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

Case Studies in Society, Religion, and Bioethics

• © 2020
• Sana Loue 0

School of Medicine, Department of Bioethics, Case Western Reserve University, Cleveland, USA

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• Integrates existing literature and perspectives from multiple disciplines, e.g., bioethics, medicine, sociology, theology
• Offers a cross-cultural and comparative focus (across religions, countries, time periods)
• Uses a case-study approach

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Table of contents (10 chapters)

Front matter, society, religion, and bioethics, homosexuality: sin, crime, pathology, identity, behavior*, body modification of minors*.

• Medical Error: Truthtelling, Apology, and Forgiveness

Religious Refusal of Medical Treatment*

Care of the stranger: medical deportation of noncitizens, nazism, religion, and human experimentation, animal experimentation in biomedical science.

• The New Frontier: Cloning

Concluding Remarks

Back matter.

• human experimentation
• animal experimentation
• African American health
• regenerative medicine
• reproductive health
• contraception
• stem cell research
• blood transfusion
• physician-assisted suicide
• history of medicine
• health ethics
• organ donation
• transplantation
• end-of-life issues

About this book

This book explores, through case studies, the interplay between religion, culture, government, and politics in diverse societies on questions arising in the domain of bioethics. The case studies draw from multiple disciplinary perspectives, including history, theology, law, bioethics, public policy, science, and medicine. The text's global perspective permits a comparison of the differing approaches adopted by countries facing similar bioethical quandaries and the extent to which religion has or has not been instrumental in addressing such dilemmas.

Topics explored among the chapters include:

• Homosexuality: Sin, Crime, Pathology, Identity, Behavior
• Refusal of Medical Treatment
• Medical Deportation
• Case Study: Nazism, Religion, and Human Experimentation

Case Studies in Society, Religion, and Bioethics  will find an engaged audience among researchers and scholars in history, religion/theology, medicine, and bioethics interested in the influence of religion on bioethical decision-making. Students—particularly upper-level undergraduate and graduate students interested in bioethics, humanities, and theology—will find the text helpful in understanding the processes through which religion may serve as a basis for both societal policy and law and individual decision-making in health-related matters.

Authors and Affiliations

About the author, bibliographic information.

Book Title : Case Studies in Society, Religion, and Bioethics

Authors : Sana Loue

DOI : https://doi.org/10.1007/978-3-030-44150-0

Publisher : Springer Cham

eBook Packages : Medicine , Medicine (R0)

Copyright Information : Springer Nature Switzerland AG 2020

Hardcover ISBN : 978-3-030-44149-4 Published: 30 June 2020

Softcover ISBN : 978-3-030-44152-4 Published: 30 June 2021

eBook ISBN : 978-3-030-44150-0 Published: 29 June 2020

Edition Number : 1

Number of Pages : XVIII, 268

Number of Illustrations : 1 b/w illustrations, 3 illustrations in colour

Topics : Nursing Ethics , Sociology of Religion , History of Medicine

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Case Studies

The following are helpful for introducing real-life ethics situations to students. These case studies are designed for teaching purposes, to help students develop critical responses to ethical issues, taking into account a multitude of viewpoints. Please feel free to use these case studies in your classrooms, or modify as necessary for your purposes. Please give credit where credit is due.

If you would like to contribute your own case studies, or significant revisions to posted cases, please contact the Bioethics Program at [email protected] The following categories are not mutually exclusive. Case Studies may have more than one area of relevance.

RESOURCES FOR TEACHING CASE STUDIES

• Constructing Case Studies
• Three Case Studies Handout
• Evaluation Handout

The following is a creative component, published with permission, of a Master of Science in Bioethics program graduate.

• A Case Study Method for Teaching Bioethics

NATURAL RESOURCE/ENVIRONMENTAL CASE STUDIES

Agriculture & biotechnology case studies, animal case studies, medical & biotechnology case studies.

*previous case study on stem cell research may still be accessed from: http://www.bioethics.iastate.edu/classroom/stemcells.html

ECONOMIC & SOCIAL CASE STUDIES

Topics and resources for case studies.

• Hybrid Corn Herbicide Resistant Rice
• Four Case Studies , vegetarianism, farm animal production, and hunting
• Don’t Goose Me!
• Marine Mammal Protection and Management
• Reintroduction of the Gray Wolf into Yellowstone
• Responding to the Risks Presented by the Presence of Bovine Tuberculosis in Wild Deer
• Cases on animal rights/animal welfare developed by Gary Varner, Texas A&M University
• Two Case Studies , egg machines and pigs with human genes
• Whose Summer Home is It? , ecological preservation
• Mars Exploration , risk to potential life on another planet
• Case Studies in Organ Transplantation , using human cells and animal organs
• Edible Vaccines , ethical issues surrounding vaccines in food
• Trait Protection , intellectual property of genetic traits
• Lost in the Maize , communicating about GM vs. non-GM with neighbors
• The Neighbors , a case study about neighbors communicating about planting organic and GMO crops
• Marine Mammal Protection and Management , issues surrounding environmental and animal rights issues
• Pfiestria Piscicida , fish kills
• Pfiestria Hysteria , a second look at fish kills
• Deliberate Extinction? , eliminating the last vials of the eradicated smallpox virus
• Orphan Embryos , using surplus embryos for stem cell research
• Whose Property Are They? , unused embryos and research
• Rare Plants , protecting natural traits of endangered plants
• Pitcher Plants , protecting an endangered species
• Valley of Sorrow , breaking confidentiality to save lives
• Plagiarism , writing and illegal/unethical use of others’ words
• Publish or Perish , collaboration and printing research articles
• Feral Cats , ethics associated with trapping and neutering feral cats
• Euthanasia in Veterinary Medicine
• El Maizal MG , el comunicarse sobre organismos gentico modificados con sus vecinos (traducido a espaol)
• Extino Deliberada? , eliminando os ltimos vials do vrus do smallpox (verso portuguese original)
• Tres Casos para la Discusion (traducido a espaol)
• Tres Casos para Discusso (traduzido no portugues)

• Open access
• Published: 18 April 2024

Research ethics and artificial intelligence for global health: perspectives from the global forum on bioethics in research

• James Shaw 1 , 13 ,
• Joseph Ali 2 , 3 ,
• Caesar A. Atuire 4 , 5 ,
• Phaik Yeong Cheah 6 ,
• Armando Guio Español 7 ,
• Judy Wawira Gichoya 8 ,
• Adrienne Hunt 9 ,
• Daudi Jjingo 10 ,
• Katherine Littler 9 ,
• Daniela Paolotti 11 &
• Effy Vayena 12  

BMC Medical Ethics volume  25 , Article number:  46 ( 2024 ) Cite this article

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The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022.

The GFBR is an annual meeting organized by the World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC. The forum aims to bring together ethicists, researchers, policymakers, research ethics committee members and other actors to engage with challenges and opportunities specifically related to research ethics. In 2022 the focus of the GFBR was “Ethics of AI in Global Health Research”. The forum consisted of 6 case study presentations, 16 governance presentations, and a series of small group and large group discussions. A total of 87 participants attended the forum from 31 countries around the world, representing disciplines of bioethics, AI, health policy, health professional practice, research funding, and bioinformatics. In this paper, we highlight central insights arising from GFBR 2022.

We describe the significance of four thematic insights arising from the forum: (1) Appropriateness of building AI, (2) Transferability of AI systems, (3) Accountability for AI decision-making and outcomes, and (4) Individual consent. We then describe eight recommendations for governance leaders to enhance the ethical governance of AI in global health research, addressing issues such as AI impact assessments, environmental values, and fair partnerships.

