Table of Contents
Part I: RIGHTS.
1. Physicians, Patients, and Others: Autonomy, Truth-Telling, and Confidentiality.
Cases and Contexts. Case Presentation: Dax Cowart Rejects Treatment--and Is Ignored. Social Context: Autism and Vaccination. Case Presentation: Suffer the Little Children. Case Presentation: HPV Vaccine: Hope or Hype? Social Context: Placebos and Transparency. Social Context: Health Cops: How Much Regulation is Too Much? Social Context: Medical Tourism. Case Presentation: Healing the Hmong. Case Presentation: The Vegan Baby. BRIEFING SESSION: Autonomy. Paternalism. State Paternalism in Medical and Health Care. Personal Paternalism in Medical and Health Care. Informed Consent and Medical Treatment. Free and Informed Consent. Parents and Children. Pregnancy and Autonomy. Truth-Telling in Medicine. Placebos. Dignity and Consent. Confidentiality (Privacy). Breaching Confidentiality. Duty to Warn? Managed Care. HIPP A Regulations. Ethical Theories: Autonomy, Truth-Telling, Confidentiality. READINGS: Section 1: Consent and Medical Treatment. Onora O’Neill: Paternalism and Partial Autonomy. Gerald Dworkin: Paternalism. Dax Cowart and Robert Burt: Confronting Death: Who Chooses, Who Controls? A Dialogue. Section 2: Truth-Telling and Deception. P. Lichtenberg, et al.: Ethics of the Placebo in Clinical Practice. Mack Lipkin: On Telling Patients the Truth. Susan Cullen and Margaret Klein: Respect for Patients, Physicians, and the Truth. Section 3: Confidentiality. Mark Siegler: Confidentiality in Medicine--A Decrepit Concept. Supreme Court of California: Decision in the Tarasoff Case. Section 4: Children and Consent. Douglas S. Diikema: Parental Refusals of Medical Treatments: The Harm Principle as Threshold for State Intervention. Jeffrey D. Hord et al.: Do Parents Have the Right to Refuse Standard Treatment For Their Child With Favorable-Prognosis Cancer? Anita Catlin: The Dilemma of Jehovah’s Witness Children Who Need Blood to Survive. Eugene Rosam: Reply to Anita Catlin. DECISION SCENARIOS: 1. HPV Vaccination Required? 2. When Prayer is Not Enough. 3. Protecting Against Disease. 4. Weight Cops. 5. Baby vs. Mom. 6. Pregnancy and Autonomy-In Conflict? 7. Is Some Truth Better Than the Whole Truth? 8. When Does No Mean No? 9. Vampire Confession. 10. Whose Decision is It?
2. Research Ethics and Informed Consent.
Cases and Contexts. Social Context: Face Transplant: The Dream of Looking Ordinary. Case Presentation: Abigail Alliance v. FDA: Do Terminally III People Have a Right to Take Experimental Drugs? Social Context: Prisoners as Test Subjects? Case Presentation: Jesse Gelsinger: The First Gene-Therapy Death. Social Context: The Cold-War Radiation Experiments. Case Presentation: The Willowbrook Hepatitis Experiments. Case Presentation: Echoes of Willowbrook or Tuskegee? Experimenting with Children. Case Presentation: The Use of Morally Tainted Sources: The Pernkopf Anatomy. Case Presentation: Stopping the Letrozole Trial: A Case of "Ethical Overkill"? Case Presentation: Baby Fae. BRIEFING SESSION: Clinical Trials. The "Informed" Part of Informed Consent. The "Consent" Part of Informed Consent. Vulnerable Populations. Medical Research and Medical Therapy. Investigators and Financial Conflict. Placebos and Research. Therapeutic and Nontherapeutic Research. Research Involving Children. Research Involving Prisoners. Research Involving the Poor. Research Involving the Terminally Ill. Research Involving Fetuses. Research Involving Animals. Women and Medical Research. Summary. Ethical Theories: