applied ethics is not a matter of applying a theory to a problem, in that there can be agreement on how to resolve a practical issue amongst those who strongly disagree on which moral theory ought to prevail. Again, we have an emphasis upon a lack of reproduction of theoretical disagreement in dealing with issues in practical ethics. One might question whether such agreement on particular cases paired with theoretical disagreement shows that the applied model ought to be abandoned. Nevertheless, Toulmin’s experience prompted him to wonder what final appeals to principles really achieved.

One final point for the moment on the disruption of the distinction between ethical theory and applied ethics: as will be discussed in more detail in section 4 , many would say there recently has been widespread adoption of reflective equilibrium as the method of justification in bioethics (Arras 2007). One important implication of this adoption is a blurring of the distinction between moral theory and applied ethics, what with the fact that on reflective equilibrium, our responses to real cases inform our theorizing as much as our theories inform our handling of cases.

We have just seen reasons to think that we cannot neatly separate moral theory and applied ethics. Even so, moral theory in some form plays a crucial if not indispensable role in bioethics. We will now look at the relevance of high theory.

3. Bioethics and High Moral Theory

As the discipline we now call bioethics emerged in the early 1970s, moral philosophers and political theorists were primed to contribute to debates on any number of practical issues in areas such as law, economics, the environment, business, research on human beings, and medical practice. These academics were understandably hopeful both that their knowledge of moral theory would prepare them to apply their theoretical understanding to real-world problems, and that their skills in critical analysis would be appreciated. Even today, such confidence in the usefulness of moral theory to the solving of practical problems is manifest in the introductions to bioethics textbooks, many of which include discussions of at least the basics of consequentialism, virtue theory, deontology, and so on.

The attractions of high theory were, and are, significant, and indeed, such moral theories have provided the groundwork for many an approach to bioethical issues. Examples here include Alan Donagan’s Kantian-inspired work on informed consent (Donagan 1977), Tristram Engelhardt’s libertarian critique of redistribution in health care (Engelhardt 1986 [1996]), and Joseph Fletcher’s utilitarian approach to a broad range of issues in bioethics (Fletcher 1974).

What might explain such recourse to high moral theory? What are the attractions of high moral theory for the bioethicist? Let us consider three important possibilities. First, in bioethics as in everyday life, our routine moral coping skills work often enough. When they do not, though, we need recourse to more structured and systematic moral guidance. On these occasions, high moral theory, such as consequentialism and deontology, looks helpful and attractive. Besides offering guidance, such theory provides the resources for moral justification, especially helpful when we are pressed to explain our bioethical or everyday moral decisions. Second, when we appeal to mid-level principles (such as the principle of justice or the principle of beneficence), we sometimes need help in weighing, balancing, and adjudicating between those principles. High moral theory could well provide such help, by providing a form of moral standard. Recall Sidgwick’s argument in support of utilitarianism, that it could provide guidance in resolving conflicts among ordinary duties that everyday (non-theoretical) moral thinking cannot resolve on its own (Sidgwick 1874). In a similar vein, Martha Nussbaum defends the need for moral theory in part by emphasizing what she takes to be its power in helping us weigh various rules against each other in varying circumstances through its setting of a normative standard (Nussbaum 2000). Third, high moral theory can help us achieve consistency in our moral lives, as well as a systematic perspective. There is benefit, the thought goes, to bringing moral theory to bear upon various facets of our ordinary and bioethical lives, because of the systematicity and coherence it can provide. Bernard Gert is one for whom such systematization, at least within bioethics, takes priority (Gert, Culver, & Clauser 2006).

The days of bioethics conceived of as high theory were short lived, however, and the reasons plentiful. For starters, there is the question of which moral theory should prevail. Even if one has no problem choosing a moral theory in the first place, one is bound to have difficulty in successfully defending that choice of theory against its alternatives (Magelssen, Pedersen, & Førde 2016: 27). The intractability of the debates between utilitarians and deontologists, say, should give anyone pause when staking out her positions on bioethical matters with the guidance of her preferred moral theory. This is one thing for the academic bioethicist. But it is quite another for the clinical ethicist (for instance) to attempt to settle the moral matter at hand through recourse to (say) Kant’s categorical imperative. Not only is she likely to be surrounded by non-philosophers (where recourse to the intricacies of such high flying moral theory is liable to fall flat), but we must ask why the public to whom she might be accountable should be subject to her preference for Kantianism. The same would hold true for the bioethicist working in the public policy arena.

Second, that challenge aside, there are disagreements within the ranks of any given theory. Consider rule versus act utilitarianism, for instance, or disagreement amongst Rawlsians. Third, some cite tensions between some versions of high theory and democracy. Publicity, many hold, ought to be a fundamental norm governing policy making in a democratic society (Rawls 1971). Requiring such publicity would preclude justifications that no one outside an elite class of philosophers can understand. One need not be a theory sceptic, then, in order to demote the place of high theory within bioethics; one need only recognize the tension between doing bioethics in a democracy, and rarefied moral theory (Bertram 1997; London 2001).

Fourth, and this is focused on the usefulness or lack thereof of high moral theory within the clinical ethics context, using theories in the prescribed way may be very demanding for the clinical ethicist without high level philosophical training. Furthermore, the comprehensiveness of the justifications promised by high moral theory may be unnecessary within that context (Magelssen,, Pedersen, & Førde 2016: 27). Fifth, and reminiscent of Caplan’s problems with the applied model of applied ethics earlier discussed, it is doubtful that any high-level philosophical theory can generate straightforward answers to complicated applied problems. Norman Daniels, whose work on justice and access to health care was inspired by Rawls’ theory of justice, came to admit that philosophical theory is insufficiently fine-grained for actual policy making, and that it needs to be complemented by justly structured political deliberation (Daniels 1996: 144–175; 2007: ch. 4). The general thought here is that high philosophical theory is ill-equipped to deal with practical decision making on the concrete level (Gutmann & Thompson 1998). After all, one’s preferred moral theory could well, for instance, endorse several possible policy options, leaving decision makers wanting for further guidance.

In sum, bioethics as conceived of as an appeal to high moral theory has been found to have significant limitations, despite its initial promise. We now to what appears to be a more promising approach.

4. The Move to Mid-Level Theorizing: a Principles-Centered Approach

The move to what is often referred to as mid-level theorizing was (partly) a result of the challenges with high theory just discussed, and manifested most prominently by the 1979 publication of Tom Beauchamp and James Childress’ influential Principles of Biomedical Ethics (PBE). The approach set out in that book, and its revised versions appearing in the book’s subsequent editions, feature mid-level moral norms, which take the form of four moral principles. [ 6 ] Beauchamp and Childress’ four principles are:

• the principle of autonomy (the value of self-direction regarding one’s life and choices),
• the principle of beneficence (the value of enhancing the welfare of others),
• the principle of nonmaleficence (the value of avoiding imposing harm on others), and
• the principle of justice (the value of according each person her due) (Beauchamp & Childress 2019a; Arras 2017: 5).

Coming on the heels of Joseph Fletcher and Paul Ramsey’s early work in what we now call bioethics—both Fletcher and Ramsey were moral theologians, whose work, while very different from one another’s, was based on Christian moral theology—Beauchamp and Childress offered the promise of a moral framework that could appeal to a pluralist and secular society. [ 7 ] Beauchamp and Childress have different theoretical starting points, with Beauchamp describing himself as a rule-utilitarian, and Childress a Christian deontologist (Arras 2017: 3; Beauchamp & Childress 1979: 40: 2019b: 9). This underlines the approach as one that refrains from promoting a single theory over all others, and as one that requires no underlying theoretical or metaphysical commitments for its uptake.

Beauchamp and Childress’ approach has evolved since the book’s first edition, and one important aspect of this evolution is the move away from deductive reasoning, or (in other words) away from a “top down” application of principles to cases. Their initial take on the relation between moral theory, principles and cases was that

theory justified principles, that principles justified moral rules, and that rules justified moral judgments in particular cases. (Arras 2017: 11)

This, at least, was the impression given by a diagram appearing in the first edition of the book (Beauchamp & Childress 1979: 5), which many took to endorse such a top down model. The approach was met with resistance, with those in favor of case-based reasoning (also known as casuistry) objecting to what at least appeared to be a unidirectional movement from principles to cases. Intuitive, case-based judgments seemed to be left out of the picture, and the possibility of a dialectical relationship between principles and our responses to cases ignored. In fact, and as a result of an evolution of their approach, Beauchamp and Childress now fully ascribe to this position on the reciprocal relationship between our responses to cases and moral principles. This is evidenced by their current commitment to reflective equilibrium as the methodology of bioethics. Briefly, reflective equilibrium is a process by which our considered responses to actual cases influence our moral principles, and those improved-upon principles then provide enhanced guidance for our response to further cases. This is a way of doing moral philosophy originally formulated by Rawls (Rawls 1971: 48–51; Daniels 1979; Arras 2007: 47). Cases and principles work in tandem, then, as opposed to moral principles being applied deductively to cases. A distinction is made between narrow and wide reflective equilibrium. Narrow reflective equilibrium involves interplay between our responses (or intuitions) about cases and the moral principles used to structure such intuitions, as explained above, where wide reflective equilibrium brings in additional moral and social theories. Beauchamp and Childress endorse wide reflective equilibrium (Arras 2017: 182).

That Beauchamp and Childress take (wide) reflective equilibrium to be such a crucial component of their approach is an important aspect of their approach as it currently stands. As their view has evolved over subsequent editions of PBE, reflective equilibrium has grown to have a more and more prominent role. An important result of this embrace of reflective equilibrium is that, paired with Beauchamp and Childress’ appeal to the common morality, we have a hybrid approach to justification, hybrid in the sense of embracing both coherentism and foundationalism. Reflective equilibrium is the source of coherentism, with the appeal to the common morality meant to provide a foundation. Before moving on to a closer look at the notion of the common morality, we should note that this hybrid approach differs from accounts of reflective equilibrium we might find in political theory, for example, and in other areas of practical ethics. Those more standard accounts involve achieving moral justification by bringing the various elements of our moral reflection into contact with one another, with none of these elements regarded as foundational and all of them regarded as open to revision. By contrast, Beauchamp and Childress accord foundational status to the common morality, and it is the common morality that underwrites their four principles.

Since the third edition of PBE, the source of the four principles has been not high theory but the common morality. For Beauchamp and Childress, the common morality is what they take to be a universal morality, one to which all morally serious persons are committed (Beauchamp & Childress 2019b). The content of the common morality is dictated by the primary objectives of morality, which include, for example, the amelioration of human misery. It encompasses certain rules of obligation (tell the truth, keep promises), and endorses certain standards of moral character, such as honesty and integrity (Arras 2017: 21–3).

Importantly, this common morality is historicist, in that its authority is established historically, through the success of its related norms in advancing human flourishing across time and place. However, unlike many historicist accounts, the common morality is not relativist, as its norms are to be applied universally. Beauchamp and Childress accord the common morality a special place within their approach, a place shielded from the jostling involved in the quest for coherence through wide reflective equilibrium. The common morality is thus the foundationalist aspect of their account. Moral conclusions, then, are justified through both coherence (via the method of reflective equilibrium), and through foundationalism, being connected to the principles of the common morality (Arras 2017: 23; Beauchamp & Childress 2019b: 11).

There is a pluralistic element to Beauchamp and Childress’ approach, which is manifested, in part, by the fact that the approach avoids a single overarching principle in favor of the short list of four moral principles. This has lead some to criticize Beauchamp and Childress’ approach for an alleged lack of systematicity—a fatal flaw, according to some, in any philosophical theory (Gert, Culver, & Clauser 2006). Such critics claim that without a clear prioritizing of principles, Beauchamp and Childress’ principles-centered approach lacks rigor and leaves too much room for intuitive judgments in cases where principles conflict. Beauchamp and Childress respond, first, by rejecting the very idea that they are offering a philosophical theory, rather than a framework or practical guide. But perhaps more importantly, they doubt that any priority ranking of their principles would stand the test of time (Arras 2017: 6–9).

