Also by Jacob M. Appel
ESSAYS
Phoning Home
NOVELS
Millard Salter’s Last Day
The Mask of Sanity
The Biology of Luck
Wedding Wipeout
The Man Who Wouldn’t Stand Up
STORY COLLECTIONS
Amazing Things Are Happening Here
The Amazing Mr. Morality
The Liars’ Asylum
The Topless Widow of Herkimer Street
Coulrophobia & Fata Morgana
The Magic Laundry
Miracles and Conundrums of the Secondary Planets
Einstein’s Beach House
Scouting for the Reaper
POEMS
The Cynic in Extremis
Who Says You’re Dead?
Medical & Ethical Dilemmas for the Curious & Concerned
Jacob M. Appel, MD
ALGONQUIN BOOKS OF CHAPEL HILL 2019
In memory of Professor Edward Beiser,
who asked all the hard questions,
and for Rosalie, who helps me find the answers
Contents
Introduction
Part One: Inside the Mind of a Doctor
1. “You’re Not My Real Dad”
Reflection: False Paternity
2. “How Many of Your Patients Survive?”
Reflection: Informed Consent
3. “Please Don’t Tell Anyone about My Crime”
Reflection: Doctor-Patient Confidentiality
4. “Please Don’t Put It in My Chart”
Reflection: Privacy and Medical Records
5. When the President Has a Secret
Reflection: Public Disclosure
6. “The Worst Patient Ever”
Reflection: Patient Conduct
7. “I’d Never Actually Do It, But …”
Reflection: A Doctor’s Duty to Report
8. Sleeping with the Doctor
Reflection: Doctor-Patient Attraction
9. A Physician with a Dark Past
Reflection: Professional Standards
10. Turning a Blind Eye to Torture
Reflection: Enhanced Interrogation
11. When Medical Secrets Are Business Secrets
Reflection: CEO Responsibility
12. A Doctor’s Buried History
Reflection: Evolving Ethical Norms
Part Two: Body Parts
13. “Take My Foot, Please”
Reflection: Elective Limb Amputation
14. Should She Stop Growing?
Reflection: Growth-Attenuation Therapy
15. “She Must Be Marriageable”
Reflection: Female Genital Cutting
16. “Give Her My Liver”
Reflection: Live Organ Donation
17. “Am I My Brother’s Donor?”
Reflection: The Unwilling Donor
18. Organs for Celebrities
Reflection: Favoritism
19. Ads for Organs
Reflection: The Free Market of Medicine
20. Transplantation on Death Row
Reflection: Prisoners’ Rights
21. A Chimp Heart
Reflection: Xenotransplantation
22. A Head Case
Reflection: Experimental Transplants
23. Reducing Sexual Urges
Reflection: Voluntary Castration
24. “Give Me a Horn”
Reflection: Body Modifications
25. Conjoined Twins at Odds
Reflection: Quality of Life / Sanctity of Life
Part Three: Making Babies
26. A Child with a Purpose
Reflection: Savior Siblings
27. “We Want a Deaf Baby”
Reflection: Reproductive Technologies and Disability
28. Who Owns That Embryo?
Reflection: Embryo Custody
29. Privacy Invasion or Child Protection?
Reflection: Punishing Prenatal Conduct
30. “We’re Waiting for a Sign from God”
Reflection: Preemptive Detention
31. “That Woman Stole My Sperm”
Reflection: Forced Abortion
32. “I Won’t Have a C-Section”
Reflection: Involuntary Cesareans
33. “Whose Fetus Is This?”