Medical Research, and Informed Consent. Utilitarianism. Kant. Ross. Natural Law. Rawls. READINGS: Section 1: Consent and Experimentation. Stephen Goldby, Saul Krugman, M. H. Pappworth, and Geoffrey Edsall. The Willowbrook Letters: Criticism and Defense. Paul Ramsey, Judgment on Willowbrook. Principles of the Nuremberg Code. National Commission for the Protection of Human Subjects. Belmont Report. Hans Jonas. Philosophical Reflections on Experimenting with Human Subjects. Section 2: The Ethics of Randomized Clinical Trials. Don Marquis. How to Resolve an Ethical Dilemma Concerning Randomized Clinical Trials. Eugene Passamani, Clinical Trials: Are They Ethical? Robert Northcott. How Necessary Are Randomized Controlled Trials? Section 3: Access to Experimental Drugs. Judith Rogers. Majority Opinion in Abigail Alliance v. FDA. Thomas B. Griffith. Dissenting Opinion in Abigail Alliance v. FDA. Section 4: Animal Experimentation. Peter Singer, Animal Experimentation. Carl Cohen, The Case for the Use of Animals in Biomedical Research. DECISION SCENARIOS: 1. Boyd Rush: The First Animal-Human Transplant. 2. Phase I and Consent. 3. Stopping Tamoxifen. 4. Clinical Testing in Foreign Countries. 5. Genuine Consent? 6. When the Numbers are Small, Can a Trial Be Ethical? 7. Using Nazi Data. 8. Primate Head Trauma.
Part II: CONTROLS.
3. Genetics Control.
Cases and Contexts. Case Presentation: Genae Girard and Gene Patents. Case Presentation: Huntington’s Disease-Deadly Disease, Personal Dilemmas. Social Context: Testing for Disease Predisposition-Is it Better Not to Know? Social Context: Predictive Genetic Testing-To Test or Not to Test? Social Context: GINA-Genetic Information Nondiscrimination Act. Social Context: What Are My Chances? Direct-to-Consumer Genetic Testing. Case Presentation: Gene Therapy--Slowly Delivering on the Promise. Social Context: The Human Genome Project--Genes, Diseases, and the Personal Genome. Social Context: Stem Cells: The End of the Battle? BRIEFING SESSION: Genetic Intervention: Screening Counseling and Diagnosis. Genetic Disease. Genetic Screening. Genetic Counseling. Prenatal Genetic Diagnosis. Ethical Difficulties with Genetic Intervention. Eugenics. Negative and Positive Eugenics. Use of Desirable Germ Cells. Ethical Difficulties with Eugenics. Genetic Research, Therapy, and Technology. Recombinant DNA. Gene Therapy. Biohazards. Ethical Difficulties with Genetic Research, Therapy, and Technology. READINGS: Section 1: Dilemmas of Genetic Choice. Jeff McMahan: The Morality of Screening for Disability. Dena S. Davis: Genetic Dilemmas and the Child’s Right to an Open Future. Section 2: Genetic Selection-- A New Eugenics? Julian Savulescu: Procreative Beneficence: Why We Should Select the Best Children. Michael Parker: The Best Possible Child. Section 3: Genetics and Abortion. Jeffrey R. Botkin: Fetal Privacy and Confidentiality. Leon R. Kass: Implications of Prenatal Diagnosis for the Human Right to Life. Section 4: Embryonic Stem Cells-End of the Battle? Insoo Hyun: Stem Cells From Sin Cells: The Ethical Questions. Gerard Magill and William B. Neaves: Ontological and Ethical. Implications of Direct Nuclear Reprogramming. Pontifical Academy for Life: Declaration on the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells. DECISION SCENARIOS: 1. Improving Society One Embryo at a Time. 2. A Child Like Us. 3. Screening for Marriage. 4. A Duty Not to Reproduce? 5. Justified Test? 6. A Duty to Tell or To Remain Silent? 7. Tampering With Human Life? 8. Embryonic Stem Cells.