Conclusions

The 2022 Global Forum on Bioethics in Research illustrated several innovations in ethical governance of AI for global health research, as well as several areas in need of urgent attention internationally. This summary is intended to inform international and domestic efforts to strengthen research ethics and support the evolution of governance leadership to meet the demands of AI in global health research.

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Introduction

The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice [ 1 , 2 , 3 ]. Beyond the growing number of AI applications being implemented in health care, capabilities of AI models such as Large Language Models (LLMs) expand the potential reach and significance of AI technologies across health-related fields [ 4 , 5 ]. Discussion about effective, ethical governance of AI technologies has spanned a range of governance approaches, including government regulation, organizational decision-making, professional self-regulation, and research ethics review [ 6 , 7 , 8 ]. In this paper, we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health research, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. Although applications of AI for research, health care, and public health are diverse and advancing rapidly, the insights generated at the forum remain highly relevant from a global health perspective. After summarizing important context for work in this domain, we highlight categories of ethical issues emphasized at the forum for attention from a research ethics perspective internationally. We then outline strategies proposed for research, innovation, and governance to support more ethical AI for global health.

In this paper, we adopt the definition of AI systems provided by the Organization for Economic Cooperation and Development (OECD) as our starting point. Their definition states that an AI system is “a machine-based system that can, for a given set of human-defined objectives, make predictions, recommendations, or decisions influencing real or virtual environments. AI systems are designed to operate with varying levels of autonomy” [ 9 ]. The conceptualization of an algorithm as helping to constitute an AI system, along with hardware, other elements of software, and a particular context of use, illustrates the wide variety of ways in which AI can be applied. We have found it useful to differentiate applications of AI in research as those classified as “AI systems for discovery” and “AI systems for intervention”. An AI system for discovery is one that is intended to generate new knowledge, for example in drug discovery or public health research in which researchers are seeking potential targets for intervention, innovation, or further research. An AI system for intervention is one that directly contributes to enacting an intervention in a particular context, for example informing decision-making at the point of care or assisting with accuracy in a surgical procedure.

The mandate of the GFBR is to take a broad view of what constitutes research and its regulation in global health, with special attention to bioethics in Low- and Middle- Income Countries. AI as a group of technologies demands such a broad view. AI development for health occurs in a variety of environments, including universities and academic health sciences centers where research ethics review remains an important element of the governance of science and innovation internationally [ 10 , 11 ]. In these settings, research ethics committees (RECs; also known by different names such as Institutional Review Boards or IRBs) make decisions about the ethical appropriateness of projects proposed by researchers and other institutional members, ultimately determining whether a given project is allowed to proceed on ethical grounds [ 12 ].

However, research involving AI for health also takes place in large corporations and smaller scale start-ups, which in some jurisdictions fall outside the scope of research ethics regulation. In the domain of AI, the question of what constitutes research also becomes blurred. For example, is the development of an algorithm itself considered a part of the research process? Or only when that algorithm is tested under the formal constraints of a systematic research methodology? In this paper we take an inclusive view, in which AI development is included in the definition of research activity and within scope for our inquiry, regardless of the setting in which it takes place. This broad perspective characterizes the approach to “research ethics” we take in this paper, extending beyond the work of RECs to include the ethical analysis of the wide range of activities that constitute research as the generation of new knowledge and intervention in the world.

Ethical governance of AI in global health

The ethical governance of AI for global health has been widely discussed in recent years. The World Health Organization (WHO) released its guidelines on ethics and governance of AI for health in 2021, endorsing a set of six ethical principles and exploring the relevance of those principles through a variety of use cases. The WHO guidelines also provided an overview of AI governance, defining governance as covering “a range of steering and rule-making functions of governments and other decision-makers, including international health agencies, for the achievement of national health policy objectives conducive to universal health coverage.” (p. 81) The report usefully provided a series of recommendations related to governance of seven domains pertaining to AI for health: data, benefit sharing, the private sector, the public sector, regulation, policy observatories/model legislation, and global governance. The report acknowledges that much work is yet to be done to advance international cooperation on AI governance, especially related to prioritizing voices from Low- and Middle-Income Countries (LMICs) in global dialogue.

One important point emphasized in the WHO report that reinforces the broader literature on global governance of AI is the distribution of responsibility across a wide range of actors in the AI ecosystem. This is especially important to highlight when focused on research for global health, which is specifically about work that transcends national borders. Alami et al. (2020) discussed the unique risks raised by AI research in global health, ranging from the unavailability of data in many LMICs required to train locally relevant AI models to the capacity of health systems to absorb new AI technologies that demand the use of resources from elsewhere in the system. These observations illustrate the need to identify the unique issues posed by AI research for global health specifically, and the strategies that can be employed by all those implicated in AI governance to promote ethically responsible use of AI in global health research.

RECs and the regulation of research involving AI

RECs represent an important element of the governance of AI for global health research, and thus warrant further commentary as background to our paper. Despite the importance of RECs, foundational questions have been raised about their capabilities to accurately understand and address ethical issues raised by studies involving AI. Rahimzadeh et al. (2023) outlined how RECs in the United States are under-prepared to align with recent federal policy requiring that RECs review data sharing and management plans with attention to the unique ethical issues raised in AI research for health [ 13 ]. Similar research in South Africa identified variability in understanding of existing regulations and ethical issues associated with health-related big data sharing and management among research ethics committee members [ 14 , 15 ]. The effort to address harms accruing to groups or communities as opposed to individuals whose data are included in AI research has also been identified as a unique challenge for RECs [ 16 , 17 ]. Doerr and Meeder (2022) suggested that current regulatory frameworks for research ethics might actually prevent RECs from adequately addressing such issues, as they are deemed out of scope of REC review [ 16 ]. Furthermore, research in the United Kingdom and Canada has suggested that researchers using AI methods for health tend to distinguish between ethical issues and social impact of their research, adopting an overly narrow view of what constitutes ethical issues in their work [ 18 ].

The challenges for RECs in adequately addressing ethical issues in AI research for health care and public health exceed a straightforward survey of ethical considerations. As Ferretti et al. (2021) contend, some capabilities of RECs adequately cover certain issues in AI-based health research, such as the common occurrence of conflicts of interest where researchers who accept funds from commercial technology providers are implicitly incentivized to produce results that align with commercial interests [ 12 ]. However, some features of REC review require reform to adequately meet ethical needs. Ferretti et al. outlined weaknesses of RECs that are longstanding and those that are novel to AI-related projects, proposing a series of directions for development that are regulatory, procedural, and complementary to REC functionality. The work required on a global scale to update the REC function in response to the demands of research involving AI is substantial.

These issues take greater urgency in the context of global health [ 19 ]. Teixeira da Silva (2022) described the global practice of “ethics dumping”, where researchers from high income countries bring ethically contentious practices to RECs in low-income countries as a strategy to gain approval and move projects forward [ 20 ]. Although not yet systematically documented in AI research for health, risk of ethics dumping in AI research is high. Evidence is already emerging of practices of “health data colonialism”, in which AI researchers and developers from large organizations in high-income countries acquire data to build algorithms in LMICs to avoid stricter regulations [ 21 ]. This specific practice is part of a larger collection of practices that characterize health data colonialism, involving the broader exploitation of data and the populations they represent primarily for commercial gain [ 21 , 22 ]. As an additional complication, AI algorithms trained on data from high-income contexts are unlikely to apply in straightforward ways to LMIC settings [ 21 , 23 ]. In the context of global health, there is widespread acknowledgement about the need to not only enhance the knowledge base of REC members about AI-based methods internationally, but to acknowledge the broader shifts required to encourage their capabilities to more fully address these and other ethical issues associated with AI research for health [ 8 ].