Reflection: Surrogacy after a Homicide
34. When Sterilization Is Forced
Reflection: Eugenics in History
35. Paying for Girls
Reflection: Sex Selection
36. Tube-Tied
Reflection: Wrongful Birth
37. When Human Cloning Becomes Possible
Reflection: Human Cloning
38. Bringing Up (Neanderthal) Baby
Reflection: Animal Cloning
39. Fertility and Fundamentalism
Reflection: LGBTQ Rights
Part Four: The Good of the Many
40. Paid to Not Have Kids
Reflection: The Rights of Substance Abusers
41. “They Tried to Make Me Go to Rehab”
Reflection: Drug Court
42. A Modern Typhoid Mary
Reflection: Mandatory Quarantines
43. Beyond 23andMe
Reflection: DNA Dragnets
44. Requiring a DNA Test
Reflection: Mandatory Genetic Screening
45. “I’d Rather Die Than Abandon My Hunger Strike”
Reflection: Force-Feeding Prisoners
46. Nonvaccinators in the Waiting Room
Reflection: Parental Dissent
47. The Evidence Is in His Leg
Reflection: Searches and Seizures
48. Echoes of Tuskegee
Reflection: Research Standards
49. “It Will Help Others, Not You”
Reflection: Research or Treatment?
50. Lithium in the Water
Reflection: Preventing Suicide
51. “Why Didn’t You Warn Me I Was at Risk?”
Reflection: Inherited Diseases and Privacy
52. The Boundaries between Mice and Men
Reflection: Human-Animal Hybrids
53. Doctoring a Dictator
Reflection: Human Rights and Treatment
Part Five: Practical Matters
54. Screening Future Employees
Reflection: Genetic Discrimination
55. “I Want a White Surgeon”
Reflection: Patient Prejudice
56. “We Don’t Tell Our Elders They Have Cancer”
Reflection: Autonomy and Culture
57. “The Best Treatment Is Prayer”
Reflection: Cognitive Capacity
58. Well-Intentioned Fraud
Reflection: Health Insurance
59. A Most Expensive Patient
Reflection: Visible and Invisible Victims
60. When Doctors Choose Who Lives
Reflection: Ventilator Allocation
61. A Cheaper Knockoff
Reflection: Intellectual Property
62. No Black Sperm Donors Need Apply
Reflection: The Business of Reproduction
63. “She Can Share a Room with a Man”
Reflection: Gender-Blind Hospital Rooms
64. Healthy Workers Only
Reflection: Employee Rights
65. Will I Get Alzheimer’s?
Reflection: Genetic Testing and Privacy
66. “I Want to Live to Meet My Child”
Reflection: Healthcare Rationing
67. Pills for Peak Performance
Reflection: Cognitive Enhancement
68. “I’d Rather Be Psychotic Than Stupid”
Reflection: Psychiatric Advance Directives
69. Hazardous Hobbies
Reflection: The Cost of Risk
70. Sex in the Nursing Home
Reflection: Dementia and Consent
Part Six: End-of-Life Issues
71. Who Says You’re Dead?
Reflection: Defining Death
72. Easing Suffering, Hastening Death
Reflection: Pediatric Euthanasia
73. Death and Taxes
Reflection: Inheritance
74. “Did He Have AIDS?”
Reflection: Posthumous Privacy
75. Stranded on a Ventilator
Reflection: Physician-Assisted Suicide
76. “Give Me My Late Fiancé’s Sperm”
Reflection: Posthumous Sperm Retrieval
77. Waiting for Reincarnation
Reflection: Death-Defying Decisions
78. Cadaver Confusion
Reflection: Therapeutic Privilege
79. “He’d Rather Die Than Live Like This”
Reflection: Withdrawing Life Support
Sources and Further Reading
About the Author
Introduction
Today’s hospitals and clinics are the settings of some of the most challenging and controversial ethical dilemmas our society confronts. Every day, it seems, a pioneering researcher or clinician announces a new breakthrough: hand transplants, cloned sheep, targeted biological cancer therapies, cognitive enhancers, preimplantation genetic screening, transgenic mice—the list of scientific “miracles” seems endless. With these technologies, of course, arise far more complex moral challenges. How to allocate scarce donor hearts and kidneys among potential recipients, for example, is not an issue unless the immunosuppressive drugs that prevent our bodies from rejecting those organs exist. Now they do.