A fairly recent criticism comes from John McMillan, according to whom Beauchamp and Childress’ approach stifles careful reflection about real issues. McMillan claims that principle-centered methods cannot lead to the formulation of what he calls “reasoned convictions about moral problems”, and writes that the four principles approach hinders bringing moral reason to bear upon practical questions. This is because, as McMillan has it, newcomers to bioethics will subsume whatever issues are under consideration under one of the four principles, and then rule that the principle of autonomy should trump the other three principles. While recognizing that such a method is not what Beauchamp and Childress intended, McMillan writes that it is in fact the way the four principles approach is typically employed (McMillan 2018: 51–53).

Two interesting criticisms of Beauchamp and Childress’ latest moves come from the late John Arras. Arras questions the plausibility of Beauchamp and Childress’ hybrid account, specifically the account’s reliance upon the common morality as a foundation. Arras asks why Beauchamp and Childress distinguish the norms of the common morality from (what John Rawls called) our considered moral judgments, which are themselves revisable. Arras recognizes that Beauchamp and Childress might motivate their appeal to a foundation on the ground that coherence alone cannot secure moral truth. In that case, though, Arras wonders how much additional justificatory advantage is leveraged by appealing to the foundational common morality, as reflective equilibrium itself is maximally inclusive of all pieces of the moral picture (including, presumably, the common morality’s norms). The problem, as Arras has it, is the conception of the common morality as being in its own moral sphere, removed from reflective equilibrium’s dialectic. Arras is skeptical that the common morality is in fact untouched by the vicissitudes of time and the dialectics of reflective equilibrium (Arras 2017: 24–26).

A second criticism from Arras deals with Beauchamp and Childress’ embrace of wide reflective equilibrium. According to Arras, it is difficult to comprehend how moral principles can retain their priority in conceptual analysis in the face of this endorsement of wide reflective equilibrium (Arras 2017: 182–3). Arras asks us to recall that within wide reflective equilibrium, no single cluster of moral considerations (e.g., considered case judgments, background theories, moral principles) is privileged. What matters in reflective equilibrium’s revising process, in fact, is our level of commitment to those considerations, rather than the form of the commitments themselves (Scanlon 1992; DePaul 1993: 57). Thus, our beliefs about principles, just like our beliefs in background theories and considered case judgments, are always subject to revision. The principles-centered approach seems to have sacrificed its methodological distinctiveness, so Arras’ criticism goes, given how principles appear to have been robbed of their conceptual priority.

Finally, Beauchamp and Childress themselves recently acknowledge two misunderstandings of their four principles framework. The first misunderstanding is that the framework represents American individualism, with the principle of autonomy taking priority. Their response is, first, to contest any connection between American individualism and a respect for autonomy. Further, they emphasize that their framework’s principles are all only prima facie binding. The second misunderstanding is that the framework downplays the virtues. It has been argued that medical ethics should be underwritten by virtue-based ethics rather than by principle-based ethics, and that that approach has a better chance of restoring humanity to health care (de Zulueta 2015). Here, Beauchamp and Childress point to various discussions of virtue theory and moral character appearing in various editions of PBE, including a discussion in the eighth edition of how virtues and principles might work together in certain practical scenarios (Beauchamp & Childress 2019b: 11).

5. Other Methods of Bioethics

5.1 casuistry.

There are other approaches to bioethics that embody alternatives to high theory. The first, casuistry, can in some sense be understood as a critical response to early versions of Beauchamp and Childress’ four principles approach. Recall a certain response to at least early versions of Beauchamp and Childress’ approach, namely that that approach was too abstract and that its alleged deductivism was objectionable. Advocates of casuistry, or case-based reasoning, objected to what they at least took to be the unidirectional “downward” movement from principles to cases (Arras 2017: 11). Instead, they argued for a more “bottom up” approach, which would see actual cases, rather than any one moral theory, as the starting point, and would conceive of moral principles as in fact emerging from our consideration of cases.

We often speak of casuistry full-stop, and when we do we generally have in mind an approach to ethics that emphasizes analogical reasoning with concrete actual cases (the one before us, and relevantly similar past cases). When one encounters a case, one harkens back to a relevantly similar case from the past, recalls how one responded in that case, and “applies” that reasoning to the case before one. We should, however, recognize the distinction between two versions of the approach. To start, there is casuistry understood simply as the practice of addressing particular cases, treating them through the application of (abstract) principles. Understood as such, casuistry would seem to be rightly viewed as a logical complement to approaches to bioethics that take moral principles to be morally binding (Arras 2017: 46). Casuists here hold that principles can have an action-guiding or normative force that is not reducible to our responses to cases, and that the moral knowledge represented by such principles is not reducible to responses to cases (Jonsen 1995). Note that when defined in this way, differences between this moderate version of casuistry and a more traditional top-down application of moral principles to cases might be difficult to pinpoint.

A more radical interpretation of casuistry, though, has a different story to tell about the derivation of moral principles. Where on the moderate version we approach cases with our moral principles already established, on this more radical version, principles develop through our analysis of actual cases (Arras 2017: 47). So the two different versions adopt different pictures of the source of our moral knowledge. On the radical version, it is at the level of the concrete case, rather than at the level of theory, where we find the greatest confidence in our moral judgments. The claim here is that moral principles are, at base, merely formalizations of our intuitive responses to cases, without independent normative force (Toulmin 1981).

According to its proponents, casuistry as an approach to bioethics has specific advantages. One is its potential to offer chances of reaching agreement amongst those of different theoretical commitments, rendering it particularly well-suited for decision making in a pluralistic society (Sunstein 1996). Turning to the more applied medical context, casuistry is well-suited to use by health care workers, whose orientation is already case-focused, and whose time for and interest in moral theory is likely quite limited. When it comes to teaching bioethics, casuistry would call for the use of richly detailed case studies, which many whose teaching responsibilities include teaching those in health care would count as a strength (Arras 2017: 55–57).

Despite these sorts of advantages, casuistry has been met with criticism. One is that the approach seems to assume a straightforwardness when it comes to deciding what counts as a case. However, as some would have it, deciding what counts as a case (or not) might well be underwritten by the bioethicist’s picture of the sorts of problems worthy (or unworthy) of appearance on the moral agenda (O’Neill 1988). It has been argued that that agenda is overly narrow and sculpted by the interests of, for example, the medical profession, and a male outlook (Carse 1991). A related but distinct point concerns what counts as an adequate description of the issues at play in a case. Casuistry, to its detriment, seems silent on this matter. Some argue that a strike against the radical version of casuistry is its recourse to analogical reasoning. Such recourse, so the thought goes, fails to properly recognize that such reasoning is not self-standing. Analogical reasoning would seem to need pre-established principles to give it direction, and radical casuistry rejects such principles. Moderate casuistry, which does use principles or generalizations to provide some structure in identifying what is morally relevant to a case and across cases (Jonsen 1995) would not be subject to this criticism.

Another concern is that given its disregard for theoretically-derived principles, radical casuistry may amount to no more than a refinement of our intuitive responses to cases. It might be thought to be morally conservative, ill-equipped for social critique, with the casuist as mere expositor of pre-ordained moral norms (Arras 2017: 60–67). Finally, the approach seems to require pre-established agreement on fundamental values in order to reach conclusions, agreement that may well be lacking in pluralistic modern society.

5.2 Narrative Ethics

A further alternative approach to ethics in general and bioethics in particular is narrative ethics. According to many commentators, it emerged in response to a so-called “theory-driven” approach to bioethics, an approach that prioritizes the Enlightenment ideas of objectivity and universality (Arras 1997: 65). Put differently, narrative ethics emerged as a response to an impartialist ethics, one working on the assumption that ethics is mainly a matter of “right conduct among strangers”. According to Hilde Lindemann Nelson, two proposals on which narrative approaches to ethics are based are that moral principles are not lawlike but are modifiable in light of context (presumably by being made more specific, or by being treated as defeasible), and that the particulars of a situation “either naturally take a narrative form, or must be given a narrative structure if they are to have moral meaning” (Lindemann Nelson 1997a: viii–ix).

Though some will say narrative ethics is somewhat difficult to pin down as a method, we can think of it as an approach to ethics that emphasizes storytelling, the importance of the voice and perspective of the storyteller and/or patient, and a literary sensibility on the bioethicist’s part. Possibilities have been proposed as to what a narrative approach to ethics might look like, suggestions as to the sorts of activities in which we might engage when we adopt a narrative approach to bioethics. These include i) simply reading stories (which sharpens one’s moral sensibilities) (Nussbaum, 1992, 1995), ii) telling stories (which is a way of making moral sense of an experience), iii) comparing stories (which brings to mind the work of the casuists), iv) conducting literary analysis in some form or other, and v) invoking stories (which we do when we introduce bioethics case studies) (Lindemann Nelson 1997a: x–xii).

Accounts vary of how narrative ethics actually functions as a tool of ethical analysis. A first option is that a narrative approach acts as a supplement to moral principles rather than as a replacement of them. On this version of narrative ethics, we are looking at a way of doing bioethics that requires sensitive attention to so-called “narrative elements” of human experience, such as stories told by patients, caregivers, and family members. There is no thought of doing away with a bioethics driven by theories and principles, just a call to use those tools with a sensitive appreciation of the first-person accounts of others (Charon 1994). Another way of thinking about narrative as a supplement to principles is to consider the way in which principles and cases share a dialectical relationship within the context of reflective equilibrium. Here, the cases in response to which we develop considered judgments are themselves narratives. So again, this conception is accommodating of moral theory, as moral theorizing and stories are mutually interdependent.

A second option has a narrative approach emphasizing the importance to ethics of history and culture over a more universalist rationality. This version of narrative ethics is sometimes known as historical narrative. Here, right action is endorsed by appeal to the traditions, norms, and traditional stories of a particular social group. Recourse is also made to one’s social role, and the foundational narrative underlying that role (think of the physician’s social role in Western culture as shaped by the Hippocratic Oath) (MacIntyre 1981; Burrell & Hauerwas, 1977).

A third option sees a narrative approach acting as a total substitute for the process of moral justification (Arras 1997: 67– 78), and as a replacement of theory-driven or principle-centered bioethics. On this option, which some associate with postmodernism, the emphasis is upon continual conversation between traditions and narratives. No one view (tradition or narrative) can be justified over others through reference to a theory of human nature, of history, and so on. The ultimate goal here then is not the pursuit of justification for one’s view, but the keeping open of the “moral space” for continuing conversation between rival views (Rorty 1989). A related aspect of this option is the claim that those who suffer should tell their own story, without risk of being dominated and objectified by the case summaries typical of modern medicine (Frank 1995). While quite specific in their vision of how narrative ethics might supplement or replace a more standardly theory-driven or principles-centered approach to bioethics, none of these versions seem to identify a unique framework for moral reasoning (in the way that, for example, utilitarianism or deontology do).

Questions have been raised about the viability of a narrative approach. A general concern is that how an emphasis on narrative relates to ethics in general. There is also question about how a narrative approach reaches conclusions about what we are supposed to do.

Insofar as two central tasks of bioethics are to pass judgments on actions, policies, and character, and to morally justify actions, decisions, and policies (or to show that justification is not possible), it is not clear how narrative ethics can satisfy the aims of bioethics, or so the concern goes. What is the relationship between narrative and moral justification? What is the connection between telling a story, say, and the moral decency of a particular action, policy, or character?

More specific concerns about the approach track the version of narrative ethics under consideration. For instance, on the historical narrative picture (the second option above), some argue there is the risk of falling back into either a version of ethics at least somewhat guided by principles, or finding oneself having to sort through incommensurable narratives with nothing to decide between them. A worry about the third option (the version on which narrative acts as a substitute for moral justification) is the threat of an objectionable subjectivism, brought on by the possibility of mistaking the narrator’s story for ethical truth. A related criticism is that this version of narrative ethics seems to prioritize individual coherence over the passing of moral judgment. Some stories, so the thought goes, may well be internally coherent, while at the same time being morally questionable (Arras 1997: 81–83).

Another distinctive approach to bioethics employs the insights of feminist ethics. Feminist approaches to bioethics offer a framework for approaching bioethics at least in the sense of developing and adhering to a certain set of theoretical commitments. Some of those commitments address forms of moral reasoning, some address substantive commitments about how to bring about a more just social order, and some address questions about which perspective should take priority in the analysis of a bioethical issue. Some contend that bioethics has largely ignored work in feminist ethics more broadly, making it all the more crucial that a feminist approach to bioethics act as a corrective to various trends (such as an inattentiveness to social context, and an emphasis on liberal individualism) (Wolf 1996a). Suggestions abound as to how a feminist approach can, and in fact does, do that.