Although RECs are an important part of the story of the ethical governance of AI for global health research, they are not the only part. The responsibilities of supra-national entities such as the World Health Organization, national governments, organizational leaders, commercial AI technology providers, health care professionals, and other groups continue to be worked out internationally. In this context of ongoing work, examining issues that demand attention and strategies to address them remains an urgent and valuable task.

The GFBR is an annual meeting organized by the World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC. The forum aims to bring together ethicists, researchers, policymakers, REC members and other actors to engage with challenges and opportunities specifically related to research ethics. Each year the GFBR meeting includes a series of case studies and keynotes presented in plenary format to an audience of approximately 100 people who have applied and been competitively selected to attend, along with small-group breakout discussions to advance thinking on related issues. The specific topic of the forum changes each year, with past topics including ethical issues in research with people living with mental health conditions (2021), genome editing (2019), and biobanking/data sharing (2018). The forum is intended to remain grounded in the practical challenges of engaging in research ethics, with special interest in low resource settings from a global health perspective. A post-meeting fellowship scheme is open to all LMIC participants, providing a unique opportunity to apply for funding to further explore and address the ethical challenges that are identified during the meeting.

In 2022, the focus of the GFBR was “Ethics of AI in Global Health Research”. The forum consisted of 6 case study presentations (both short and long form) reporting on specific initiatives related to research ethics and AI for health, and 16 governance presentations (both short and long form) reporting on actual approaches to governing AI in different country settings. A keynote presentation from Professor Effy Vayena addressed the topic of the broader context for AI ethics in a rapidly evolving field. A total of 87 participants attended the forum from 31 countries around the world, representing disciplines of bioethics, AI, health policy, health professional practice, research funding, and bioinformatics. The 2-day forum addressed a wide range of themes. The conference report provides a detailed overview of each of the specific topics addressed while a policy paper outlines the cross-cutting themes (both documents are available at the GFBR website: https://www.gfbr.global/past-meetings/16th-forum-cape-town-south-africa-29-30-november-2022/ ). As opposed to providing a detailed summary in this paper, we aim to briefly highlight central issues raised, solutions proposed, and the challenges facing the research ethics community in the years to come.

In this way, our primary aim in this paper is to present a synthesis of the challenges and opportunities raised at the GFBR meeting and in the planning process, followed by our reflections as a group of authors on their significance for governance leaders in the coming years. We acknowledge that the views represented at the meeting and in our results are a partial representation of the universe of views on this topic; however, the GFBR leadership invested a great deal of resources in convening a deeply diverse and thoughtful group of researchers and practitioners working on themes of bioethics related to AI for global health including those based in LMICs. We contend that it remains rare to convene such a strong group for an extended time and believe that many of the challenges and opportunities raised demand attention for more ethical futures of AI for health. Nonetheless, our results are primarily descriptive and are thus not explicitly grounded in a normative argument. We make effort in the Discussion section to contextualize our results by describing their significance and connecting them to broader efforts to reform global health research and practice.

Uniquely important ethical issues for AI in global health research

Presentations and group dialogue over the course of the forum raised several issues for consideration, and here we describe four overarching themes for the ethical governance of AI in global health research. Brief descriptions of each issue can be found in Table  1 . Reports referred to throughout the paper are available at the GFBR website provided above.

The first overarching thematic issue relates to the appropriateness of building AI technologies in response to health-related challenges in the first place. Case study presentations referred to initiatives where AI technologies were highly appropriate, such as in ear shape biometric identification to more accurately link electronic health care records to individual patients in Zambia (Alinani Simukanga). Although important ethical issues were raised with respect to privacy, trust, and community engagement in this initiative, the AI-based solution was appropriately matched to the challenge of accurately linking electronic records to specific patient identities. In contrast, forum participants raised questions about the appropriateness of an initiative using AI to improve the quality of handwashing practices in an acute care hospital in India (Niyoshi Shah), which led to gaming the algorithm. Overall, participants acknowledged the dangers of techno-solutionism, in which AI researchers and developers treat AI technologies as the most obvious solutions to problems that in actuality demand much more complex strategies to address [ 24 ]. However, forum participants agreed that RECs in different contexts have differing degrees of power to raise issues of the appropriateness of an AI-based intervention.

The second overarching thematic issue related to whether and how AI-based systems transfer from one national health context to another. One central issue raised by a number of case study presentations related to the challenges of validating an algorithm with data collected in a local environment. For example, one case study presentation described a project that would involve the collection of personally identifiable data for sensitive group identities, such as tribe, clan, or religion, in the jurisdictions involved (South Africa, Nigeria, Tanzania, Uganda and the US; Gakii Masunga). Doing so would enable the team to ensure that those groups were adequately represented in the dataset to ensure the resulting algorithm was not biased against specific community groups when deployed in that context. However, some members of these communities might desire to be represented in the dataset, whereas others might not, illustrating the need to balance autonomy and inclusivity. It was also widely recognized that collecting these data is an immense challenge, particularly when historically oppressive practices have led to a low-trust environment for international organizations and the technologies they produce. It is important to note that in some countries such as South Africa and Rwanda, it is illegal to collect information such as race and tribal identities, re-emphasizing the importance for cultural awareness and avoiding “one size fits all” solutions.

The third overarching thematic issue is related to understanding accountabilities for both the impacts of AI technologies and governance decision-making regarding their use. Where global health research involving AI leads to longer-term harms that might fall outside the usual scope of issues considered by a REC, who is to be held accountable, and how? This question was raised as one that requires much further attention, with law being mixed internationally regarding the mechanisms available to hold researchers, innovators, and their institutions accountable over the longer term. However, it was recognized in breakout group discussion that many jurisdictions are developing strong data protection regimes related specifically to international collaboration for research involving health data. For example, Kenya’s Data Protection Act requires that any internationally funded projects have a local principal investigator who will hold accountability for how data are shared and used [ 25 ]. The issue of research partnerships with commercial entities was raised by many participants in the context of accountability, pointing toward the urgent need for clear principles related to strategies for engagement with commercial technology companies in global health research.

The fourth and final overarching thematic issue raised here is that of consent. The issue of consent was framed by the widely shared recognition that models of individual, explicit consent might not produce a supportive environment for AI innovation that relies on the secondary uses of health-related datasets to build AI algorithms. Given this recognition, approaches such as community oversight of health data uses were suggested as a potential solution. However, the details of implementing such community oversight mechanisms require much further attention, particularly given the unique perspectives on health data in different country settings in global health research. Furthermore, some uses of health data do continue to require consent. One case study of South Africa, Nigeria, Kenya, Ethiopia and Uganda suggested that when health data are shared across borders, individual consent remains necessary when data is transferred from certain countries (Nezerith Cengiz). Broader clarity is necessary to support the ethical governance of health data uses for AI in global health research.

Recommendations for ethical governance of AI in global health research

Dialogue at the forum led to a range of suggestions for promoting ethical conduct of AI research for global health, related to the various roles of actors involved in the governance of AI research broadly defined. The strategies are written for actors we refer to as “governance leaders”, those people distributed throughout the AI for global health research ecosystem who are responsible for ensuring the ethical and socially responsible conduct of global health research involving AI (including researchers themselves). These include RECs, government regulators, health care leaders, health professionals, corporate social accountability officers, and others. Enacting these strategies would bolster the ethical governance of AI for global health more generally, enabling multiple actors to fulfill their roles related to governing research and development activities carried out across multiple organizations, including universities, academic health sciences centers, start-ups, and technology corporations. Specific suggestions are summarized in Table  2 .