4. Reproductive Control.
Cases and Contexts. Case Presentation: The Octomom and the McCaughey Septuplets: The Perils of Multiple Pregnancy. Social Context: Shopping the Sperm Supermarket. Social Context: The Price of Eggs: Egg Donors: Rewards, Risks, and Exploitation. Social Context: Advances in Reproductive Cloning. Case Presentation: Louise Brown: The First "Test-Tube Baby." Case Presentation: Savior Sibling. Case Presentation: The Calvert Case: A Gestational Surrogate Changes Her Mind. Social Context: Postmenopausal Motherhood. Case Presentation: Baby M and Mary Beth Whitehead: Surrogate Pregnancy in Court. BRIEFING SESSION: Techniques of Assisted Reproduction. IVF, GIFT, ZIFT, IVC, ULER, PZD, ICSI, DNA Transfer, CD, and lUI. Need and Success Rates. Costs. Drawbacks. Potential Risk to Child. Multiple Births. Embryos, Eggs, and Transplants. Gestational Surrogates and Donor Ova. Criticisms of Assisted Reproduction Practices. Benefits of IVF and Other Forms of Assisted Reproduction. Ethical and Social Difficulties. Incest Potential. Eugenics. Weakening of Family. Attitudes of IVF Children. Cloning and Twinning. Artificial Insemination. The Procedure. Reasons for Seeking Artificial Insemination. Sperm Donors. Issues in Artificial Insemination. Ova Donors. Surrogate Pregnancy. Ethical Theories and Reproductive Control. READINGS: Section I: Assisted Reproduction and the Limits of Autonomy. Howard Minkoff and Jeffrey Ecker. The Octomom and the Fertility Specialists. B. Solberg. Getting Beyond the Welfare of the Child in Assisted Reproduction. Cynthia B. Cohen, ’Give Me Children or I Shall Die!’ New Reproductive Technologies and Harm to Children. Gillian Hanscombe, The Right to Lesbian Parenthood. Congregation for the Doctrine of the Faith. Instruction on Respect for Human Life in its Origin. Section 2: Savior Siblings. David King: Why We Should Not Permit Embryos to Be Selected as Tissue Donors. S. Sheldon and S. Wilkinson: Should Selecting Savior Siblings Be Banned? Section 3: Human Reproductive Cloning. Leon Kass: The Wisdom of Repugnance. Carson Strong: The Ethics of Human Reproductive Cloning. Section 4: Surrogate Pregnancy. Bonnie Steinbock, Surrogate Motherhood as Prenatal Adoption. Elizabeth S. Anderson, Is Women’s Labor a Commodity? DECISION SCENARIOS: 1. Child of a Civil Union. 2. Donor Responsibility. 3. Looking for the Family Tree. 4. Embryo = Person? 5. Allowable Discrimination? 6. The Ambiguous Status of Surrogacy. 7. Just a Matter of Autonomy? 8. Inherently Wrong or Just Impracticable? 9. The Possibility of Impairment.
Part III: TERMINATIONS.
Cases and Contexts. Social Context: The Conflict Begins: Roe v. Wade. Case Presentation: When Abortion was Illegal--Mrs. Sherri Finkbine and the Thalidomide Tragedy. Social Context: A Statistical Profile of Abortion in the United States. Social Context: The Morning-After Pills (Plan B and Ellen)--Emergency Contraception and Politics. Social Context: "The Abortion Pill." Social Context: The "Partial-Birth Abortion" Controversy. Social Context: Supreme Court Abortion Decisions After Roe v. Wade. BRIEFING SESSION: Human Development and Abortion. The Status of the Fetus. Pregnancy, Abortion, and the Rights of Women. Therapeutic Abortion. Abortion and the Law. Ethical Theories and Abortion. READINGS: Section 1: Abortion and the "Deprivation of Futures" Argument. Don Marquis: Why Abortion Is Immoral. Mark T. Brown: The Morality of Abortion and the Deprivation of Futures. Section 2: Abortion and the Status of the Fetus: The Classic Arguments. John T. Noonan, Jr.: An Absolute Value in History. Judith Jarvis Thomson: A Defense of Abortion. Mary Anne Warren: On the Moral and Legal Status of Abortion. Section 3: Emergency Contraception and Professional Responsibilities. Robert F. Card: Conscientious Objection and Emergency Contraception. DECISION SCENARIOS: 1. Emergency Contraception. 2. After the Concert. 3. A Procedure by Another Name. 4. A Pregnant Mental Child. 5. Fetal Reduction. 6. A Family Tragedy. 7. Unexpected News. 8. A Matter of Convenience. 9. Whose Life? 10. Reducing Abortion by Making Abortion Legal?