Two recent technological developments offer windows into the strikingly different sorts of ethical challenges that such advances pose. One of these innovations is three-parent conception. As readers may or may not recall from high school biology, most of our DNA is housed in the nuclei of our cells, but some of our genetic blueprint is contained in small organelles outside the nucleus called mitochondria. Both types of DNA are necessary to produce a healthy baby. Under rare circumstances, the DNA in the mitochondria becomes defective through mutations; as a result, babies are born with debilitating genetic diseases. These conditions often run in families. To prevent these diseases, doctors can now take the nucleus of an egg cell from a potential mother who comes from such a family and combine it with the mitochondrial DNA of a second, unrelated woman. This process is known as “cytoplasmic transfer.” If this combined egg is then fertilized by a sperm, the result will be a baby with DNA from three distinct biological parents—what the media has dubbed a “three-parent baby.” On the one hand, this is a great breakthrough: women once faced with the choice of conceiving a sick child or no child at all can now give birth to healthy offspring who live long, meaningful lives. On the other hand, such a process raises novel questions: Should two mothers be listed on this child’s birth certificate? What happens if the woman who contributed mitochondria demands partial custody? Visitation rights? An inheritance? Alternatively, does the child ever have a right to learn the identity of the mitochondrial donor? Or the donor’s medical history? And in the age of surrogate motherhood, if the embryo is implanted inside a third woman’s uterus, what are the ethical and legal implications for a “four-parent baby”? While more than a dozen babies have been born over the past two decades through cytoplasmic transfer, many of these questions remain unresolved.
At the opposite end of the technological spectrum stands an advance far more familiar to the average healthcare consumer: the rise of the electronic medical record (EMR). These days, anyone who visits a doctor’s office or hospital emergency room has likely encountered the ubiquitous appearance of the computerized chart. Experts tell us that these EMRs will decrease medical errors and speed the transfer of health information. The ultimate goal, for many, is a so-called “intraoperative system,” where a patient can walk into any hospital or physician’s office in the nation, and the staff will immediately be able to access the patient’s medical history, current medications, and regular healthcare providers’ contact information. This technology might prove particularly valuable in emergencies or when a patient has lost consciousness.
At the same time, it is fraught with the potential for lost privacy. Millions of healthcare professionals would require access to such a system for it to function well. But some patients may not want their records available in this manner. They may object to their podiatrist knowing that they suffer from a mental illness or their dentist learning what method of contraception they use. The potential for abuse also remains glaring: How will the system know if a pharmacist from Wyoming accesses the medical records of his soon-to-be son-in-law in Florida in order to discover whether his daughter will be marrying a man with a history of drug addiction? And if he does breach the system in this way, how should we punish him? Firing the victim’s future father-in-law may actually exacerbate the injured man’s misfortune and will certainly not put the genie back in the bottle. And then, of course, there is the possibility that hackers will break into the system and post the medical records of everyone on the internet. Certainly, these pitfalls require a careful balancing between privacy rights and access to top-notch care.
As a practicing psychiatrist and bioethicist, I explore these exciting and often daunting ethical dilemmas every day. Over the course of nearly two decades teaching at Brown University, Columbia University, New York University, and the Icahn School of Medicine at Mount Sinai, I have written a trove of these difficult conundrums to stimulate discussion among medical students and residents. Some are drawn from the headlines, others loosely modeled on cases reported in professional journals. A few, painstakingly disguised, come from my own clinical encounters. Whether you are planning a career in healthcare or you are a layperson intrigued by the ethical issues you often witness all too briefly on popular television shows, the dilemmas that follow are designed to let you investigate your own values, engage with difficult “real-world” issues, and argue (in good cheer) with friends and family across the dinner table.
The commentary provided after each conundrum is not intended to sway your opinions. Rather, these are reflections that offer some of the real ways in which established bioethicists, clinicians, and policy makers have tackled similar moral quandaries. Some of these quandaries may arise in your own life, and there is value in having thought about the issues in advance. The hope is that you will examine these questions from multiple vantage points, whatever your ultimate feelings, and will recognize that intelligent people of goodwill may arrive at different conclusions.