First, forum participants suggested that governance leaders including RECs, should remain up to date on recent advances in the regulation of AI for health. Regulation of AI for health advances rapidly and takes on different forms in jurisdictions around the world. RECs play an important role in governance, but only a partial role; it was deemed important for RECs to acknowledge how they fit within a broader governance ecosystem in order to more effectively address the issues within their scope. Not only RECs but organizational leaders responsible for procurement, researchers, and commercial actors should all commit to efforts to remain up to date about the relevant approaches to regulating AI for health care and public health in jurisdictions internationally. In this way, governance can more adequately remain up to date with advances in regulation.

Second, forum participants suggested that governance leaders should focus on ethical governance of health data as a basis for ethical global health AI research. Health data are considered the foundation of AI development, being used to train AI algorithms for various uses [ 26 ]. By focusing on ethical governance of health data generation, sharing, and use, multiple actors will help to build an ethical foundation for AI development among global health researchers.

Third, forum participants believed that governance processes should incorporate AI impact assessments where appropriate. An AI impact assessment is the process of evaluating the potential effects, both positive and negative, of implementing an AI algorithm on individuals, society, and various stakeholders, generally over time frames specified in advance of implementation [ 27 ]. Although not all types of AI research in global health would warrant an AI impact assessment, this is especially relevant for those studies aiming to implement an AI system for intervention into health care or public health. Organizations such as RECs can use AI impact assessments to boost understanding of potential harms at the outset of a research project, encouraging researchers to more deeply consider potential harms in the development of their study.

Fourth, forum participants suggested that governance decisions should incorporate the use of environmental impact assessments, or at least the incorporation of environment values when assessing the potential impact of an AI system. An environmental impact assessment involves evaluating and anticipating the potential environmental effects of a proposed project to inform ethical decision-making that supports sustainability [ 28 ]. Although a relatively new consideration in research ethics conversations [ 29 ], the environmental impact of building technologies is a crucial consideration for the public health commitment to environmental sustainability. Governance leaders can use environmental impact assessments to boost understanding of potential environmental harms linked to AI research projects in global health over both the shorter and longer terms.

Fifth, forum participants suggested that governance leaders should require stronger transparency in the development of AI algorithms in global health research. Transparency was considered essential in the design and development of AI algorithms for global health to ensure ethical and accountable decision-making throughout the process. Furthermore, whether and how researchers have considered the unique contexts into which such algorithms may be deployed can be surfaced through stronger transparency, for example in describing what primary considerations were made at the outset of the project and which stakeholders were consulted along the way. Sharing information about data provenance and methods used in AI development will also enhance the trustworthiness of the AI-based research process.

Sixth, forum participants suggested that governance leaders can encourage or require community engagement at various points throughout an AI project. It was considered that engaging patients and communities is crucial in AI algorithm development to ensure that the technology aligns with community needs and values. However, participants acknowledged that this is not a straightforward process. Effective community engagement requires lengthy commitments to meeting with and hearing from diverse communities in a given setting, and demands a particular set of skills in communication and dialogue that are not possessed by all researchers. Encouraging AI researchers to begin this process early and build long-term partnerships with community members is a promising strategy to deepen community engagement in AI research for global health. One notable recommendation was that research funders have an opportunity to incentivize and enable community engagement with funds dedicated to these activities in AI research in global health.

Seventh, forum participants suggested that governance leaders can encourage researchers to build strong, fair partnerships between institutions and individuals across country settings. In a context of longstanding imbalances in geopolitical and economic power, fair partnerships in global health demand a priori commitments to share benefits related to advances in medical technologies, knowledge, and financial gains. Although enforcement of this point might be beyond the remit of RECs, commentary will encourage researchers to consider stronger, fairer partnerships in global health in the longer term.

Eighth, it became evident that it is necessary to explore new forms of regulatory experimentation given the complexity of regulating a technology of this nature. In addition, the health sector has a series of particularities that make it especially complicated to generate rules that have not been previously tested. Several participants highlighted the desire to promote spaces for experimentation such as regulatory sandboxes or innovation hubs in health. These spaces can have several benefits for addressing issues surrounding the regulation of AI in the health sector, such as: (i) increasing the capacities and knowledge of health authorities about this technology; (ii) identifying the major problems surrounding AI regulation in the health sector; (iii) establishing possibilities for exchange and learning with other authorities; (iv) promoting innovation and entrepreneurship in AI in health; and (vi) identifying the need to regulate AI in this sector and update other existing regulations.

Ninth and finally, forum participants believed that the capabilities of governance leaders need to evolve to better incorporate expertise related to AI in ways that make sense within a given jurisdiction. With respect to RECs, for example, it might not make sense for every REC to recruit a member with expertise in AI methods. Rather, it will make more sense in some jurisdictions to consult with members of the scientific community with expertise in AI when research protocols are submitted that demand such expertise. Furthermore, RECs and other approaches to research governance in jurisdictions around the world will need to evolve in order to adopt the suggestions outlined above, developing processes that apply specifically to the ethical governance of research using AI methods in global health.

Research involving the development and implementation of AI technologies continues to grow in global health, posing important challenges for ethical governance of AI in global health research around the world. In this paper we have summarized insights from the 2022 GFBR, focused specifically on issues in research ethics related to AI for global health research. We summarized four thematic challenges for governance related to AI in global health research and nine suggestions arising from presentations and dialogue at the forum. In this brief discussion section, we present an overarching observation about power imbalances that frames efforts to evolve the role of governance in global health research, and then outline two important opportunity areas as the field develops to meet the challenges of AI in global health research.

Dialogue about power is not unfamiliar in global health, especially given recent contributions exploring what it would mean to de-colonize global health research, funding, and practice [ 30 , 31 ]. Discussions of research ethics applied to AI research in global health contexts are deeply infused with power imbalances. The existing context of global health is one in which high-income countries primarily located in the “Global North” charitably invest in projects taking place primarily in the “Global South” while recouping knowledge, financial, and reputational benefits [ 32 ]. With respect to AI development in particular, recent examples of digital colonialism frame dialogue about global partnerships, raising attention to the role of large commercial entities and global financial capitalism in global health research [ 21 , 22 ]. Furthermore, the power of governance organizations such as RECs to intervene in the process of AI research in global health varies widely around the world, depending on the authorities assigned to them by domestic research governance policies. These observations frame the challenges outlined in our paper, highlighting the difficulties associated with making meaningful change in this field.

Despite these overarching challenges of the global health research context, there are clear strategies for progress in this domain. Firstly, AI innovation is rapidly evolving, which means approaches to the governance of AI for health are rapidly evolving too. Such rapid evolution presents an important opportunity for governance leaders to clarify their vision and influence over AI innovation in global health research, boosting the expertise, structure, and functionality required to meet the demands of research involving AI. Secondly, the research ethics community has strong international ties, linked to a global scholarly community that is committed to sharing insights and best practices around the world. This global community can be leveraged to coordinate efforts to produce advances in the capabilities and authorities of governance leaders to meaningfully govern AI research for global health given the challenges summarized in our paper.

Limitations

Our paper includes two specific limitations that we address explicitly here. First, it is still early in the lifetime of the development of applications of AI for use in global health, and as such, the global community has had limited opportunity to learn from experience. For example, there were many fewer case studies, which detail experiences with the actual implementation of an AI technology, submitted to GFBR 2022 for consideration than was expected. In contrast, there were many more governance reports submitted, which detail the processes and outputs of governance processes that anticipate the development and dissemination of AI technologies. This observation represents both a success and a challenge. It is a success that so many groups are engaging in anticipatory governance of AI technologies, exploring evidence of their likely impacts and governing technologies in novel and well-designed ways. It is a challenge that there is little experience to build upon of the successful implementation of AI technologies in ways that have limited harms while promoting innovation. Further experience with AI technologies in global health will contribute to revising and enhancing the challenges and recommendations we have outlined in our paper.