6. Treating or Terminating: The Dilemma of Impaired Infants.
Cases and Contexts. Case Presentation: The Agony of Bente Hindriks. Social Context: The Dilemma of Extreme Prematurity. Case Presentation: Baby Owens--Down Syndrome and Duodenal Atresia. Social Context: The Baby Doe Cases. Case Presentation: Baby K-- An Anencephalic Infant and a Mother’s Request. BRIEFING SESSION: Genetic and Congenital Impairments. Specific Impairments. Down Syndrome. Spina Bifida. Hydrocephaly. Anencephaly. Esophageal Atresia. Duodenal Atresia. Problems of Extreme Prematurity. Testing for Impairments. Ethical Theories and the Problem of Birth Impairments. Envoi. READINGS: Section 1: The Groningen Protocol. James Lemuel Smith: The Groningen Protocol; The Why and the What. A.B. Jotkowitz and S. Glick: The Groningen Protocol: Another Perspective. Section 2: The Ashely Treatment. Ashley’s Mom and Dad: The "Ashley Treatment." S. Matthew Liao, Julian Savulescu, and Mark Sheehan: The Ashley Treatment: Best Interests, Convenience, and Parental Decision Making. Section 3: The Status of Impaired Infants. John A. Robertson: Examination of Arguments in Favor of Withholding Ordinary Medical Care from Defective Infants. H. Tristram Engelhardt, Jr.: Ethical Issues in Aiding the Death of Young Children. Allison Davis: Right to Life of the Handicapped. DECISION SCENARIOS: 1. Doing the Right Thing? 2. No Food, No Water? 3. Murder or Temporary Insanity? 4. The Messenger Case. 5. Another Ashley? 6. Pointless Suffering?
7. Euthanasia and Assisted Suicide.
Cases and Contexts. Case Presentation: Karen Quinlan--The Debate Begins. Social Context: When the Diagnosis is Death. Case Presentation: Elizabeth Bouvia’s Demand to Starve--Request for Assisted Suicide? Social Context: The Cruzan Case--The Supreme Court Upholds the Right to Die. Case Presentation: Terri Schiavo. Case Presentation: Jack Kevorkian--Moral Leader or Dr. Death? Social Context: Assisted Suicide--The Oregon Experience. Case Presentation: The Awakening-A Brief Miracle. BRIEFING SESSION: Active and Passive Euthanasia. Voluntary, Involuntary, and Nonvoluntary Euthanasia. Defining "Death." Advance Directives. Ethical Theories and Euthanasia. READINGS: Section 1: The Killing-Letting Die Distinction. James Rachels: Active and Passive Euthanasia. Winston Nesbitt: Is Killing No Worse Than Letting Die? Section 2: The Case against Allowing Euthanasia and Assisted Suicide. J. Gay-Williams: The Wrongfulness of Euthanasia. Daniel Callahan: When Self-Determinism Runs Amok. Section 3: The Case for Allowing Euthanasia and Assisted Suicide. John Lachs: When Abstract Moralizing Runs Amok. Peter Singer: Voluntary Euthanasia: A Utilitarian Perspective. Section 4: Deciding for the Incompetent. Supreme Court of New Jersey: In the Matter of Karen Quinlan. DECISION SCENARIOS: 1. The Timothy Quill Case. 2. What Would He Want? 3. The Bartling Case. 4. Angel of Mercy? 5. Dutch Practices.
Part IV: RESOURCES.