To start, a feminist approach can pay special attention to the experiences of women. Further, it can subject to critical scrutiny the employment of the concept of a common morality, a concept which allegedly entrenches bioethics as a conversation amongst experts. Bioethics as such a conversation excludes alternative viewpoints, including the viewpoints of laypeople, and of those on the margins. A feminist approach might invoke standpoint theory, which would draw upon the insights of the most disadvantaged in society. Finally, a feminist theoretical approach could demand attention to lived experience, turning the emphasis away from the abstract theorizing of non-feminist moral philosophy and bioethics (Wolf 1996a).

Two further benefits of a feminist approach to bioethics have been set out, apart from how it might directly correct for the effects of a masculinist moral philosophy and bioethics. First, a feminist approach both attunes us to the effects of androcentric reasoning in the analysis of bioethical issues, and mitigates those effects. Second, it draws our attention to the gendered nature of many concepts key to bioethical analysis. For instance, in looking at the concepts of reason and emotion, a feminist approach helps us to see that the concepts themselves seem partly to be gendered concepts. Reason is, or at least traditionally has been, associated with the male, and emotion with the female. The same holds true with the distinction between the public and private spheres, with the public domain belonging to men, the private the women’s realm. But what’s more, we see that that which is associated with woman (emotion, for example) tends to be undervalued. As Margaret Little lays it out, traditional moral epistemology takes reason, and not emotion, to be critical to moral understanding. It is also important to notice the dualistic nature of the picture presented above. Just as men and women have traditionally occupied different spheres, so too have gendered concepts occupied fixed places on either side of a divide. The domestic sphere, for instance, is taken to have nothing instructive to offer the world of economic or political relations, or bioethics (Little 1996).

We can see these sorts of commitments played out in Susan Sherwin’s approach to the abortion question. According to her, a recognition of gender and sexual politics, and of women’s vulnerability in general and to sexual coercion in particular, are on her view crucial aspects of a feminist approach. Further, a feminist approach takes as central the moral prerogative of the women concerned, rather than focusing on such questions as fetal moral status, or on the task of formulating a set of general rules as to when abortion is or is not morally justified. In keeping with this, a feminist approach denies the possibility of a gender-neutral account of pregnancy, or of abortion decisions. From a feminist perspective, the most morally salient feature of pregnancy

is that it takes place in women’s bodies and has profound effects on women’s lives (Sherwin 1992: 363).

When we look at feminist treatments of physician-assisted dying (PAS), we again see certain kinds of theoretical commitments come to the fore. For instance, an adherence to the feminist care perspective leads Leslie Bender to support PAS (Bender 1992). By contrast, Susan M. Wolf’s application of a feminist approach as manifest by an emphasis upon the significance of gender leads her to conclude that PAS should not be legitimized. Pointing to the insidiousness of certain familiar images—images of feminine self-sacrifice, for instance—as well as to early prominent cases of physician-assisted dying and euthanasia in which the physician was male, the patient female, Wolf warns us of the dangers of the dynamic between the “powerful expert physician and the woman surrendering to his care” (Wolf 1996b: 293).

In thinking about feminist approaches to bioethics in connection to the relation between theory and bioethics, it is not a uniform approach, seeing as its proponents will not always adhere to the same set of commitments. (For example, in her work referenced above Bender adheres to a care-oriented thinking, where other feminist bioethicists will be more representative of liberal feminism.) A feminist approach is theoretical at least in its adherence to certain (feminist intellectual) commitments, even if there is not agreement across the board as to what those should be. Overall, feminist approaches to bioethics have made a significant impact and have changed the course of the conversation in bioethics, even if those approaches are somewhat varied and represent a theoretical approach to bioethics in less strictly defined a way than other approaches might. The preceding discussion focuses upon scholarly contributions; feminist scholars have also addressed clinical ethics (Sherwin & Baylis 2003). It is to the clinical realm, and moral theory’s role there, that we now turn.

7. Moral Theory and Clinical Bioethics

There are two main areas of discussion within clinical ethics that relate to the relevance of moral theory to clinical bioethics. The first concerns what is the appropriate model for clinical ethics consultation. This has implicit consequences for the role of moral theory. The second directly examines whether clinical ethics consultations should rely upon moral theory.

The American Society for Bioethics and Humanities (ASBH) sets out three possible models of clinical ethics consultation, endorsing one of them. Each model implicitly involves a picture of the role, or lack thereof, of moral theory. On the pure consensus model, the sole goal of ethics consultation is to forge agreement among those involved in the consult (ASBH 2011: 7). It would seem that there is no role for moral theory on this approach to clinical consultation, as mediation is the sole objective, with no eye held toward whether the consensus reached is morally justified through appeal to moral norms, accepted values, or moral theory. This model is generally taken to involve too weak a picture of the aims of clinical ethics consultation, and too minimal a picture of the clinical ethicist’s expertise and role. On the second model, the authoritarian model, the clinical ethicist is, by contrast, the primary moral decision maker. This model is generally taken to involve an overblown picture of the clinical ethicist’s authority and abilities, and of the infallibility of her perspective. The major downfall of this model, according to the ASBH, is that the clinical ethicist disregards the decision-making authority of others, such as a patient’s family and the health care team. Here again, moral theory has no explicit role, though it does seem possible and even likely that the clinical ethicist, in making her unilateral decision, invokes some moral theory or other in doing so.

The third model, the ethics facilitation approach, is the approach endorsed by the ASBH, and there is general consensus in the field that this is the best model for clinical ethics consultation. Here, the consultant helps to make clear the moral issues at play, aids in communication, integrates the viewpoints of relevant stakeholders (ASBH 2011: 7). Importantly for the current discussion, this approach involves two main parts: identifying and analyzing of what is the moral issue at stake, and facilitating of a principled ethical resolution. This second task is of particular interest to us here, because one would think that the building of such a resolution would involve looking to moral theory of some type or other, in addition to simply consulting the ethics literature. How else will one adjudicate whether the resolution falls within clearly accepted ethical principles? After all, the clinical ethicist is tasked not only with facilitating a resolution, but with suggesting a range of ethically acceptable options and providing a rationale for each option. In specifying an acceptable range of possible options, an ethics consultant will draw on a knowledge of relevant institutional policies, laws, the scholarly literature, and presumably also of moral theory.

Turning to the second area of discussion, we have a more explicit look at the role of moral theory in clinical ethics consultation. Four important roles for moral theory in clinical ethics consultation have been suggested:

• aiding in the initial awareness and identification of the moral challenges;
• assisting in the analysis of moral challenges;
• contributing to a sound process and dialogue;
• inspiring an attitude of reflexivity and interpretation (Magelssen, Pedersen, & Førde 2016, 27–31).

The advantages of a clinical ethicist’s being familiar with moral theory have also been discussed. There is some advantage not just in using a moral theory to help one analyze and formulate arguments, but also in considering the variety of perspectives and questions made perspicuous by various ethical theories, and the issues they illuminate. As well, when it comes to the consistency of a clinical ethicist’s own argumentation, familiarity with moral theory will help clinical ethicists spot weaknesses in their own arguments or in those of others.

However, matters are not quite so simple. To start, it is possible for those with no training in moral philosophy to have a solid handle on the moral dilemma with which they are dealing. And at the same time, some say, having a philosopher, one who is an expert in moral theory, as a clinical ethicist does not guarantee that the ethics consult will be of high quality. Knowledge of moral theory within the clinical ethics realm is not always clearly helpful, and its possible benefits are not without accompanying drawbacks. First, if used too strictly, and adhered to too inflexibly, moral theories can hamper moral imagination and intuition, and obscure access to the insights of, for example, common morality. Second, those in command of a wide range of moral theories might be tempted to draw upon the moral theory that actually justifies a course of action already preferred or even settled upon, rather than use what is deemed in advance to be the best moral theory to work through what is the justifiable course of action (or what are the best action options). Third, moral theories can mislead, by, for instance, being used to frame cases in ways that emphasize irrelevancies. And fourth, without quite advanced knowledge and skill, ethical theories may easily be misunderstood and used improperly. An example here would be taking Kantian moral theory to mandate no person ever being treated as a means (Magelssen, Pedersen, & Førde 2016). The message here is that knowledge of moral theory can sometimes actually be an impediment to good clinical ethics.

Overall, moral theory has a role to play in clinical ethics, at least if we accept the goals of ethics consultation as assumed by the generally accepted model of ethics consultation. The more explicit conversation in this area recognizes the advantages the use of moral theory offers clinical ethics and the consultation process. However, the discussion in the literature also cautions against a wholesale endorsement of the notion that those working in clinical ethics are always better for having an in-depth knowledge of moral theory.

What is the relation between moral theory and bioethics? There is no straightforward answer to this question. So much depends upon whether we consider bioethics in its academic, clinical, or policy-oriented instantiations. And further, there is wide variance in what we have in mind when we talk about moral theory. Besides this, the very distinction between moral theory, on the hand, and the problems and issues to be addressed in the practical realm, on the other, has been called into serious question. Still and all, it is difficult to imagine bioethics (in any form) in the total absence of moral theory. Especially if modestly conceived as a set of substantive organizing assumptions about morality, and a commitment to a certain approach to moral reasoning, it is difficult to view moral theory as anything other than indispensable to bioethics.

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• Gert, Bernard, Charles M. Culver, and K. Danner Clouser, 2006, Bioethics: A Systematic Approach , second edition, New York: Oxford University Press. doi:10.1093/0195159063.001.0001
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• Kymlicka, Will, 1993 [1996] , “Moral Philosophy and Public Policy: The Case of NRTs”, Bioethics , 7(1): 1–26. Slightly revised in Philosophical Perspectives on Bioethics , L.W. Sumner and Joseph Boyle (eds.), Toronto: University of Toronto Press, 1996, 244–270. doi:10.1111/j.1467-8519.1993.tb00268.x
• Lindemann Nelson, Hilde, 1997a, “Introduction: How to Do Things with Stories”, in Lindemann Nelson 1997b: vii–xx.
• ––– (ed.), 1997b, Stories and Their Limits: Narrative Approaches to Bioethics , New York: Routledge.
• Little, Margaret Olivia, 1996, “Why a Feminist Approach to Bioethics?”, Kennedy Institute of Ethics Journal , 6(1): 1–18. doi:10.1353/ken.1996.0005
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• MacIntyre, Alasdair, 1981, After Virtue: a Study in Moral Theory , Notre Dame, IN: Notre Dame University Press.
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• Magelssen, Morten, Reidar Pedersen, and Reidun Førde, 2016, “Four Roles of Ethical Theory in Clinical Ethics Consultation”, The American Journal of Bioethics , 16(9): 26–33. doi:10.1080/15265161.2016.1196254
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How to cite this entry . Preview the PDF version of this entry at the Friends of the SEP Society . Look up topics and thinkers related to this entry at the Internet Philosophy Ontology Project (InPhO). Enhanced bibliography for this entry at PhilPapers , with links to its database.

• Arras, John, “Theory and Bioethics,” Stanford Encyclopedia of Philosophy (Fall 2020 Edition), Edward N. Zalta (ed.), URL = < https://plato.stanford.edu/archives/fall2020/entries/theory-bioethics/ >. [This was the previous entry on Theory and Bioethics in the Stanford Encyclopedia of Philosophy — see the version history .]
• Ethics , entry by James Fieser (University of Tennessee/Martin) in the Internet Encyclopedia of Philosophy .
• Bioethics , entry by John-Steward Gordon (University of Cologne) in the Internet Encyclopedia of Philosophy .

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Case - HeLa Cells

A case study that is part of unit 7 of the  Course on Genomics, Ethics and Society .   This case provides a synopsis of the case of Henretta Lacks and and issues of intellectual property and consent around the use of genetic material for research.

Many scientists and doctors have claimed that the biggest challenge to using genomic data for advanced medical therapy and research is limited access to genetic information (Kohane, 2011; Presidential Commission for the Study of Bioethics, 2012). Accurate diagnosis and treatment of diseases requires tremendous amounts of data, especially for rare cases. Ready access to this information also allows for quicker diagnoses (e.g., days instead of weeks), which can mean the difference between life and death for some patients.