Second, global trends in the politics and economics of AI technologies are evolving rapidly. Although some nations are advancing detailed policy approaches to regulating AI more generally, including for uses in health care and public health, the impacts of corporate investments in AI and political responses related to governance remain to be seen. The excitement around large language models (LLMs) and large multimodal models (LMMs) has drawn deeper attention to the challenges of regulating AI in any general sense, opening dialogue about health sector-specific regulations. The direction of this global dialogue, strongly linked to high-profile corporate actors and multi-national governance institutions, will strongly influence the development of boundaries around what is possible for the ethical governance of AI for global health. We have written this paper at a point when these developments are proceeding rapidly, and as such, we acknowledge that our recommendations will need updating as the broader field evolves.

Ultimately, coordination and collaboration between many stakeholders in the research ethics ecosystem will be necessary to strengthen the ethical governance of AI in global health research. The 2022 GFBR illustrated several innovations in ethical governance of AI for global health research, as well as several areas in need of urgent attention internationally. This summary is intended to inform international and domestic efforts to strengthen research ethics and support the evolution of governance leadership to meet the demands of AI in global health research.

Data availability

All data and materials analyzed to produce this paper are available on the GFBR website: https://www.gfbr.global/past-meetings/16th-forum-cape-town-south-africa-29-30-november-2022/ .

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Acknowledgements

We would like to acknowledge the outstanding contributions of the attendees of GFBR 2022 in Cape Town, South Africa. This paper is authored by members of the GFBR 2022 Planning Committee. We would like to acknowledge additional members Tamra Lysaght, National University of Singapore, and Niresh Bhagwandin, South African Medical Research Council, for their input during the planning stages and as reviewers of the applications to attend the Forum.

This work was supported by Wellcome [222525/Z/21/Z], the US National Institutes of Health, the UK Medical Research Council (part of UK Research and Innovation), and the South African Medical Research Council through funding to the Global Forum on Bioethics in Research.

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Caesar A. Atuire

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Shaw, J., Ali, J., Atuire, C.A. et al. Research ethics and artificial intelligence for global health: perspectives from the global forum on bioethics in research. BMC Med Ethics 25 , 46 (2024). https://doi.org/10.1186/s12910-024-01044-w

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True-life bioethics cases discussed among the faiths

Introducing Sikh case study

Frank but respectful interreligious discussions proved so fruitful during a “Facing Ethical Dilemmas with Faith” case conference last month that organizers are planning a book and anticipating the event recurring annually.

Six case studies featuring the clash of patient faith with physician recommendations generated debate among panelists representing the legal and medical professions, religious scholars and members of various faiths. The March 12 event was held by Loma Linda University School of Religion .

In a prompt of the day’s open and honest atmosphere, the “Faith at Its Best” keynote by Gerald Winslow, PhD, highlighted three virtues to cultivate for healthy interfaith relations: humility, attentiveness and joy.    

“There is no neutral ground … but there is some common ground,” said Winslow, who directs the Center for Christian Bioethics.

Case study discussion filled the rest of the day’s agenda.

The case studies: matters of life and death

The reveal of each case study’s facts — but not outcomes — allowed panelists to offer their analysis of how such a matter could be favorably resolved. Some ended happily.

Case 1: Sikhism and a suicidal teenager

Bullying pushed a young teen girl into depression and suicidal thoughts after she grew facial hair as a result of polycystic ovarian syndrome. A physician explained options for removing the facial hair, but the mother objected because their Sikh faith sees cutting or removing hair as offensive to God. Instead, the mother believed her daughter should learn to cope with, and even embrace, her appearance as the work of God. The doctor argued for a social services consult or mental health treatment, stating that the risk to the teen’s life was of higher priority.

  Case 2: Christian Science and diabetic ketoacidosis

A recent convert to Christian Science took her diabetic young daughter to a school-required physical after the girl told her teacher she was experiencing excessive thirst, nausea and fatigue — signs of potentially fatal diabetic ketoacidosis. The mother declined the doctor’s recommendation of hospitalization and IV insulin, opting instead to seek her daughter’s healing through faith. Within three weeks, the daughter lost consciousness at school and was taken by ambulance to the emergency room, where she was admitted.  

Case 3: Jainism and life-saving antibiotics

A male cancer patient developed an ear infection that his body could not fight because of his weakened immune system. The infection abscessed to his right temporal brain lobe. The doctor ordered antibiotics, but the patient refused. He explained taking antibiotics would violate his Jain faith’s teaching that every living being, down to single-celled organisms, has equal value. The physician requested an ethics consult.

Case 4: Islam and preserving future fertility

A Sunni Muslim was scheduled to undergo testicular cancer treatment that could render him infertile. His wife wanted to start a family, and the doctor recommended collecting and freezing the husband’s sperm prior to radiation. Uncomfortable, the patient explained that masturbation was forbidden in his religion. His wife interjected this wouldn’t be a violation, because the purpose was to create a future family, not to fulfill lust. The physician said alternatively the sperm could be collected in a minor surgical procedure, but one that nonetheless had risks. The wife begged her husband to avoid the surgical route.

Case 5: Zoroastrianism and disposing a removed gallbladder

A woman who needed surgery to remove her gall bladder asked the doctor how the organ would be disposed of. Incineration was his answer. She explained this went against her religion’s belief that fire is a sacred symbol of God and should not be polluted with dead matter. Instead, she asked if she could have the tissue returned to her to dispose of in a manner acceptable to her faith. Laughing, the doctor said it wasn’t possible. The patient stated she would decline the surgery if she couldn’t be ensured of the organ’s proper destruction.

Case 6: Evangelical Christianity and circumcising a hemophiliac newborn

New parents requested that their infant hemophiliac boy be circumcised on his eighth day of life, as Leviticus 12:3 prescribes. The medical staff cautioned against this due to the baby’s risk of excessive bleeding. Undaunted, the parents believed God would protect their son because they were acting in faith. Two physicians refused to do it as a violation of their Hippocratic Oath. A third physician agreed. The case was sent up to the hospital ethics committee for a final decision.

After the panel discussion for each case, audience members were invited to ask questions or state their viewpoints.

“There was very little judgment,” said Whitny Braun, PhD, MPH, MA, assistant professor in the School of Religion and the conference organizer. “Differing opinions were discussed in a healthy way, based on pragmatism rather than criticism of one another’s faith.”

Case outcomes: 66 percent survival

The reveal of the case outcomes included sad news. Two of the cases ended in death. Sticking with his decision to refuse antibiotics, the cancer patient of Jain faith died from the ear infection that had abscessed to his brain.

Not given a choice was the hemophiliac newborn boy. The hospital allowed a willing physician to circumcise the child at his Evangelical parents’ insistence. The baby bled unstoppably and died three days later from renal failure.

The other two cases involving children were resolved via compromise in one case and the legal system in the other. The teenage “Bearded Lady,” as bullies had called her, was allowed by her mother to undergo facial hair removal treatment with the caveat that she begin to wear a turban to show her devotion to Sikhism. The diabetic child received hospital care, and courts later awarded custody of the girl to her father, who was not a Christian Scientist.

Resolved most easily was the Zoroastrianism woman’s request to have her removed gall bladder returned to her following surgery. The doctor, it turned out, was misinformed that she would not be allowed to do so.