8. Organ Transplants and Scarce Medical Resources.
Cases and Contexts. Case Presentation: Did Steve Jobs Cheat? Case Presentation: The Prisoner Who Needed a Heart. Case Presentation: Playing God with Dialysis. Case Presentation: Transplants for the Mentally Impaired? Social Context: Acquiring and Allocating Transplant Organs. Case Presentation: The Drug Lottery--The Betaseron Shortage. BRIEFING SESSION: Transplants, Kidneys, and Machines. Controlling Rejection. Allocation and Scarcity. Seattle and Kidney Machines. Dialysis Costs and Decisions. Microallocation vs. Macroallocation. Ethical Theories and the Allocation of Medical Resources. READINGS: Section 1: Who Deserves Transplant Organs? Jacob M. Appel: Wanted Dead or Alive? Kidney. Transplantation in Inmates Awaiting Execution. Robert M. Sade: The Prisoners’ Dilemma: Should Convicted. Felons Have the Same Access to Health Care as Ordinary Citizens? Carl Cohen et. al., Alcoholics and Liver Transplantation. Section 2: Acquiring Transplant Organs. Ronald Munson: The Donors’ Right to Take a Risk. Janet Radcliffe-Richards, et al.: The Case for Allowing Organ Sales. Kishore D. Phadke and Urmila Anandh: Refuse to Support the Illegal Organ Trade. Aaron Spital and Charles A. Erin: Conscription of Cadaveric Organs. Section 3: Allocation Principles. George J. Annas, The Prostitute, the Playboy, and the Poet. Ezekial J. Emaneuel and Alan Wertheimer: Who Should Get Influenza Vaccine When Not All Can? DECISION SCENARIOS: 1. First-Come, First-Served? 2. Robbing the Dead? 3. Taking a Chance for Love. 4. Buying a Liver. 5. Selling a Kidney. 6. Lifestyle Factors. 7. How Many Livers Are Fair? 8. Who Gets the Ventilators?
9. Distributing Health Care.
Cases and Contexts. Case Presentation: The Way it was--Robert Ingram Can’t Afford to be Sick. Social Context: Affordable Care Act. Social Context: In Crisis Mode--Background to Health Care Reform. BRIEFING SESSION: Recognizing a Need, Not a Right. Claim-Rights, Legal Rights, and Statutory Rights. Moral Rights. Political Rights. Health Care as a Right. Objections. READINGS: Section 1: Right to Health Care. President’s Commission: Ethical Framework for Access to Health Care. H. Tristram Engelhardt, Jr.: Rights to Health Care, Social Justice, and Fairness in the Face of Finitude. Kai Nielsen: Autonomy, Equality, and a Just Health Care System. Section 2: Equality and Health Care. Norman Daniels: Equal Opportunity and Health Care. Gopol Sreenivassan: Health Care and Equality of Opportunity. DECISION SCENARIOS: 1. Insurance Not Required. 2. Liver Transplant. 3. Custodial Care. 4. Not the Best Option.
Part V: CHALLENGES.
10. Women and Medicine.
Cases and Contexts. Case Presentation: Angela Carder’s Ordeal. Social Context: Gender Exceptionalism: Is Men’s Health Being Neglected? Social Context: Mammograms: The Continuing Debate. Social Context: Pregnancy, Drugs, and the Law. BRIEFING SESSION: Women Excluded. Include Women, Study Women. Women-Specific Studies. Equivalent Care. Women Shortchanged. Office of Women’s Health. Office of Men’s Health? Women, Pregnancy, and Society. Outcome. READINGS: Section 1: Women and Pregnancy. John A. Robertson and Joseph D. Schulman: Pregnancy and Prenatal Harm to Offspring. Howard Minkoff and Lynn M. Paltrow: The Rights of "Unborn Children" and the Value of Pregnant Women. Section 2: Gender and Fairness. Aki Tsuchiya and Alan Williams: A ’’Fair Innings" Between the Sexes: Are Men Being Treated Inequitably? American College of Obstetrics and: Research Involving Women Gynecologists. DECISION SCENARIOS: Pregnancy and Clinical Trials. Lumpectomy vs. Mastectomy. A Mammogram to Feel Safe. Prostate Cancer and Fairness. Tabita Bricci is Taken to Court.