However, many experts have argued that current management of genetic information puts privacy at risk, and have thus advocated for greater limitations on access to genetic information (Ahmed, 2013; Gutmann & Wagner, 2013; Presidential Commission for the Study of Bioethics, 2012). Though genetic data can provide many benefits, both for individuals whose data it is and for public health, the release of genetic information can also cause great harm. For example, revealing genetic evidence for the presence of mental illness could lead to social stigma or cause psychological harm. It could also be used against individuals in legal contexts, such as custody battles. This is especially worrisome given how easy it is to obtain a sample for DNA testing (e.g., from a toothbrush).

Another cause for concern is that learning about an individual’s genome also reveals information about family members, many who will not have offered consent for their data to be revealed. Genetic information can be used to make diagnoses, to assign medications, and to identify potential risks based on demographic information. But some people might not want to know these things about themselves, and consent from one family member does not constitute consent for all.

Nonetheless, many doctors and researchers have argued that gene research and therapy cannot be successful without changing the way we manage privacy and consent (Green et al., 2011; Jensen, Jensen, & Brunak, 2012; Kohane, 2011). One major issue is the lack of accessibility for different databases and connection between databases. Many patients’ data are released only to specific databases and for specific purposes, a practice that is thought to protect privacy (Presidential Commission for the Study of Bioethics, 2012). For instance, a bill being considered in California would require researchers to request permission for each different study or potentially to discard genetic data after it has been used for its specified purpose (Shen, 2012). However, this seriously limits the use of genetic information for therapy and research. Since patients’ data is usually anonymized, they cannot be contacted again in the future in order to obtain consent for additional research, nor can their previous results be compared to later results.

Another problem is the lack of standardized consent that would make participation in genetic studies easier. The default format, particularly in the U.S., is for patients to “opt-in” to genetic research programs in order for their genetic data to be retained. This usually results in decreased participation, compared to a default where patients must opt-out in order to have their data excluded. Opt-in defaults are also used in order for patients to have their data marked with identifiable information, so doctors and researchers can track them over time. Anonymizing data ensures a level of privacy, but some argue that patients should be encouraged more strongly to consider making they and their data identifiable for future research.

Currently, in the U.S., the Genetic Information Nondiscrimination Act of 2008 (GINA) is the primary federal legislation in place to protect against the misuse of genetic testing (Presidential Commission for the Study of Bioethics, 2012). However, GINA primarily prohibits discrimination in the context of employment and health insurance based on the results of genetic tests. It does not provide any protection against violations of privacy, nor does it prescribe rules for obtaining consent for genetic research. The Presidential Commission for the Study of Bioethics has argued that what is needed are restrictions that go beyond GINA, and ensure privacy, but do so while still facilitating good research.

Consider the case of Henrietta Lacks (“Privacy and protection,” 2013; Skloot, 2013). In 1951, she was diagnosed with cervical cancer and died soon after. However, cells from her tumor were taken and stored, without her or her family’s consent, and subsequently became the source for numerous scientific studies, including various cancer medications. Recently, her genetic information—based on what are now known as HeLa cells—was made widely available and partially released to the public. Lacks’ family objected to this as an invasion of privacy and the National Institute of Health (NIH) assigned a task force to protect and limit access to HeLa cell information.

• Imagine you are a member of the NIH task force. What level of access would you allow for researchers and doctors wishing to use the HeLa genome? Would you anonymize this data for future studies? You are told that any recommendations you make will be applied to other cases of access to genetic data. What general recommendations would you make, given some commitment (you can argue about how much) to the goals both of allowing for progress in genomic medical research, and for protecting the privacy of individuals' genomic data?
• Ahmed, A-K. (2013, August 14). Unhidden traits: Genomic data privacy debates heat up.  Scientific American.  Retrieved from http://www.scientificamerican.com/article.cfm?id=unhidden-traits-genomic-data-privacy-debates-heat-up.
• Buchanan, A. (2010).  Beyond humanity? The ethics of biomedical enhancement . Oxford: Oxford University Press.
• Green, E. D., Guyer, M. S., & National Human Genome Research Institute (2011). Charting a course for genomic medicine from base pairs to bedside.  Nature, 470 , 204-213.
• Gutmann, A., & Wagner, J. W. (2013). Found your DNA on the web: Reconciling privacy and progress.  The Hastings Center Report ,  43,  15-18.
• Jensen, P. B., Jensen, L. J., & Brunak, S. (2012). Mining electronic health records: towards better research applications and clinical care.  Nature Reviews Genetics, 13 , 395-405.
• Kohane, I. S. (2011). Using electronic health records to drive discovery in disease genomics.  Nature Reviews Genetics, 12 , 417-428.
• Presidential Commission for the Study of Bioethics (U.S.) (2012, October).  Privacy and progress in whole genome sequencing . Retrieved from http://bioethics.gov/sites/default/files/PrivacyProgress508_1.pdf.
• Privacy and protection in the genomic era (2013, September 6).  Nature Medicine, 19 , 1073. Retrieved from http://www.nature.com/nm/journal/v19/n9/full/nm.3342.html.
• Shen, H. (2012, May 18). California considers DNA privacy law.  Nature .
• Skloot, R. (2013, March 23). The immortal life of Henrietta Lacks, the sequel.  The New York Times . Retrieved from http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?_r=0.

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This material is based upon work supported by the National Science Foundation under Award No. 2055332. Any opinions, findings, and conclusions or recommendations expressed in this material are those of the author(s) and do not necessarily reflect the views of the National Science Foundation.

• Cases in Medical Ethics: Student-Led Discussions
• Markkula Center for Applied Ethics
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Cases in Medical Ethics

Student-led discussions.

A selection of medical ethics cases designed to help determine whether medicine is the correct calling for pre-medical students.

I was a Hackworth Fellow for the Markkula Center for Applied Ethics at Santa Clara University. I was also a pre-medical student, and am currently attending the Loyola University Chicago Stritch School of Medicine. During my senior year at Santa Clara, I led discussions on medical ethics with students interested in medicine. The purpose of these discussions was two-fold. First, they were created to help bring current ethical issues onto our campus. Second, they were intended to help students who were interested in a career in the health sciences determine whether or not medicine is their correct calling. Most of the discussions followed a simple format. One to two cases were formulated for the students to read. Then I presented the students with various questions related to some of the ethical issues contained in the situations described. The following cases are the ones that I presented to the groups. Each case also has a short history and summary of the ethical issues being reviewed. The questions I asked of the students are included as well. These cases and questions are public domain, and can be re-used or modified for educational purposes. I hope that you find them useful, and that they spawn the same thoughtful enjoyment in you as they did in me.

Note: The cases were not based on specific events. However, it is possible that they share similarities with actual events. These similarities were not intended.

Autonomy essentially means "self rule," and it is a patient's most basic right. As such, it is a health care worker's responsibility to respect the autonomy of her patients. However, at times this can be difficult because it can conflict with the paternalistic attitude of many health care professionals. The following two cases address patient autonomy. The first involves the rights of an individual to decide her own fate, even against her physicians' judgments. The second case involves the rights of a parent to care for her child in the manner that she sees fit.

A woman enters the emergency room with stomach pain. She undergoes a CT scan and is diagnosed with an abdominal aortic aneurysm, a weakening in the wall of the aorta which causes it to stretch and bulge (this is very similar to what led to John Ritter's death). The physicians inform her that the only way to fix the problem is surgically, and that the chances of survival are about 50/50. They also inform her that time is of the essence, and that should the aneurysm burst, she would be dead in a few short minutes. The woman is an erotic dancer; she worries that the surgery will leave a scar that will negatively affect her work; therefore, she refuses any surgical treatment. Even after much pressuring from the physicians, she adamantly refuses surgery. Feeling that the woman is not in her correct state of mind and knowing that time is of the essence, the surgeons decide to perform the procedure without consent. They anesthetize her and surgically repair the aneurysm. She survives, and sues the hospital for millions of dollars. Questions for Case 1:

Do you believe that the physician's actions can be justified in any way?

Is there anything else that they could have done?

Is it ever right to take away someone's autonomy? (Would a court order make the physicians' decisions ethical?)

What would you do if you were one of the health care workers?

You are a general practitioner and a mother comes into your office with her child who is complaining of flu-like symptoms. Upon entering the room, you ask the boy to remove his shirt and you notice a pattern of very distinct bruises on the boy's torso. You ask the mother where the bruises came from, and she tells you that they are from a procedure she performed on him known as "cao gio," which is also known as "coining." The procedure involves rubbing warm oils or gels on a person's skin with a coin or other flat metal object. The mother explains that cao gio is used to raise out bad blood, and improve circulation and healing. When you touch the boy's back with your stethoscope, he winces in pain from the bruises. You debate whether or not you should call Child Protective Services and report the mother.

Questions for Case 2:

Should we completely discount this treatment as useless, or could there be something gained from it?

When should a physician step in to stop a cultural practice? (If someone answers "when it harms the child" remind that person that there is some pain in many of our medical procedures, for example, having one's tonsils removed)

Should the physician be concerned about alienating the mother and other people of her ethnicity from modern medicine?

Do you think that the physician should report the mother?

Autonomy Part 2 Maintenance of patient autonomy is one of the major ethical focuses of physicians. Therefore, a second discussion was also held that focused primarily on patient autonomy. This discussion also took a superficial look at euthanasia. For this discussion, a 58 minute video, Dax's Case (produced by Unicorn Media, for Concern for Dying ; produced by Donald Pasquella, Keith Burton ; directed by Donald Pasquella New York : Filmmakers Library, c1984) was used. The video tells the story of Dax Cowart, a man who was severely burned by an accidental propane explosion. The burns disabled Dax, and the physicians forced treatment on him. Though he survived the treatment, he still argues that he should have been allowed to refuse it so that he could die. The video is very useful; however, the videos of Dax's burn treatments are very graphic and the video should be reviewed before it is shown to a group of students.

In the video, one of the physicians says that burn patients are incompetent to make decisions when they first enter the hospital because they are in such a great deal of pain. However, patients such as Dax can be in a great deal of pain for a very long time. In such cases, what should be done to determine competence, and when should this be done?

Do you think the fact that Dax could not see a future for himself should have been taken into account when determining his competency? Could this have clouded his judgment? (He thought that he would end up on the street corner selling pencils)

Do you think that the fact that Dax was going to recover, and had the possibility of living a happy life, made not treating Dax like suicide… or murder? What if he did not have this possibility?

After his recovery, Dax attempted suicide. Should the physicians have let him die? Is it ever correct for a doctor to allow a patient to kill himself?

Do you ever think that it is correct for a physician to break a competent patient's autonomy? If so, is this one of those cases?

Do you think that in this case, that the ends justified the means?

The word "euthanasia" draws its roots from Greek meaning "good death." As it is used in this discussion, it means "the act of ending the life of a person suffering from either a terminal illness, or an incurable disease." The AMA is against physicians assisting in euthanasia. There is currently only one state in the US that allows for euthanasia, and that is Oregon, where in 1997, the "Death With Dignity Act" went into effect. Euthanasia advocates stress that it should be allowed as an extension of a person's autonomy. Those who are against euthanasia often say that it can lead to the devaluation of human life, and to a slippery slope in which the old and disabled will be killed on the whims of healthy people. We examined one case and the Oregon law to view the ethics of euthanasia.

Case One: A woman was diagnosed with motor neurone disease (the same disease that Stephen Hawking has) 5 years ago. This is a condition that destroys motor nerves, making control of movement impossible, while the mind is virtually unaffected. People with motor neurone disease normally die within 4 years of diagnosis from suffocation due to the inability of the inspiratory muscles to contract. The woman's condition has steadily declined. She is not expected to live through the month, and is worried about the pain that she will face in her final hours. She asks her doctor to give her diamorphine for pain if she begins to suffocate or choke. This will lessen her pain, but it will also hasten her death. About a week later, she falls very ill, and is having trouble breathing.

Questions for Case 1:

Does she have a right to make this choice, especially in view of the fact that she will be dead in a short while (say six hours)? Is this choice an extension of her autonomy?

Is the short amount of time she has to live ethically relevant? Is there an ethical difference between her dying in 6 hours and dying in a week? What about a year, and how do you draw this distinction?