Lastly, one case ended in mystery. The Muslim man struggling with the decision of how to have his sperm collected to start a future family never returned to the doctor’s office.

About the conference

“Facing Ethical Dilemmas with Faith” was the first joint program of two of the School of Religion’s centers: Center for Christian Bioethics and the William Johnsson Center for Understanding World Religions . Organizers and panelists plan to turn their enthusiasm into a volume of essays about the case studies, and the conference may become an annual event.

“The conference is a great forum for inviting faith leaders together to discuss the importance of spirituality and healthcare,” Braun said.

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In Iceland, almost all diagnosed Down syndrome pregnancies are aborted after prenatal testing. Some bioethics experts are concerned

Iceland is known for its rugged landscape, rich Viking history, and progressive social politics.

But the Nordic island nation has another lesser-known distinction: There is next to no-one in its population with Down syndrome.

According to the Icelandic government, two or three children with Down syndrome are born on average each year.

That's a rate 2.5 times less than in Australia and almost four times less than in the USA.

The explanation has been well documented. In Iceland, upwards of 85 per cent of women elect to have prenatal testing, and close to 100 per cent of pregnancies where Down syndrome is diagnosed are terminated.

Denmark isn't far behind, with a termination rate of 98 per cent.

These are deeply personal and often painful decisions made by prospective parents. But experts and disability advocates say this statistic also raises complex and confronting questions.

Questions like, what could this mean for the diversity of our future societies? And what does it say about how we value those living with disabilities?

A difficult choice

Down syndrome, also known as Trisomy 21, is a genetic condition that occurs at conception. Where most people have 46 chromosomes, those with Down syndrome have 47.

The condition usually confers some level of intellectual disability, increased risk of certain health conditions like heart defects, vision and hearing loss, developmental delays and characteristic physical features.

During the early stages of pregnancy, ultrasounds and a non-invasive blood test are commonly used to screen for Down syndrome and other chromosomal irregularities. Diagnostic tests can then be done to provide more definitive results.

Data shows that in the case of a positive result for Down syndrome, women around the world mostly choose to terminate their pregnancy.

In Australia and the UK, the termination rate is estimated to be around 90 per cent. In the USA, researchers put it between 67 and 85 per cent.

Dominic Wilkinson, a consultant in newborn intensive care and a professor of medical ethics at the University of Oxford, says he's "never met a parent who's made such a decision lightly".

"Parents find these types of decisions incredibly difficult," he says.

"[Decisions before birth] are about the family that they want to have, the child that they feel in a position to support and the life that they would wish for their future child."

Professor Wilkinson says there are a range of factors that affect that choice, including the individual values of the family and the cultural values of their community.

"Sometimes those decisions are shaped in positive ways, by hearing the support and the openness of society to support women's choices either to continue or to discontinue a pregnancy," he says.

"Other times, those choices are certainly shaped in more negative ways by prejudice or bias or fears about the ability of a society or family to access the care that they would need."

Julia Hales, an actor and artist with Down syndrome, has seen those choices first-hand.

In an ABC documentary she presented, she examined the impact of prenatal testing for Down syndrome on families and communities — including her own.

She says while it was a confronting process to witness, she felt empathy for those who decided to terminate their pregnancy.

"Inside me, it's quite sad. It is sad not to have babies with Down syndrome," she says.

"But I completely understand what [pregnant women] are going through … They don't see the other side but that's OK. If they feel like they want to terminate, then it's completely up to them."

The case of Iceland

The story behind Iceland's high termination rate is debated.

As with other Nordic states, it has a progressive healthcare system, especially when it comes to abortion.

Universal health care is enshrined in Icelandic law and almost entirely publicly funded. Abortion was first legalised for certain cases in 1935, and Iceland's current termination policy is considered highly progressive.

Iceland was also an early adopter of first-trimester combined screening — which can detect Down syndrome and other genomic conditions — and began offering it to all pregnant women in 2003, although access can be geographically challenging for some. Studies report that in Icelandic culture, prenatal testing is widely accepted.

But Ástríður Stefánsdóttir, a medical doctor and a professor in applied ethics at the University of Iceland, doubts cultural factors are all that significant.

"I'm not sure that our attitude is so different from other countries. It might just be that the decision is taken at another place in the process," she says.

"Those who take the tests have already made up their mind that they are not going to have a baby with Trisomy 21. So if there is a [high] abortion rate, that's not strange."

She says it's more relevant that "it's impossible to get lost" in the Icelandic healthcare system.

"Everyone goes into the system. We don't have many pregnancies where women never have any touch with the medical system — I think I can say the number is zero."

However, Professor Stefánsdóttir says Iceland, like most countries, could do more to inform the public about what life with a child with Down syndrome could look like.

"I know [medical professionals] try to do their absolute best in informing people, but we can always do better," she says.

"And of course, it's best if people know this before they get pregnant and they don't have to face all of this at the time of pregnancy, because it is limited how much you can discuss this in 20 minutes of meeting time with the midwife or doctor."

She believes increased connections to those living with Down syndrome would help.

"Personally, I think the best thing we can do is to have people with intellectual disability and people with Down syndrome … publicly visible," she says.

"This changes the way people think [through] personal histories, personal encounters."

Nonetheless, she says the high rates of termination have real consequences for those with Down syndrome and their communities.

"When we start listening to what people with Down syndrome themselves have to say about this … they find it disturbing … and we hear the same stories from their families," she says.

"My view is that it has influence. And the simple fact that the tests exist devalues their life."

Concerns over misinformation

In Australia, negative experiences of prenatal testing have been highlighted lately, by a recent submission to the NSW Birth Trauma Inquiry by Down Syndrome NSW.

The peak body, which represents more than 5,000 people, told the inquiry that 49 per cent of families surveyed felt pressured by medical professionals to terminate their pregnancies.

Women have also reported feeling alienated, neglected and discriminated against during and after prenatal testing, and being given biased information about their child's future.

Darryl Steff, the CEO of Down Syndrome Australia, says these are worrying accounts.

"Our concern is that the information being presented to prospective parents is sometimes inaccurate, biased, not delivered in the best way," he says.

"Prospective parents have the right to make the decision that's appropriate for them, and everyone's circumstances are different … so it's not about a pro-life position, it's about an informed choice."

Bonney Corbin is the director of advocacy at MSI Asia Pacific, an "unapologetically pro-choice" non-profit organisation that works to provide women with reproductive health care, including contraception and abortions.

She was also born with several genetic mutations, which she says "would warrant a clinical recommendation to consider having an abortion".

As an advocate in both disability and pro-choice communities, Ms Corbin believes non-judgemental care and informed consent are key.

"For a person who's pregnant, it's their decision and theirs alone how they proceed with a pregnancy," she says.

"It needs to not be about decreasing the rate of disability, it needs to be about increasing the choices that people have in pregnancy."

In her work with MSI and as chair of the Australian Women's Health Alliance, Ms Corbin says she's seen ableism permeate almost every aspect of preconception and prenatal care.

"So much of the rhetoric around prenatal testing, foetal anomaly identification and coercion towards abortion is laced with some sort of value-based judgment that we need to eliminate disability," she says.

That can come down to the language medical professionals use when they explain a prenatal diagnosis.

"It can be done in so many different ways, [like] 'I'm sorry to say that …' or 'I have bad news'," Ms Corbin says.

"[If] it's said with a frown or a smile, that can really influence the whole context of that pregnancy scan and the decisions that result from it."

Is this eugenics?

Bioethicists have long debated whether eradicating Down syndrome through abortion amounts to eugenics.