11. African Americans and Medicine.
Cases and Contexts. Case Presentation: Bad Blood, Bad Faith--The Tuskegee Syphilis Study. Social Context: Race-Based Medicine? Social Context: Is Health About Status, Not Race? BRIEFING SESSION: Special Claim by African-Americans. African-Americans and Health Care. HIV/AIDS. Black/White Treatment Differences. Why the Gap? The Tuskegee Effect. Clinical Trials. Organ Transplants. Closing the Gap. READINGS: Section 1: Race, Research. and Medicine. Armond Marie Leroi: A Family Tree in Every Gene. Patricia A. King: The Dangers of Difference: Legacy of the Tuskegee Syphilis Study. Section 2: Taking Race into Account. Annette Dula: Toward an African-American Perspective on Bioethics. H. Jack Geiger: The Demise of Affirmative Action and the Future of Health Care. DECISION SCENARIOS: 1. Tuskegee Effect. 2. Racial-Differences Research. 3. Designated Donor by Race. 4. Social Construction. 5. Cultural Competence.
12. Epidemic! AIDS and HIV.
Cases and Contexts. Case Presentation: Darren Chiacchia--Criminal or Victim? Case Presentation: The Way it was--Tod Thompson, Dallas 1984. Social Context: The Nightmare Begins--Discovering AIDS. Social Context: Pandemic--AIDS Worldwide. Social Context: Testing AIDS Drugs in the Third World. Social Context: Origin of the AIDS Virus. Social Context: Searching for the AIDS Vaccine. BRIEFING SESSION: AIDS/HIV: The Disease and the Virus. HIV Tests. AIDS at Bay. Potential for New Drug. U.S. Epidemic in Profile. Death Rate. Infection Rates. Protease Inhibitors and HAART. Treatment Limits. Costs. READINGS: Section 1: Confidentiality and Responsibility. Elliot D. Cohen: Lethal Sex: Conditions of Disclosure in Counseling Sexually Active Clients with HIV. Bernard Rabinowitz: The Great Hijack. Section 2: AIDS Trials in Africa. George 1. Annas and Michael A Grodin: Human Rights and Maternal-Fetal HIV Transmission Prevention Trials in Africa. Danstan Bagenda and Philla Musoke-Mudido: We’re Trying to Help Our Sickest People, Not Exploit Them.
DECISION SCENARIOS: 1. Duty to Warn. 2. Duty to Violate Confidentiality? 3. Mandatory Testing, Mandatory Treatment? 4. Registering the HIV-Positive. 5. Cultures in Conflict. 6. Tuskegee in the Congo?
Part VI: FOUNDATIONS OF BIOETHICS: ETHICAL THEORIES, MORAL PRINCIPLES, AND MEDICAL DECISIONS.
13. Basic Ethical Theories.
Utilitarianism. The Principle of Utility. Act and Rule Utilitarianism. Preference Utilitarianism. Difficulties with Utilitarianism. Kant’s Ethics. The Categorical Imperative. Another Formulation. Duty. Kant’s Ethics in the Medical Context. Difficulties with Kantian Ethics. Ross’s Ethics. Moral Properties and Rules. Actual Duties and Prima Facie Duties. Ross’s Ethics in the Medical Context. Difficulties with Ross’s Moral Rules. Rawls’s Theory of Justice. The Original Position and the Principles of Justice. Rawls’s Theory of Justice in the Medical. Context. Difficulties with Rawls’s Theory. Natural Law Ethics and Moral Theology. Purposes, Reasons, and the Moral Law as Interpreted by Roman Catholicism. Applications of Roman Catholic Moral-Theological Viewpoints in the Medical Context. Difficulties with Natural Law Ethics and Moral Theology.
14. Major Moral Principles.
The Principle of Nonmaleficence. The Principle of Beneficence. The Principle of Utility. Principles of Distributive Justice. The Principle of Equality. The Principle of Need. The Principle of Contribution. The Principle of Effort. The Principle of Autonomy. Autonomy and Actions. Autonomy and Options. Autonomy and Decision Making. Restrictions on Autonomy.
Theories Without Principles.
Virtue Ethics. The Virtues. Virtue Ethics in the Medical Context. Difficulties with Virtue Ethics. Care Ethics. Values, Not Principles. Care Ethics in the Medical Context. Difficulties with Care Ethics. Feminist Ethics. Feminist Ethics in the Medical Context. Difficulties with Feminist Ethics. Retrospect.