Is the right for a patient's self-determination powerful enough to create obligations on the part of others to aid her so that she can exercise her rights? She clearly cannot kill herself. She can't move, but should someone be FORCED to help her, or to find someone to help her?

Should the money used to care for this woman be taken into account when she is being helped? Do you think that legalizing euthanasia could create conflicts of interest for the patient/ or the doctor? Will people feel that they need to end their lives earlier to save money?

Ask each student: If you were the physician, what would you do? Note: if you would pass her off to another doctor knowing he or she would do it, does this free you from you ethical obligations?

Oregon's Death With Dignity Act: We discussed the following questions pertaining to the Death With Diginity Act.

Death With Dignity Questions:

Look at the requirements for the request. Do you see any problems with them? (The woman from case 1 would not qualify.)

Why would they put in these guidelines? Should they be there, if they keep a competent person like the woman above from living her autonomy? (Is it to protect the doctors so they will not have to GIVE the medication?)

Is there a moral difference between prescribing the drug and actually giving it to the patient? If not, why put in the rules?

Why do you think they wouldn't let a person who is terminally ill and in pain with possibly more than 6 months receive assistance in dying? Say someone is diagnosed with HIV?

Does the justification of euthanasia necessarily justify the assisted suicide of a healthy person?

Do you think a weakness of this law is the probability of patients being influenced by family members? (For example, for financial or other reasons?) Note: Approximately 60% of Oregonians in 2000 said (before they died) that they used the prescription at least in some part due to fear of being a burden on their family.

The AMA says that euthanasia is fundamentally incompatible with the physician's role as healer. What do you think about this statement? Why should a physician have to be the one who does this?

Assisted Reproduction:

This is a difficult subject because it involves reproductive issues. In our culture, reproductive liberty, the freedom to decide when and where to conceive a child is highly protected, and this can make these cases much more difficult.

Case 1: There are two types of surrogacy. One type involves a surrogate mother who uses her own egg and carries the baby for someone else. The other type is a "gestational surrogacy" in which the mother has no genetic tie to the child she carries. In the case presented, a gestational surrogate is used.

A woman, after a bout with uterine cancer had a hysterectomy (surgical removal of the uterus). Before, its removal, however, she had several eggs removed for possible fertilization in the future. Now married, the woman wishes to have a child with her husband. Obviously she cannot bear the child herself, so the couple utilizes a company to find a surrogate mother for them. The husband's sperm is used to fertilize one of the wife's eggs, and is implanted in the surrogate mother. The couple pays all of the woman's pregnancy-related expenses and an extra $18,000 as compensation for her surrogacy. After all expenses are taken into account the couple pays the woman approximately $31,000 and the agency approximately $5,000. Though the surrogate passed stringent mental testing to ensure she was competent to carry another couple's child, after carrying the pregnancy to term, the surrogate says that she has become too attached to "her" child to give it up to the couple. A legal battle ensues.

In the United States it is illegal to pay a person for non-replenishable organs. The fear is that money will influence the poor to harm their bodies for the benefit of the rich. Do you see a parallel between this case and this law? Can allowing surrogate mothers to be paid for their troubles allow poorer women to be oppressed?

Does paying the surrogate harm her and/or the child's dignity?

Is it selfish/conceited for this couple to want children of their own genetic make-up? If yes, does this change if you can "easily" have a child? (Note: Over 100,000 children in the U.S. are waiting to be adopted. However, most are older, have several siblings, or have special needs.)

On their website, the AMA says "that surrogacy contracts [when the surrogate uses her own egg], while permissible, should grant the birth mother the right to void the contract within a reasonable period of time after the birth of the child. If the contract is voided, custody of the child should be determined according to the child's best interests." Do you see any problems with this? (What's a reasonable time? In a way can you steal the surrogate's child?)

One of the main arguments against the use of surrogate mothers is that carrying and giving birth to a child is such an emotional event that it is impossible to determine if the surrogate will be able to give up the child. Though adults enter into the contract, the child could ultimately suffer if a long custody battle ensues (as it could in states where surrogacy contracts hold no legal value, such as Virginia). With the possibility of such battles, do you think it is acceptable for parents to use a surrogate mother?

Do you think that if the surrogate is awarded the baby, this could cause emotional harm to the child?

Who do you think should receive the child, and why?

A married couple wishes to have a child; however, the 32 year old mother knows that she is a carrier for Huntington's disease (HD). HD is a genetic disorder that begins showing signs at anywhere from 35-45 years of age. Its symptoms begin with slow loss of muscle control and end in loss of speech, large muscle spasms, disorientation and emotional outbursts. After 15-20 years of symptoms HD ends in death. HD is a dominant disorder which means that her child will have a 50% chance of contracting the disorder. Feeling that risking their baby's health would be irresponsible, the couple decides to use in vitro fertilization to fertilize several of the wife's eggs. Several eggs are harvested, and using special technology, only eggs that do not have the defective gene are kept to be fertilized. The physician then fertilizes a single egg, and transfers the embryo to the mother. Approximately 9 months later, the couple gives birth to a boy who does not carry the gene for the disorder.

Is this a case of eugenics? "Eugenics" is defined as "the hereditary improvement of the human race controlled by selective breeding" (dictionary.com)

Would it be acceptable for the parents to select for sex as well, or should they only select an embryo that does not have HD? How would this be different?

Is it ethical for this couple to have a baby when the mother could begin showings signs of HD when the baby is just a few years old?

With this technology possible, would it be ethical for this couple to have a child without genetically ensuring it would not have the disease? What if we did not have this technology, would it be ethical for a known carrier to have a child? (If not, how far should this carry? a carrier for cystic fibrosis ( which is recessive)? )

Weighing everything we have discussed, do you believe the couple acted ethically?

Response To Bio-Terrorism

The possibility of terrorists using biological weapons on the citizens of the United States has been a major topic in the press for the last several years. Smallpox has been speculated to be the perfect biological terror agent because of the potency of the virus, and because of the lack of herd immunity present in the US population. The following case presents a possible way in which the virus could be released in the population and a possible response. The questions following the case involve the ethics surrounding the government's response.

Smallpox Facts:

Smallpox initially has flu-like symptoms, which are recognizable 7-19 days after exposure. After 2-4 days of flu-like symptoms, the fever begins to decrease, and pox will form.

An infected person is contagious one day before the characteristic pox appear.

Approximately 30-50% of unvaccinated people exposed to smallpox will contract the disease.

The mortality rate for smallpox was approximately 20-40%.

The vaccine that was used was approximately 90% effective.

It is possible that if terrorists were to use the smallpox virus, that they would genetically modify it. If this were the case, then the vaccine may not prevent all of the disease symptoms for those vaccinated.

Facts gathered from: http://www.vbs.admin.ch/ls/e/current/fact_sheet/pocken/

Date: June 22, 2005. A 27-year-old man is brought into a New York City emergency room with a 101-degree fever, and what he believes is chickenpox (Varicella). After a brief examination, the 35-year-old physician is puzzled because the pox do not appear to be typical of the varicella-zoster virus. Worried, he calls in another physician for her opinion. She takes one look at the patient, determines he has small pox, and immediately orders him to be quarantined. She notifies the Centers for Disease Control and Prevention (CDC) and asks them what should be done. While doing background on the patient, he tells the physicians that he is a flight attendant and that he has flown to Orlando, FL, Los Angeles, CA, Chicago, IL, and Seattle, WA in the past few weeks while working. Though he is given excellent treatment, and had been in perfect health a few days earlier, the patient dies 7 hours after admittance to the hospital.

The CDC decides that mandatory small pox vaccines will be administered to all workers in the NYC hospital, and to all patients who were in the ER. His co-workers are all given mandatory vaccines as well, as are all people living in his apartment complex. They also ship stored quantities of the vaccine to all of the cities where the man had flown to for work. The vaccines are offered to citizens of these cities. Finally, all people, along with their families who had been on the man's flights in the weeks preceding the appearance of the disease are forced to receive the vaccine.

Questions: Note: The flight attendant was most likely given small pox by a bio terrorist who flew on his plane sometime during the past week/week and a half. The terrorist would have been contagious but would not have shown symptoms. Virtually every person the man came into contact with would have gotten the virus.

Is it ethical for the CDC to force people to get the vaccine?

An LA woman on the flight is religiously opposed to vaccines. Under California law she can normally refuse vaccines on religious or personal grounds. However, the government says she must receive the vaccine or face mandatory quarantine. What do you think of this?

Do you think that for more common diseases, for example measles, that it is ethical for the state to allow people to refuse vaccines (even for religious grounds)? What if their refusal can harm others who cannot have the vaccine, such as people who are immunocompromised like AIDS patients?

Is it ethical for someone to refuse the vaccine?

You had driven down to Los Angeles 5 days ago to visit a friend for the weekend. While in town, you visited many tourist attractions. You are worried and you try to get the vaccine, but are denied it because of limited resources. What do you think of this?

Citizens begin calling for the mandatory quarantining of people directly exposed to the victim, i.e those living in his apartment complex, those working in the ER, those who flew on the plane in the prior week. What do you think of this?

The smallpox vaccine, like many other vaccines (example: oral polio vaccine) can actually transmit the virus to others. In light of this, is it ethical for people to get the vaccine? (Note: they are vaccinating those who may not want to be vaccinated)

Today, should health care workers be allowed/forced to get the smallpox vaccine? What about non-health care worker citizens?

Morningside Campus Access Updates

Faculty - June 22, 2021

Why Bioethics Matters: Four Key Takeaways

When the WHO declared a pandemic last year, the field of bioethics took center stage in public life. Suddenly, conversations about quality of health care, trust in medicine, and access to vaccines were taking place at dinner tables around the world. But what else does bioethics encompass and why does it matter? Bioethics centers issues such as patient rights, reproductive technology and medical regulation. In a lecture entitled “Why Bioethics Matters,” Dr. Robert Klitzman defines four underlying principles: autonomy, beneficence, non-maleficence, and justice. Here are four takeaways from Dr. Klitzman’s lecture.

1. We have to always consider the “human side” of medicine.  

Dr. Klitzman consistently emphasizes the importance of paying attention to underlying issues in medicine which pertain to an individual’s quality of life. He says health care providers should question the assumptions they make and consider the “social, psychological, moral, cultural and ethical issues in health care.” That is where bioethics comes in. However, as it is a relatively new field, there are several complex questions and issues to work through as the research advances. 

2. We must examine history to learn from ethical failures in health care.

Bioethics is crucial because devastating mistakes have been made by the medical community in the name of advancing research. Dr. Klitzman offers examples of the Tuskegee Syphilis Study, in which scientists used African American men to study untreated syphilis, as well as the brutal experiments conducted on human beings by Nazis. The goal of bioethics is to prevent these acts from being carried out under the guise of science. 

3. There are fundamental philosophical questions to consider when approaching bioethics. 

Why should health care be considered a right? What treatments and services should every person be given equal, immediate access to? These are the basic dilemmas surrounding ethical health care. However, bioethics aims to respond to even more complicated and controversial questions. Can organs be taken for donation once someone is “brain dead,” but while the heart and lungs are still working through a machine? Will new gene editing technologies like CRISPR worsen inequality, with wealthy families using the ability to pick traits to design specific, potentially healthier, embryos? The medical community will continue to encounter these questions as research progresses, and as the decisions made will impact all of us, it is vital to prepare for such challenges. 

4. It is important to remember the perspective of the patient

Dr. Klitzman shares several impactful stories to highlight the importance of considering a patient’s perspective. He shares his family’s experience of deciding whether or not to treat his father’s leukemia with an experimental chemotherapy treatment, and how that impacted his view on end of life quality and care. In his book, When Doctors Become Patients , Dr. Klitzman collects stories from doctors about the lessons they learned being on the other side of serious illness. The clarity of options provided to patients and language used by doctors are two key elements of improving care. While writing the book, Dr. Klitzman realized that when you, yourself, or a loved one faces mortality, you truly realize the incredible importance of the emotional, social, and psychological aspects of treatment.

Learn about Columbia University’s Bioethics M.S. program

Robert Klitzman, M.D.

Program Director, Bioethics; Professor of Psychiatry, Columbia University Irving Medical Center

What is Bioethics?