Rosemarie Garland-Thomson, a bioethicist and a professor emeritus in English literature at Emory University, believes it is "definitely a eugenic initiative".

She explains that eugenics began as the "progressive" idea that humans have "a moral, political and social obligation to improve human communities" through medical science.

However, history shows how that logic played out through the horrors of the Holocaust and other mass violence in the 20th century.

In the aftermath of World War II, eugenics was roundly denounced and the field of bioethics rose in prominence.

"Yet, many have argued that this fundamental premise of eugenics, that the best people ought to be encouraged and the least fit or the least desirable people should be discouraged from existence, has carried forward in ways that are ethically distressing," Professor Garland-Thomson says.

"And genetic conditions, especially Down syndrome, represent the most important cases here."

In a society that "values consciousness and cognitive capability", people with intellectual disabilities are particularly devalued, she says.

"Because the human characteristics that we think of as [related to] Down syndrome are largely identified as undesirable characteristics … it becomes logical to eliminate the so-called disease that is Down syndrome, and with it, the persons get eliminated.

"This is what makes, in my view and in many people's views, the health initiative of eliminating Down syndrome … unethical and eugenic."

But Professor Wilkinson from the University of Oxford thinks very differently about the issue.

"I think it's very important to distinguish between what is clearly ethically deeply problematic and wrongful, which is state-enforced decision-making in order to 'improve' the quality of the genes of the population … That's what was attempted in the middle of the 20th century in a very crude way," he says.

"That's not what's contemplated or referred to in relation to offering the option, non-compulsorily and non-coercively, to women and families of finding important and relevant information about conditions that might seriously affect their future child's life and then supporting them to make informed choices."

No matter how medical technology may progress, he says we're going to need the "genomic literacy" to have these conversations.

"Those types of issues are not necessarily fundamentally changed by the advent of new forms of technology, but they are difficult ones and they're ones that we need to be able to support to support public reflection on."

A less diverse world

Down Syndrome Australia CEO Mr Steff says part of that reflection includes considering the makeup of our societies.

At a macro level, he says selecting against Down syndrome goes towards "narrowing the diversity of a community".

"There are different people all around the world, in every community, with different abilities, different disabilities, and that's part of the rich fabric of our communities," he says.

"It would be disappointing to see bits of that disappearing."

He stresses that people with Down syndrome overwhelmingly consider themselves to have great lives, especially as health care, early intervention and support services have improved over the past few decades.

The life expectancy of a person with Down syndrome in Australia is now 60 years; in the 1950s, it was just 15. Those with Down syndrome were also commonly institutionalised — sometimes from birth — until around four decades ago.

Ms Hales agrees that the lives of those with Down syndrome can be as rich as anyone else's.

"I've been living independently for the last 24 years, I've been going to work, I've done amazing shows … I've got a great life," she says.

"The people out there in the Down syndrome community are some of the most inspiring people I've ever met."

She has some words of advice for those choosing to go through with their pregnancies with a Down syndrome diagnosis.

"Fall in love with your baby. Just raise them as part of the family … They're going to have a great life, with family that they love and friends.

"Don't worry. You don't have to be scared."

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Inside the opaque world of IVF, where errors are rarely made public

It was one of the worst accidents in the history of reproductive medicine.

A storage tank at a San Francisco fertility center imploded , its trove of 4,000 human eggs and embryos damaged or destroyed. A jury later found that a manufacturing defect was largely to blame for the disaster but also implicated the center. The lab director had unplugged a malfunctioning computer, muting 128 alarms that warned of trouble. Lab personnel did not transfer the contents of the vessel to a backup tank when the computer failed. And there is no evidence that repairs were initiated for the 13 days between these first problems and the implosion.

The missteps were revealed only because a lawsuit and 2021 civil trial offered a rare glimpse inside the closed world of U.S. fertility care. Most of the time, experts say, errors and accidents go unreported in the burgeoning fertility industry , which is largely self-policed . It is not mandated to report errant episodes to the government, the public, any professional organization or even patients — despite a code of ethics that explicitly says practitioners should promptly tell patients about lost or destroyed genetic material.

This opaque system is under scrutiny again after the Alabama Supreme Court ruled this year that frozen embryos are children . That case involved a patient who accidentally dropped and destroyed embryos belonging to three couples at a fertility clinic.

“In other areas of health care, states require hospitals to monitor and report major avoidable errors, things like mismatched blood transfusions or surgery on the wrong body part,” said Dov Fox, a law professor and director of the Center for Health Law Policy and Bioethics at the University of San Diego, who studies the fertility industry. “They call these ‘never events’ because these are things that just shouldn’t happen.

“No agency or authority tracks or polices what might be called ‘reproductive never events.’”

In vitro fertilization (IVF) is the most common form of assisted reproduction. Doctors retrieve eggs from a patient’s ovaries and an embryologist combines them with sperm to create embryos in a lab. The embryos can be frozen for future use or transferred to the uterus days after they are created.

States license clinics and professional groups govern practitioners. But the inspection and accreditation of labs are handled mostly by private, voluntary organizations that consider that information the property of clinics. Many inspectors are the directors of labs themselves, a fraternity of scientists who review one another’s work, looking for systemic problems, not lost reproductive material, according to the College of American Pathologists.

The vast, vast supermajority of mistakes in fertility clinics, the public doesn’t even know about. — Adam B. Wolf, an attorney for fertility plaintiffs

The industry insists the error rate is low. Sean Tipton, chief advocacy and policy officer for the American Society for Reproductive Medicine, which represents fertility practitioners, disputed the idea that they are more lightly regulated than other medical disciplines: “For the most part reproductive medicine and infertility care are regulated the same way as other areas of medicine.”

If all else fails, he said, patients have access to the courts to redress wrongdoing, as they do for other kinds of doctors.

But most lawsuits result in settlements with nondisclosure provisions, reinforcing the secrecy that surrounds the multibillion-dollar fertility industry . Many cases are settled even before lawsuits are filed, attorneys said.

“The vast, vast supermajority of mistakes in fertility clinics, the public doesn’t even know about,” said Adam B. Wolf, a prominent attorney for fertility plaintiffs, including those in the San Francisco case.

Hopes destroyed by tank defect, human error

All of Monica Coakley’s 18 eggs were in cryopreservation Tank 4 at Pacific Fertility Center when it crumpled like an empty soda can, devastating nearly 500 people’s hopes of having children. She was 42, did not have a partner and was not ready to get pregnant, but freezing her reproductive material had given her assurance that she had time.

And suddenly that was gone. She tried to have more eggs retrieved, but the procedure did not work. She said she accepted settlements from the San Francisco clinic and Chart Inc., the tank manufacturer, and is prohibited from disclosing the terms.

“It makes me sick, still,” Coakley, now 47, said in an interview. “I look at this money now that’s in my account and it doesn’t make me feel any better. I wake up most mornings and still go, ‘I can’t believe I don’t have kids.’”

Officials and lawyers representing Pacific Fertility and Chart Inc. did not respond to numerous requests for comment.

Joseph Conaghan, the lab director who disconnected the computer that monitored conditions in the tank, no longer works at Pacific Fertility. Neither he nor his attorneys responded to requests for comment.

At the trial, however, Conaghan defended his actions, saying his staff closely monitored Tank 4 after he unplugged the defective computer because it was delivering inaccurate readings in the tank. Manual checks of the level of liquid nitrogen, which keeps eggs and embryos frozen, in tanks without computers have proved reliable for decades, he said, and a sudden crack in a weld in a storage tank, which caused the catastrophe, could not have been foreseen.