In the hospital or in the legislature, addressing these highly fraught subjects can prove emotionally grueling. Fortunately, discussing them hypothetically, in your own living room, should be precisely the opposite: invigorating and inspiring. Above all, the goal of this volume is to convey the intellectual pleasure of engaging with complex ethical questions—to let you do what professional bioethicists do every day. So I do hope you enjoy!
Jacob M. Appel, MD, JD, MPhil, MPH, MFA
Director of Ethics Education in Psychiatry
Assistant Professor of Psychiatry and Medical Education
Icahn School of Medicine at Mount Sinai
Part One
Inside the Mind of a Doctor
The ethical norms of the physician-patient relationship have evolved considerably since the Hippocratic oath of ancient Greece forbade doctors from performing surgery. As late as the nineteenth century, many medical practitioners questioned the value of empirical evidence and offered remedies grounded in unproven theories—including bloodletting, purgatives, and toxic metals like mercury and arsenic. The effective arsenal of the medical practitioner was limited: citrus for scurvy, iodine for goiters, inoculation for smallpox. Encounters with physicians often did more harm than good. Although some sta
tes attempted to rein in the profession, beginning with the passage of New York’s Medical Practices Act in 1806, credentialing standards proved extremely lax. By 1860, the United States had one physician for every 571 people—by far the highest rate in the world.
Over the next century, the American Medical Association (AMA) and various other professional societies played an instrumental role in reshaping healthcare into one of the nation’s most heavily regulated fields. Doctors are now licensed, and their numbers are strictly limited; many medications require a prescription. An age of scientific discovery and rapid advances in technology, including the ongoing genetic revolution, have helped to realize cures that seemed unfathomable only a generation ago. How doctors should use this newfound power remains one of the central ethical challenges of the twenty-first century.
1
“You’re Not My Real Dad”
Fred is a seventy-five-year-old widower who suffers from kidney failure and faces a lifetime on dialysis. After a lengthy discussion with his longtime physician, Dr. Arrowsmith, Fred decides to seek a potential kidney donor among his friends and family members. His only daughter, Linda, who is nearly fifty, agrees to be tested to see whether she is an appropriate match.
The results of the ensuing tests shock Dr. Arrowsmith. Not only is Linda not a match, but genetic markers reveal that Linda cannot be Fred’s biological daughter. In other words, Fred’s late wife likely had an extramarital relationship that led to Linda’s conception.
Should Dr. Arrowsmith tell either father or daughter of this discovery?
Reflection: False Paternity
Misattributed paternity, commonly known as false paternity, is not an uncommon phenomenon. Estimates suggest that 1.7–3.3 percent of children are mistaken regarding the identities of their biological father. This occurrence has significant implications well beyond healthcare. For example, a staple of junior high school science classes once was having students perform ABO (Landsteiner) blood typing on themselves and then comparing their blood types to those reported by their parents. One can imagine the family discord such an exercise might create if parents and children display biologically incompatible results.
On the one hand, if Dr. Arrowsmith decides to reveal Linda’s false paternity, the consequences may prove psychologically devastating for both father and daughter. On the other hand, concealing the information has significant healthcare implications as well. For example, Linda may believe both of her parents to be Scandinavian. If she has children of her own, she may forgo genetic testing for diseases not frequently found among Scandinavians, such as Tay-Sachs disease, a deadly childhood illness that is most common among eastern European Jews, French Canadians, and Louisiana Cajuns. But if Linda’s biological father were not Scandinavian, her own offspring might still be at risk. Not knowing her authentic family history could lead to preventable diseases in her own children. Linda might also unwittingly report an incorrect family history to her doctors, who could then underestimate her risk of everything from early-onset colon cancer to suicide. One can also imagine a different case where the daughter is found not to be a biological child but is still a potential match as a kidney donor. Under those circumstances, sharing the false paternity results might deter the daughter from donating a kidney and thus prove medically compromising to the potential recipient.