“Bioethics” is a term with two parts, and each needs some explanation. Here, “ethics” refers to the identification, study, and resolution or mitigation of conflicts among competing values or goals. The ethical question is, “What should we do, all things considered?” The “bio” puts the ethical question into a particular context.

Bioethics is commonly understood to refer to the ethical implications and applications of the health-related life sciences. These implications can run the entire length of the bench-to-bedside “translational pipeline.” Dilemmas can arise for the basic scientist who wants to develop synthetic embryos to better study embryonic and fetal development, but is not sure just how real the embryos can be without running into moral limits on their later destruction. How much should the scientist worry about their potential uses?

Once treatments or drugs are in clinical trials involving human subjects, a new set of challenges arise, from ensuring informed consent, to protecting vulnerable research participants to guarantee their participation is voluntary and informed. Eventually, some of these new approaches exit the pipeline and are put into practice, where providers, patients, and families struggle with how to best align the risks and benefits of treatment with the patient’s best interest and goals. The added costs of new therapies inevitably strain available resources, forcing hard choices about how to fairly serve the needs of all, especially those already underserved by the health care system.

Questions in bioethics aren’t just for “experts.” Discussions of bioethical challenges take place in the media, in the academy, in classrooms, but also in labs, offices, and hospital wards. They involve not just doctors, but patients, not just scientists and politicians, but the general public.

Below you will find information on some specific areas within bioethics, as well as connections to a variety of related educational resources.

• Clinical Ethics
• Blog: Charlie Gard: An Unnecessary Tragedy?
• Podcast: Clinical and Legal Perspectives on Brain Death: Stahl and Tomlinson - Episode 11
• Video: Plastic Surgery Ethics: An Oxymoron?
• Faculty profiles: Jennifer McCurdy , Len Fleck
• Health Policy
• Blog: Dawn of False Hope: Spread of "Right To Try" Laws across the U.S.
• Podcast: Organ Donation Models: Eijkholt and Fleck - Episode 8
• Video: What's the point of Michigan's vaccine waiver education requirement?
• Faculty profile: Len Fleck

Table of Contents

Neuroethics, clinical neuroethics, precision medicine, reproductive ethics, research ethics, shared decision-making, social determinants of health, bioethics resources.

Recorded Webinar Archive: this free archive of recorded lectures from our Bioethics Public Seminar Series contains videos on a wide variety of topics from expert speakers. Recent webinars include:

• Precision Medicine and Distributive Justice: Wicked Problems for Democratic Deliberation
• Healthcare Artificial Intelligence Needs Patient Data: Who “Owns” the Data About You?
• Controversies and Complexities in LGBTQ Health Care

Podcast: No Easy Answers in Bioethics is our monthly podcast series featuring Center faculty and collaborators. Recent episodes include:

• Social Justice-Oriented Bioethics: Kelly-Blake and Valles - Episode 25
• Insight into the Telehealth Landscape: Bogdan-Lovis and Pletcher - Episode 24
• Supporting Michigan’s Agricultural Community: Karbowski, Kelly-Blake, and Millerick-May - Episode 23

Blog: Bioethics in the News is our monthly blog series addressing timely bioethics issues. Recent posts include:

• Police violence as a reproductive justice issue
• Counting Women of Color: Being angry about “missing white woman syndrome” is not enough
• Antiseptic Rhetoric: Crisis Standards of Care
• Blog: Gene Editing: God’s Will or God’s Won’t
• Podcast: Ethical Implications of Gene-Editing Human Embryos: Eijkholt and Fleck – Episode 13
• Video: Expanded Carrier Screening for an Increasingly Diverse Population: Embracing the Promise of the Future or Ignoring the Sins of the Past?
• Blog: Can brain scans spot criminal intent?
• Podcast: Public Perception of Psychiatric Interventions: Cabrera, Bluhm, and McKenzie – Episode 5
• Video: Recurrent and Neglected Ethical Issues in the Psychiatric Brain Stimulation Discussion
• Faculty profile: Michelle T. Pham

Clinical neuroethics is a field at the intersection of neuroethics and clinical ethics, two dynamic and exciting disciplines. While neuroethics has developed at a time that neuroscience is making significant discoveries and developments at a rapid pace, clinical ethical questions have been on the table since the beginning of medicine. Clinical neuroethics combines these well-established issues with issues raised by interventions, drugs, and treatments that impact mental and neurological states. For example, the use of ventilators generated questions about who is alive and who is dead, as ventilators could keep blood circulating and oxygen flowing. Now, imaging tools can detect brain functions in those who appear clinically dead, and these questions arise anew. Clinical neuroethics addresses topics such as consciousness, death, deep brain stimulation, pain, and enhancement in the clinical setting.

• Blog: Transplant Headaches: Head transplant on the horizon
• Blog: Should we improve our memory with direct brain stimulation?
• Blog: Precision Medicine/Ambiguous Ethics?
• Video: Crossing the Biology to Pathobiology Threshold: Distinguishing Precision Health from Precision Medicine
• Blog: Signed Off: Unconsented-To Cesarean Section, A Quarter Century After A.C.
• Video: Intentional Parenthood’s Promise: Redefining Legal Parentage for the 21st Century
• Blog: Thorny Questions After a French Clinical Trial Goes Wrong
• Video: What We Have Already and Have Still to Learn from Historical Unethical Research
• Blog: Concussion in the NFL: A Case for Shared Decision-Making?
• Podcast: Activating and Empowering Patients: Hart-Davidson, Kelly-Blake, and Olomu – Episode 15
• Video: Shared Decision-Making: The Gold Standard in Patient-Centered Care, But is it Achievable?
• Faculty profile: Karen Kelly-Blake
• Blog: Incarcerated AND Sick: At Risk for Pain, Injury, and Death
• Video: Social Determinants of Behavioral Health
• Faculty profiles: Karen Kelly-Blake , Sean Valles

Free vector graphics from vecteezy.com

Cultural Relativity and Acceptance of Embryonic Stem Cell Research

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Main Article Content

There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities.

INTRODUCTION

Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve.

Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes. [1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research. [2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.” [3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops. [4]  Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture.

I.     Global Cultural Perspective of Embryonic Stem Cells

Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense, [5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research. [6] Consequently, global engagement in ESC research depends on social-cultural acceptability.

a.     US and Rights-Based Cultures

In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism, [7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.” [8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed. [9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field. [10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture. [11]

b.     Ubuntu and Collective Cultures

African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama , which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,” [12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth. [13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value. [14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society.

Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.” [15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail.

Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable. [16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus [17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines. [18]

Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim. [19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research. [20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF.  Their use is conditioned on consent, and available only to married couples. [21] The community's receptiveness to stem cell research depends on including communitarian African ethics.

c.     Asia

Some Asian countries also have a collective model of ethics and decision making. [22] In China, the ethics model promotes a sincere respect for life or human dignity, [23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life. [25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research. [26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions. [27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency. [28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021. [29] However, issues still need to be addressed in implementing effective IRB review and approval procedures.

The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy, [30] research ethics should also adapt to ensure respect for the values of its represented peoples.

Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies. [31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells. [32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval, [33] and in another instance, the oocyte source was unclear and possibly violated ethical standards. [34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust.

d.     Middle East

Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells, [35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research. [36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors. [37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so. [38]

Jordan has a positive research ethics culture. [39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial. [40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation. [41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.” [42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes.

e.     Europe

In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected. [43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44]

For example, in Germany, Lebenzusammenhang , or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.” [45]  Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount. [46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007. [47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization. [48] Spain’s approach differs still, with a comprehensive regulatory framework. [49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility. [50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices. [51]

II.     Religious Perspectives on ESC

Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives.

The Qur'an states:

“And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.” [52]

Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception. [53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible. [54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research. [55]

In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided. [56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden. [57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all. [58] Acceptance varies on applied beliefs and interpretations.

Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero, [59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all. [60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime. [61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit. [62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets. [63]

Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life. [64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception: [65]

“If she is found pregnant, until the fortieth day it is mere fluid,” [66]

Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation. [67] Stem cell research is accepted due to application of these religious laws.

We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory , which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions. [68] We only wish to show that the interaction with morality varies between cultures and countries.

III.     A Flexible Ethical Approach

The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities.

While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe. [69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation.

For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent. [70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context, [71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders.  This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research.

Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values. [72]

An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions. [73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion.

IV.     Concerns

Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values. [74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions.

Other concerns include medical tourism, which may promote health inequities. [75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments. [76]

For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.” [77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices. [78]

The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.” [79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds. [80]

While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research.

For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society.

This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model.

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[5] Concerning the moral philosophies of stem cell research, our paper does not posit a personal moral stance nor delve into the “when” of human life begins. To read further about the philosophical debate, consider the following sources:

Sandel M. J. (2004). Embryo ethics--the moral logic of stem-cell research.  The New England journal of medicine ,  351 (3), 207–209. https://doi.org/10.1056/NEJMp048145 ; George, R. P., & Lee, P. (2020, September 26). Acorns and Embryos . The New Atlantis. https://www.thenewatlantis.com/publications/acorns-and-embryos ; Sagan, A., & Singer, P. (2007). The moral status of stem cells. Metaphilosophy , 38 (2/3), 264–284. http://www.jstor.org/stable/24439776 ; McHugh P. R. (2004). Zygote and "clonote"--the ethical use of embryonic stem cells.  The New England journal of medicine ,  351 (3), 209–211. https://doi.org/10.1056/NEJMp048147 ; Kurjak, A., & Tripalo, A. (2004). The facts and doubts about beginning of the human life and personality.  Bosnian journal of basic medical sciences ,  4 (1), 5–14. https://doi.org/10.17305/bjbms.2004.3453

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[7] Socially, at its core, the Western approach to ethics is widely principle-based, autonomy being one of the key factors to ensure a fundamental respect for persons within research. For information regarding autonomy in research, see: Department of Health, Education, and Welfare, & National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978). The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research.; For a more in-depth review of autonomy within the US, see: Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics . Oxford University Press.

[8] Sherley v. Sebelius , 644 F.3d 388 (D.C. Cir. 2011), citing 45 C.F.R. 46.204(b) and [42 U.S.C. § 289g(b)]. https://www.cadc.uscourts.gov/internet/opinions.nsf/6c690438a9b43dd685257a64004ebf99/$file/11-5241-1391178.pdf

[9] Stem Cell Research Enhancement Act of 2005, H. R. 810, 109 th Cong. (2001). https://www.govtrack.us/congress/bills/109/hr810/text ; Bush, G. W. (2006, July 19). Message to the House of Representatives . National Archives and Records Administration. https://georgewbush-whitehouse.archives.gov/news/releases/2006/07/20060719-5.html

[10] National Archives and Records Administration. (2009, March 9). Executive order 13505 -- removing barriers to responsible scientific research involving human stem cells . National Archives and Records Administration. https://obamawhitehouse.archives.gov/the-press-office/removing-barriers-responsible-scientific-research-involving-human-stem-cells

[11] Hurlbut, W. B. (2006). Science, Religion, and the Politics of Stem Cells.  Social Research ,  73 (3), 819–834. http://www.jstor.org/stable/40971854

[12] Akpa-Inyang, Francis & Chima, Sylvester. (2021). South African traditional values and beliefs regarding informed consent and limitations of the principle of respect for autonomy in African communities: a cross-cultural qualitative study. BMC Medical Ethics . 22. 10.1186/s12910-021-00678-4.

[13] Source for further reading: Tangwa G. B. (2007). Moral status of embryonic stem cells: perspective of an African villager. Bioethics , 21(8), 449–457. https://doi.org/10.1111/j.1467-8519.2007.00582.x , see also Mnisi, F. M. (2020). An African analysis based on ethics of Ubuntu - are human embryonic stem cell patents morally justifiable? African Insight , 49 (4).