I look at this money now that’s in my account and it doesn’t make me feel any better. I wake up most mornings and still go, ‘I can’t believe I don’t have kids.’ — Monica Coakley

The same March 2018 weekend that Tank 4 imploded, a cryopreservation tank more than 2,200 miles away in suburban Cleveland also failed. That accident, which caused temperatures in the tank to rise rapidly, destroyed 4,000 eggs and embryos belonging to about 950 people.

That disaster, clinic officials acknowledged, was due to human error. Staff at University Hospitals Ahuja in Beachwood, Ohio, had deactivated the remote alarm that should have notified lab employees of a problem with the tank on a Saturday.

All the lawsuits filed over the Cleveland failure were settled out of court. No terms were disclosed.

IVF labs facing increased pressures

The boom in egg and embryo freezing became possible a decade ago after new techniques allowed for quick freezing without harming delicate cells. That is one of many advances in assisted reproduction since Louise Brown was born in Britain 46 years ago as the first human conceived by IVF.

In the United States, there were 167,689 cycles to freeze eggs and embryos in 2021, nearly double the number in 2017, according to the Centers for Disease Control and Prevention. The demand to perform increasing numbers of procedures has put pressure on IVF labs, where a shortage of trained lab workers — known as embryologists — has grown worse. Embryologists generally learn the painstaking craft of handling 60-cell bundles on the job.

In most clinics, reproductive material is preserved in liquid nitrogen in double-walled tanks at nearly minus-200 degrees Celsius. These tanks use a vacuum between the two walls to keep material cold, like a Thermos. Liquid nitrogen evaporates and must be added and monitored 365 days a year. Computers, alarms and auto-fill devices help, but ultimate responsibility falls on the people running the lab.

No one has a solid handle on what is actually going on. — Michael Reed, lab director at a fertility clinic in New Mexico

Private equity firms have purchased many fertility clinics in recent years, building large chains and placing increasing emphasis on profitability. In one study , the authors concluded that private equity appears to own a larger share of fertility clinics than it does in any other medical specialty or service.

Without data on errors, it is impossible to measure the quality of U.S. reproductive care. Most embryologists and fertility lab directors interviewed by The Washington Post described misplaced or destroyed reproductive material as rare occurrences, but “no one has a solid handle on what is actually going on,” said Michael Reed, lab director at a tiny fertility clinic in New Mexico, who would like to see more transparency.

An array of government organizations play limited roles in the assisted reproduction field. The CDC collects data on success rates from more than 450 clinics. The Food and Drug Administration inspects equipment and tissue to prevent transmission of disease through eggs and sperm. The Centers for Medicare and Medicaid Services, which administers laboratory laws, exerts some oversight. Some states add other requirements and may investigate accidents.

But generally the federal government stays out of fertility clinics because of the fraught politics, for both Democrats and Republicans, of regulating the creation and destruction of embryos.

In the United Kingdom, where fertility clinics are required by law to report mistakes, the government’s Human Fertilisation and Embryology Authority reported that fewer than 1 percent of 90,000 cycles resulted in a mistake of any kind in 2021-2022.

Tipton, of the American Society for Reproductive Medicine, noted that it is much easier for European governments to collect such data and more tightly regulate fertility practices because, for the most part, they also control the delivery of health care.

“When government pays for something, they can exert a whole lot more control,” he said.

In one of the only academic studies of errors in U.S. fertility labs, Boston IVF, a large chain of fertility clinics, reported mistakes in 0.23 percent of 36,654 IVF treatment cycles in a review of its own records from 2003 to 2015. Mistakes included discarding healthy embryos because a patient had signed a form giving “consent to thaw and discard embryos” rather than a document providing “consent to thaw embryos” for implantation. The vast majority of errors had no impact on patients, according to the study.

The two organizations that accredit most clinics in the United States are the College of American Pathologists and the Joint Commission. The pathology group acknowledges that it investigates only if a clinic reports an error, a lawsuit is filed or a problem reaches the media. But other mistakes should surface during biennial inspections, officials said.

“Is it theoretically possible that a serious mistake would happen and we wouldn’t know about it? Of course,” said Richard Scanlan, chairman of the College of American Pathologists’ accreditation committee.

The Joint Commission, which employs paid surveyors to inspect labs, reviews complaints and may ask for responses or conduct follow-up inspections. But details are kept confidential.

Secret settlements

Hundreds of people who lost genetic material in the Pacific Fertility disaster initially sued both the clinic and the tank manufacturer. But contracts between Pacific Fertility and its patients require such disputes to be settled by arbitration, ensuring they remain confidential. All cases against the clinic have been resolved, according to lawyers, who would not say more.

Chart Inc. lost the lawsuit brought by five patients that led to the 2021 civil trial. The jury awarded the patients a total of $15 million, setting the benchmark that helped determine payments to hundreds of others in a March 2023 settlement , court records show. Jurors said Chart was responsible for 90 percent of the damage, and negligence by Pacific Fertility caused the rest. Terms of the larger settlement were not disclosed.

Desperate to have children, some couples nevertheless tried to use the embryos in Tank 4 despite warnings from experts of health risks to both mother and child posed by the uncontrolled thaw of their reproductive material. A report cited as evidence in the trial showed those couples had much less success becoming pregnant or having a live birth than others whose eggs and embryos were not in Tank 4. They also had a significantly higher incidence of low-birth-weight babies.

When an expert witness compared the genetic material from the imploded tank with eggs and embryos thawed purposely from another Pacific Fertility tank, he found that only about a quarter as many eggs and half as many embryos were viable after the catastrophe. A lawyer for Chart suggested there was no way the expert could predict what might happen with the rest of the material that had not yet been implanted.

Kevin and Laura Parsell, an Ohio couple, had a boy and a girl from previous in vitro fertilization at Pacific Fertility. A third pregnancy assisted by the fertility clinic ended in miscarriage. But their plan had always been seven healthy children.

The Ohio couple asked the fertility clinic to examine the four embryos they had stored in Tank 4 for signs of viability. They had the best two implanted, or “transferred” to Laura, in the parlance of fertility care, according to testimony in the trial. But neither produced another child. Under questioning from a Chart attorney, one expert acknowledged it is impossible to be completely certain the tank implosion was responsible for those two failures.

The couple took the remaining two embryos home and buried them in a cemetery. Each Christmas, they hang seven snowflake ornaments on their tree in memory of the family they don’t have.

The couple received a settlement and declined to be interviewed by The Post.

“It is like me asking you to pick four of your family members … and they are ripped out of your life,” Laura Parsell testified. “It doesn’t matter if you picked a son or a daughter, or your grandparent, the whole family tree is gone.”

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Case Study – Vaccinating Children

December 2021

Bioethics case study on vaccinating children.

Anwar is a five-year old child who is eligible to get a recommended COVID vaccine recently approved for children 5-11 years. He is at the pediatrician’s office with his parents. Though Anwar is perfectly compliant—with the help of a small toy he is given by the nurse—the parents have a heated exchange in the examination room. They disagree over the effectiveness and efficacy of the vaccine, but especially so about its safety. Citing something persuasive he found online about the potential adverse side-effects of COVID vaccine, Dad begs Mom to reconsider vaccination of their child. They simply disagree, having believed contradictory sources of information.

Anwar still seems willing to get jabbed but is visibly frustrated by his parents’ squabble. The clinician is torn between trying to mediate between the parents, obtain consent for vaccination from the parent who seems most reasonable (Mom), or just reschedule the appointment for a time when the parents have come to consensus—if ever. In the meantime, a pandemic rages, placing all unvaccinated persons, including his young patient, at higher risk. What should be done?