[14] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics , 22 (2), 112–122. https://doi.org/10.1111/dewb.12324

[15] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324

[16] Jackson, C.S., Pepper, M.S. Opportunities and barriers to establishing a cell therapy programme in South Africa.  Stem Cell Res Ther   4 , 54 (2013). https://doi.org/10.1186/scrt204 ; Pew Research Center. (2014, May 1). Public health a major priority in African nations . Pew Research Center’s Global Attitudes Project. https://www.pewresearch.org/global/2014/05/01/public-health-a-major-priority-in-african-nations/

[17] Department of Health Republic of South Africa. (2021). Health Research Priorities (revised) for South Africa 2021-2024 . National Health Research Strategy. https://www.health.gov.za/wp-content/uploads/2022/05/National-Health-Research-Priorities-2021-2024.pdf

[18] Oosthuizen, H. (2013). Legal and Ethical Issues in Stem Cell Research in South Africa. In: Beran, R. (eds) Legal and Forensic Medicine. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32338-6_80 , see also: Gaobotse G (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[19] United States Bureau of Citizenship and Immigration Services. (1998). Tunisia: Information on the status of Christian conversions in Tunisia . UNHCR Web Archive. https://webarchive.archive.unhcr.org/20230522142618/https://www.refworld.org/docid/3df0be9a2.html

[20] Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[21] Kooli, C. Review of assisted reproduction techniques, laws, and regulations in Muslim countries.  Middle East Fertil Soc J   24 , 8 (2020). https://doi.org/10.1186/s43043-019-0011-0 ; Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[22] Pang M. C. (1999). Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Journal of medical ethics , 25(3), 247–253. https://doi.org/10.1136/jme.25.3.247

[23] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[24] Wang, Y., Xue, Y., & Guo, H. D. (2022). Intervention effects of traditional Chinese medicine on stem cell therapy of myocardial infarction.  Frontiers in pharmacology ,  13 , 1013740. https://doi.org/10.3389/fphar.2022.1013740

[25] Li, X.-T., & Zhao, J. (2012). Chapter 4: An Approach to the Nature of Qi in TCM- Qi and Bioenergy. In Recent Advances in Theories and Practice of Chinese Medicine (p. 79). InTech.

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[27] Luo, D., Xu, Z., Wang, Z., & Ran, W. (2021). China's Stem Cell Research and Knowledge Levels of Medical Practitioners and Students.  Stem cells international ,  2021 , 6667743. https://doi.org/10.1155/2021/6667743

[28] Zhang, J. Y. (2017). Lost in translation? accountability and governance of Clinical Stem Cell Research in China. Regenerative Medicine , 12 (6), 647–656. https://doi.org/10.2217/rme-2017-0035

[29] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[30] Chen, H., Wei, T., Wang, H.  et al.  Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017.  BMC Public Health   22 , 434 (2022). https://doi.org/10.1186/s12889-022-12839-0

[31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan.  Curr Stem Cell Rep   1 , 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6

[32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production . NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production

[33] Park, S. (2012). South Korea steps up stem-cell work.  Nature . https://doi.org/10.1038/nature.2012.10565

[34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned.  Accountability in research ,  13 (1), 101–109. https://doi.org/10.1080/08989620600634193 .

[35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

[36] Association for the Advancement of Blood and Biotherapies.  https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia

[37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia.  BMC medical ethics ,  21 (1), 35. https://doi.org/10.1186/s12910-020-00482-6

[38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics , 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics , 23 (3), 260–268. https://doi.org/10.1111/dewb.12355 ; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know . Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know

[39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France.  Biotechnology Law Report ,  32 (6), 349–356. https://doi.org/10.1089/blr.2013.9865

[45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf

[47] Regulation of Stem Cell Research in Germany . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany

[48] Regulation of Stem Cell Research in Finland . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland

[49] Regulation of Stem Cell Research in Spain . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain

[50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered:

Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110.

Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ...  Revista do Colegio Brasileiro de Cirurgioes ,  41 (5), 374–377. https://doi.org/10.1590/0100-69912014005013

Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India . Routledge.

For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe   

[51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights.  Cultura (Iasi, Romania) ,  14 (2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent?  Research Ethics ,  13 (1), 23-41.  https://doi.org/10.1177/1747016116650235

[52] The Qur'an  (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23

[53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life . Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/

[54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics , 31: 399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386

[55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association , 12 (4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf.

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[57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation.  Journal of Religion and Health ,  30 (1), 35–41. http://www.jstor.org/stable/27510629 ; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva . A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm

[59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. (( King James Bible . (1999). Oxford University Press. (original work published 1769))

Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…”

In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David.

Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…”

These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth.

[60] It should be noted that abortion is not supported as well.

[61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day . Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html

[62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells . Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html ; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology . Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf.

[63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed . Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/

[64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society , (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law).  Journal of assisted reproduction and genetics ,  25 (6), 271–276. https://doi.org/10.1007/s10815-008-9221-6

[66] Ruttenberg, D. (2020, May 5). The Torah of Abortion Justice (annotated source sheet) . Sefaria. https://www.sefaria.org/sheets/234926.7?lang=bi&with=all&lang2=en

[67] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[68] Gert, B. (2007). Common morality: Deciding what to do . Oxford Univ. Press.

[69] World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA , 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 Declaration of Helsinki – WMA – The World Medical Association .; see also: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979).  The Belmont report: Ethical principles and guidelines for the protection of human subjects of research . U.S. Department of Health and Human Services.  https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

[70] Zakarin Safier, L., Gumer, A., Kline, M., Egli, D., & Sauer, M. V. (2018). Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes.  Journal of assisted reproduction and genetics ,  35 (7), 1219–1225. https://doi.org/10.1007/s10815-018-1171-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063839/ see also: Riordan, N. H., & Paz Rodríguez, J. (2021). Addressing concerns regarding associated costs, transparency, and integrity of research in recent stem cell trial. Stem Cells Translational Medicine , 10 (12), 1715–1716. https://doi.org/10.1002/sctm.21-0234

[71] Klitzman, R., & Sauer, M. V. (2009). Payment of egg donors in stem cell research in the USA.  Reproductive biomedicine online ,  18 (5), 603–608. https://doi.org/10.1016/s1472-6483(10)60002-8

[72] Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, M. L. (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa.  Clinical trials (London, England) ,  3 (3), 306–313. https://doi.org/10.1191/1740774506cn150oa

[73] Veatch, Robert M.  Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict . Georgetown University Press, 2012.

[74] Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity.  Research Ethics ,  14 (3), 1-17.  https://doi.org/10.1177/1747016117739939

[75] Pirzada, N. (2022). The Expansion of Turkey’s Medical Tourism Industry.  Voices in Bioethics ,  8 . https://doi.org/10.52214/vib.v8i.9894

[76] Stem Cell Tourism: False Hope for Real Money . Harvard Stem Cell Institute (HSCI). (2023). https://hsci.harvard.edu/stem-cell-tourism , See also: Bissassar, M. (2017). Transnational Stem Cell Tourism: An ethical analysis.  Voices in Bioethics ,  3 . https://doi.org/10.7916/vib.v3i.6027

[77] Song, P. (2011) The proliferation of stem cell therapies in post-Mao China: problematizing ethical regulation,  New Genetics and Society , 30:2, 141-153, DOI:  10.1080/14636778.2011.574375

[78] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[79] International Society for Stem Cell Research. (2024). Standards in stem cell research . International Society for Stem Cell Research. https://www.isscr.org/guidelines/5-standards-in-stem-cell-research

[80] Benjamin, R. (2013). People’s science bodies and rights on the Stem Cell Frontier . Stanford University Press.

Olivia Bowers

MS Bioethics Columbia University (Disclosure: affiliated with Voices in Bioethics)

Mifrah Hayath

SM Candidate Harvard Medical School, MS Biotechnology Johns Hopkins University

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Erin Sigmund joined the Mandel School in May 2024 as the Director of Online Education. Erin brings a wealth of experience in online education and program management to her role. Prior to joining the Mandel School, Erin excelled in various key positions, demonstrating her expertise in online program management, academic advising, program development, and student and faculty support. 

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Houston’s flood problems offer lessons for cities trying to adapt to a changing climate

Professor Emeritus of Climate and Space Sciences and Engineering, University of Michigan

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Scenes from the Houston area looked like the aftermath of a hurricane in early May after a series of powerful storms flooded highways and neighborhoods and sent rivers over their banks north of the city.

Hundreds of people had to be rescued from homes, rooftops and cars, according to The Associated Press. Huntsville registered nearly 20 inches of rain from April 29 to May 4, 2024.

Floods are complex events, and they are about more than just heavy rain. Each community has its own unique geography and climate that can exacerbate flooding. On top of those risks, extreme downpours are becoming more common as global temperatures rise.

I work with a center at the University of Michigan that helps communities turn climate knowledge into projects that can reduce the harm of future climate disasters. Flooding events like the Houston area experienced provide case studies that can help cities everywhere manage the increasing risk.

Flood risks are rising

The first thing recent floods tell us is that the climate is changing.

In the past, it might have made sense to consider a flood a rare and random event – communities could just build back. But the statistical distribution of weather events and natural disasters is shifting.

What might have been a 1-in-500-years event may become a 1-in-100-years event , on the way to becoming a 1-in-50-years event. When Hurricane Harvey hit Texas in 2017, it delivered Houston’s third 500-year flood in the span of three years.

Basic physics points to the rising risks: Global greenhouse gas emissions are increasing global average temperatures. Warming leads to increasing precipitation and more intense downpours, and increased flood potential, particularly when storms hit on already saturated ground.

Communities aren’t prepared

Recent floods are also revealing vulnerabilities in how communities are designed and managed.

Pavement is a major contributor to urban flooding, because water cannot be absorbed and it runs off quickly. The Houston area’s frequent flooding illustrates the risks. Its impervious surfaces expanded by 386 square miles between 1997 and 2017, according to data collected by Rice University . More streets, parking lots and buildings meant more standing water with fewer places for rainwater to sink in.

If the infrastructure is well designed and maintained, flood damage can be greatly reduced. However, increasingly, researchers have found that the engineering specifications for drainage pipes and other infrastructure are no longer adequate to handle the increasing severity of storms and amounts of precipitation. This can lead to roads being washed out and communities being cut off . Failures in maintaining infrastructure, such as levees and storm drains, are a common contributor to flooding.

In the Houston area, reservoirs are also an essential part of flood management, and many were at capacity from persistent rain. This forced managers to release more water when the storms hit.

For a coastal metropolis such as the Houston-Galveston area, rapidly rising sea levels can also reduce the downstream capacity to manage water. These different factors compound to increase flooding risk and highlight the need to not only move water but to find safe places to store it.

The increasing risks affect not only engineering standards, but zoning laws that govern where homes can be built and building codes that describe minimum standards for safety, as well as permitting and environmental regulations.

By addressing these issues now, communities can anticipate and avoid damage rather than only reacting when it’s too late.

Four lessons from case studies

The many effects associated with flooding show why a holistic approach to planning for climate change is necessary, and what communities can learn from one another. For example, case studies show that:

Floods can damage resources that are essential in flood recovery, such as roads, bridges and hospitals . Considering future risks when determining where and how to build these resources enhances the ability to recover from future disasters . Jackson, Mississippi’s water treatment plant was knocked offline by flooding in 2022, leaving people without safe running water. Houston’s Texas Medical Center famously prepared to manage future flooding by installing floodgates, elevating backup generators and taking other steps after heavy damage during Tropical Storm Allison in 2001.

Flood damage does not occur in isolation. Downpours can trigger mudslides , make sewers more vulnerable and turn manufacturing facilities into toxic contamination risks . These can become broad-scale dangers, extending far beyond individual communities.

It is difficult for an individual or a community to take on even the technical aspects of flood preparation alone – there is too much interconnectedness. Protective measures like levees or channels might protect one neighborhood but worsen the flood risk downstream . Planners should identify the appropriate regional scale, such as the entire drainage basin of a creek or river, and form important relationships early in the planning process.

Natural disasters and the ways communities respond to them can also amplify disparities in wealth and resources. Social justice and ethical considerations need to be brought into planning at the beginning.

Learning to manage complexity

In communities that my colleagues and I have worked with , we have found an increasing awareness of the challenges of climate change and rising flood risks.

In most cases, local officials’ initial instinct has been to protect property and persist without changing where people live. However, that might only buy time for some areas before people will have little option but to move .

When they examine their vulnerabilities, many of these communities have started to recognize the interconnectedness of zoning, storm drains and parks that can absorb runoff, for example. They also begin to see the importance of engaging regional stakeholders to avoid fragmented efforts to adapt that could worsen conditions for neighboring areas.

This is an updated version of an article originally published Aug. 25, 2022 .

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Jury in Federal Lawsuit Deadlocks on Abu Ghraib Torture Allegations

Three Iraqi men sued a Virginia contractor that supplied interrogators to the U.S. military after the 2003 invasion of Iraq.

By Mattathias Schwartz

A federal jury in Virginia said on Thursday that it was unable to reach a verdict in a lawsuit filed by three Iraqi men who said they were tortured while being held by the United States at the notorious Abu Ghraib prison two decades ago.

The jurors had deliberated for almost eight days, and with the panel still deadlocked the judge in the case, Leonie M. Brinkema of the U.S. District Court in Alexandria, declared a mistrial on Thursday.

The three plaintiffs had sued a defense contractor, CACI Premier Technology, asserting that CACI employees working as interrogators at the prison directed U.S. military guards to abuse the men in an effort to “soften” them up.

The testimony of the three men last month was the first time a civilian jury had heard allegations of post-9/11 abuses directly from detainees.

In a handwritten note to the judge on Thursday, the jury foreman wrote that the jury could not reach a unanimous verdict, largely because of differing interpretations of the evidence and of a legal defense known as the “borrowed servant” doctrine, where CACI could avoid liability by proving that its employees were under government control.

The mistrial means that the lawsuit, filed in 2008, can continue, if the plaintiffs seek another trial and the court agrees.

The plaintiffs were represented by the Center for Constitutional Rights, a human rights organization, and Patterson Belknap Webb & Tyler, a law firm in New York.

Baher Azmy, a lawyer at the Center for Constitutional Rights, said the plaintiffs’ legal team would “pursue our right to a retrial.”

J. William Koegel Jr., CACI’s general counsel, did not respond to a request for comment.

In 2013, another contractor that had employees at Abu Ghraib settled a similar case by agreeing to pay $5 million.

For more than a decade, CACI sought to have the case against it dismissed, filing a host of motions and appeals challenging the viability of the plaintiffs’ claims. In particular, CACI sought immunity from claims filed under the Alien Tort Statute, which permits foreign citizens to seek damages in federal court for violations of international law.

In 2013 and again in 2021, the U.S. Supreme Court limited the statute’s scope, requiring that the conduct at issue be closely tied to the United States. CACI invoked those decisions to argue that the three Iraqi men’s lawsuit should be thrown out, but Judge Brinkema ruled that the case could proceed.

During five days of testimony, the jury heard the three plaintiffs, now middle age, describe their treatment in U.S. custody at Abu Ghraib.

One plaintiff, Salah Al-Ejaili, said he was shackled naked in a painful stress position, kept that way overnight and ordered to wipe up his own vomit the next morning. Asa’ad Al-Zuba’e said he was forced to crawl on his stomach down a hallway with a bag over his head, until his legs bled. Suhail Al Shimari said he was threatened with rape and death.

“I had no control over what was happening to me, or what would happen to me,” Mr. Al-Ejaili said.

The jury also heard testimony from two retired Army generals who had investigated Abu Ghraib. A report by one of them, Gen. Antonio Taguba, found that one of CACI’s civilian interrogators “made a false statement” and “clearly knew his instructions equated to physical abuse” that was carried out by U.S. military police.

The trial in the lawsuit came 20 years after the abuse at Abu Ghraib was exposed, with the publication of photos taken by Abu Ghraib guards showing military police pulling a detainee by a leash, posing beside a pyramid of naked detainees and giving a thumbs-up sign beside an ice-packed corpse.

The photos were followed by revelations that senior Bush administration officials had authorized brutal “enhanced interrogation techniques” after the terror attacks of Sept. 11, 2001. But the military characterized the Abu Ghraib abuses as the misconduct of a few bad apples. Fewer than a dozen enlisted soldiers were convicted in courts-martial and sentenced to military prison.

“Everyone knew it was wrong,” said Charles A. Graner, one of the convicted soldiers who was often described as the “ringleader” of the troops committing abuses at the time. “And no one was willing to step up and stop it.”

The defendant, a subsidiary of CACI International, based in Virginia, has denied wrongdoing. None of the most damning images from Abu Ghraib show CACI contractors engaging in misconduct.

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Case Study – The Ethics of Blood Shortages

February 2022

Bioethics case study on blood shortages and scarce resource allocation.

A 75-year-old, female identifying patient is admitted to the ICU for abdominal distress. Her name is Graciela.

Graciela’s family members tell hospital staff that she has not been feeling “herself” as of late. She’s been drowsy, visibly jaundiced, and in a constant state of pain. One morning, her sons found her hunched over and gasping for breath. They immediately called 911.

After a series of tests, Graciela’s medical team determines that she is showing signs of seemingly irreversible multi-system organ failure with one or more probable causes, but none of them curable given the current state of medical knowledge and treatments. Her hemoglobin is notably low, requiring transfusions to make the patient feel better, but without any hemorrhaging site noted. With proper care, inclusive of additional blood transfusions, Graciela’s prognosis is estimated to be a life expectancy of 3 to 6 months.

An attending physician informs Graciela and her family about what has been learned, what her care team knows, what they still don’t know, and what is anticipated as a likely outcome. Understandably, both patient and family are distraught by this bad news. While consoling his mother, Graciela’s son Roberto asks her doctor if there isn’t some thing that might be done to help his mother. He insists that she wants to be healed and return to her previous happy existence as a doting grandmother and gardener. If neither doctors nor God produces the miracle all are praying for, Graciela wishes to be kept as comfortable and pain-free as possible, at home and surrounded by family. Graciela nods her agreement to what the son has stated.

Given these stated goals of care, the primary team requests a palliative care consult. After evaluating the patient, Palliative recommends various comfort measures including pain medications and routine blood transfusions as needed. Their chart note indicates hope that by following this course of palliative care, the patient might remain alert and comfortable for the remaining months of her life.

The attending physician, although in agreement with palliative recommendations, is worried about the proposal to continue transfusing his terminally ill patient. A national blood shortage significantly impacts not only this health system but all others and their patients. An executive memo to physicians in this hospital recently called upon everyone to utilize blood products judiciously and conservatively on account of a critical shortage everywhere.

But what would “judicious” use of blood mean in Graciela’s situation? Indeed, there is a 22-year-old patient in the hospital named Julian who also needs routine blood transfusions (in combination with other therapies) for sickle cell anemia. He is otherwise not dying, or not anytime soon, if given access to sufficient resources of donated blood. Then too there are the multiple trauma victims arriving at the Emergency Room daily in this busy urban hospital. What happens to those hemorrhaging patients if we run out of blood for having used up our supply on dying patients like Graciela?

Graciela’s care team, discussing this dilemma, feels morally distressed. If these were normal times with blood products well stocked, then all patients who stand to benefit from transfusions—Graciela, Julian and those in trauma bays—could be treated equally and equitably without allocation concerns. However, when blood is a scarce resource, when there are patients who need the resource for long-term survival and not mostly for palliation, what then should be done? On the other hand, excellent palliative care at the end of life is also significant. There is value to helping someone live out the remaining months of their lives with optimal quality of life. This seems a worthy goal, even if the anticipated outcome is not long-term survival.

What should be done? Graciela’s attending physician requests an ethics consultation.

Will Trump Testify At Hush Money Trial? Here’s Why Some Lawyers Think It’s Unlikely.

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Former President Donald Trump’s lawyers are expected to start presenting their defense in his criminal trial next week after prosecutors rest their case, but it still remains to be seen whether the ex-president will take the stand and testify himself—though Trump has wavered on the issue, and legal experts largely believe it would be an unwise move.

Former President Donald Trump returns to the courtroom after a short break during his hush money ... [+] trial on May 14 in New York City.

The defense is expected to start presenting its case next week, after prosecutors said Tuesday that ex-Trump attorney Michael Cohen , who will take the stand for a third day on Thursday, will be their final witness.

Trump’s attorneys aren’t expected to call many witnesses—if any—with attorney Todd Blanche telling the judge Tuesday they have one expert witness they may call, but that’s the only one they have set as of now.

Blanche said Tuesday it’s still unclear if Trump will testify, answering “no” when Judge Juan Merchan asked if the attorney had any “indication” of whether Trump would testify or if any “determination” had been made on the issue.

Trump publicly committed to testifying when the trial first got underway, telling reporters, “All I can do is tell the truth. And the truth is that there’s no case” just before the trial began.

Trump became more noncommittal in an April 26 interview with Newsmax, where he said only that he would testify “if it’s necessary”—and the ex-president has not committed to testifying since, though he did falsely claim a gag order against him barred him from taking the stand, which Merchan swiftly clarified was not the case.

Trump spokesperson Steven Cheung has not yet responded to a request for comment.

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It’s common for defendants not to testify in criminal trials, with many defense attorneys believing the risk of a defendant harming their own case outweighs the benefits. When the trial began last month, Merchan reminded jurors Trump has a right not to testify, and if he chooses not to take the witness stand, they can’t hold it against him.

Should Trump Testify?

While it’s still up in the air whether Trump will testify, legal experts suggest doing so would hurt the ex-president’s case. “It would be suicide for” Trump to testify, left-leaning attorney Norm Eisen said on CNN Tuesday, arguing there’s “no way” his lawyers would allow him to take the stand. Trump’s former attorney Tim Parlatore said the same on CNN Tuesday, telling Kaitlan Collins that he “personally would suggest that he probably should not” testify. Both Eisen and Parlatore suggested doing so would hurt Trump’s case, with Parlatore arguing it would “significantly increase” Trump’s chances of conviction because “if the jury disbelieves him on anything, however small, that’s something they’re gonna hold against him and be much more likely to convict.” If Trump is convicted, Eisen suggested taking the stand could also lead to a more severe punishment, arguing that if Merchan believes Trump may have lied under oath, “it virtually ensures a sentence of incarceration.” While legal experts suggest Trump’s lawyers are near certain to prefer their client stay off the stand, however, they also note the ex-president has a history of not listening to his attorneys.

What To Watch For

Any decision on whether Trump will take the stand is likely to be made at the last minute, legal experts have noted, with Parlatore saying the decision will be made “down to the wire” based on whether it’s “worth taking the risk,” and former federal prosecutor Joyce Vance noting in April it’s “unlikely” Trump’s lawyers will decide “until the moment is close at hand.” If Trump’s lawyers don’t take very long to present their defense—whether or not Trump testifies—it’s possible the case could go to the jury as soon as next week. The prosecution is likely to rest its case Thursday or on Monday—the court will be off on Friday for Trump’s son Barron Trump’s graduation—depending on how long Cohen’s testimony runs.

Surprising Fact

While this case marks Trump’s first criminal trial, the ex-president has recently taken the stand at several of his recent civil trials, testifying about defamation allegations brought against him by writer E. Jean Carroll and the fraud allegations brought against him and his company. Neither testimony appeared to help his case, as he was found liable in both cases and ordered to pay $88.3 million and $454.2 million, respectively. In his order finding Trump and his co-defendants liable in the fraud case , Judge Arthur Engoron argued Trump “severely compromised his credibility” when testifying, noting the ex-president “rarely responded to the questions asked, and he frequently interjected long, irrelevant speeches on issues far beyond the scope of the trial.”

Key Background

Trump faces 34 felony charges of falsifying business records in his Manhattan trial, which is one of four criminal cases that’s been brought against the ex-president. The charges stem from a $130,000 payment Cohen made to adult film star Stormy Daniels in the days before the 2016 election in order to cover up her allegations of having an affair with Trump. Trump then allegedly reimbursed Cohen for the payment—paying him $420,000 after adding in other expenses and enough money to cover taxes—which were paid through a series of reimbursement checks throughout 2017. Prosecutors allege those reimbursements were handled through the Trump Organization and falsely labeled as being for legal services, which Trump has denied, as his lawyers have claimed the payments were correctly labeled and tried to distance Trump from the reimbursement scheme. Trump has pleaded not guilty to the charges against him—as well as in his other three cases—decrying the case as a politically motivated “witch hunt” designed to hurt his campaign. The trial, which has been ongoing since mid-April, has included multiple witnesses tying Trump to the hush money scheme, with Cohen directly testifying that Trump approved the Daniels payment and was involved with the reimbursement scheme. As the criminal defendant, Trump has been required to be present in the courtroom every day of the trial—though media reports suggest he has regularly dozed off during the proceedings.

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