Intervention and reflection Book

Part I: RIGHTS. 1. Research Ethics and Informed Consent. Classic Case Presentation: Jesse Gelsinger: The First Gene-Therapy Death. Briefing Session. Drug Testing. The "Informed" Part of Informed Consent. The "Consent" Part of Informed Consent. Medical Research and Medical Therapy. Financial Conflict of Interest. 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. Case Presentation: Baby Fae. Social Context: Clinical Trials, HIV, and Pregnancy: A Third-World Tuskegee? 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. Readings. Section 1: Consent and Experimentation. Matthew Miller: Phase I Cancer Trials: A Collusion of Misunderstanding. Hans Jonas: Philosophical Reflections on Experimenting with Human Subjects. Stephen Goldby, Saul Krugman, M.H. Pappworth, and Geoffrey Edsall: The Willowbrook Letters: Criticism and Defense. Paul Ramsey: Judgment on Willowbrook. 2. Physicians, Patients, and Others: Autonomy, Truth Telling, and Confidentiality. Classic Case Presentation: Donald (Dax) Cowart Rejects Treatment - and Is Ignored. 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. Federal Privacy Regulations. Ethical Theories: Autonomy, Truth Telling, Confidentality. Case Presentation: Medical ID Cards and Privacy. Social Context: Autonomy and Pregnancy. Case Presentation: The Death of Robyn Twitchell and Christian Science. Readings. Section 1: Consent to Medical Treatment. Gerald Dworkin: Paternalism. Dax Cowart and Robert Burt: Confronting Death: Who Chooses, Who Controls? A Dialogue. Howard Brody: Transparency: Informed Consent in Primary Care. Section 2: Autonomy and Pregnancy. Alexander Morgan Capron: Punishing Mothers. John A. Robertson and Joseph D. Schulman: Pregnancy and Prenatal Harm to Offspring. Section 3: Truth Telling. Mack Lipkin: On Telling Patients the Truth. Susan Cullen and Margaret Klein: Respect for Patients, Physicians, and the Truth. Section 4: Confidentiality. Mark Siegler: Confidentiality in Medicine—A Decrepit Concept. Supreme Court of California: Decision in the Tarasoff Case. Decision Scenarios. 3. HIV/AIDS. Classic Case Presentation: The Way It Was: Tod Thompson, Dallas, 1993-1994. Briefing Session. Combination Therapy: AIDS on the Run. Decline in Death Rate. Infection Rates. Protease Inhibitors and Combination Drug Therapy. Limits of the Therapy. Best with New Infections. Drug Resistance. Virus Remains. Costs. Side Effects. Difficult Regimen. False Security. Origin of the Aids Virus. Spread of the Disease. Children. Deaths. The Future. Case Presentation: Will Teresa Blair Take Her Medicine? Social Context: What About A Vaccine? Social Context: AIDS in Africa: What Should Be Done? Readings. Section 1: Responsibility and Confidentiality. Alan J. Mayer: The Irresponsibility that Spreads AIDS. Bernard Rabinowitz: The Great Hijack. Daniel Saturn: Controlling AIDS/HIV Forever: Guidelines for Using Protease Inhibitors. Section 2: HIV Testing. Bob Hunter and Jay Angoff: Insurers Are Right on AIDS Testing. William C. Gifford III: An Insidious Test for AIDS. Section 3: AIDS Trials in Africa. George J. Annas and Michael A. Grodin: Human Rights and Maternal-Fetal HIV Transmission. Prevention Trials in Africa. Danstan Bagenda and Philippa Musoke-Mudido: We're Trying to Help Our Sickest People, Not Exploit Them. Decision Scenarios. 4. Race, Gender, and Medicine. Classic Case Presentation: Bad Blood, Bad Faith: The Tuskegee Syphilis Study. Briefing Session. African Americans and Health Care. Programs Haven't Eliminated the Difference. Why the Gap? The Tuskegee Effect. AIDS. Clinical Trials. Children's Health. Organ Transplants. Closing the Gap. American Indians and Alaska Natives and Health Care. Indian Health Service. Causes of Death. Summary. Asian and Pacific Islanders and Health Care. Health Profile. Summary. Hispanic Americans/Latinos and Health Care. Health Profile. Recent Changes. Women and Health Care. Include Women, Study Women. Additional Support. Positive Changes. Backlash or Balance? Conclusion. Case Presentation: Lee Lor: Caught in a Culture Conflict. Social Context: The Mammography Debate. Social Context: The Prostate Cancer Epidemic. Readings. Section 1: Perspectives on Gender and Race. Susan Sherwin: Gender, Race, and Class in the Delivery of Health Care. Annette Dula: Bioethics: The Need for a Dialogue with African Americans. Section 2: Conducting Research. Sara Goering: Women and Underserved Populations: Access to Clinical Trials. Patricia A. King: The Dangers of Difference: The Legacy of the Tuskegee Syphilis Study. Section 3: Setting Public Policy. H. Jack Geiger: The Demise of Affirmative Action and the Future of Health Care. Kenneth De Ville: Parties to the Social Contract? Justice and Health Care for Undocumented. Immigrants. Decision Scenarios. Part II: CONTROLS. 5. Genetic Control. Classic Case Presentation: The Stem-Cell Debate. Briefing Session. Genetic Intervention: Screening, Counseling, and Diagnosis. 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. Social Context: The Holy Grail of Biology: The Human Genome Project. Case Presentation: Huntington's Disease: Genetic Testing and Ethical Dilemmas. Social Context: Genetic Testing and Screening. Case Presentation: Gene Therapy. Readings. Section 1: Stem Cells. President's Council on Bioethics: Cloning and Stem Cells. Pontifical Academy for Life: Declaration on the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells. James Q. Wilson: Regulated Cloning for Biomedical Research. Section 2: Genetic Testing. Ruth Hubbard and R.C. Lewontin: Pitfalls of Genetic Testing. Robert Wachbroit: Disowning Knowledge: Issues in Genetic Testing. Section 3: Genetic Counseling. Dena S. Davis: Genetic Dilemmas and the Child's Right to an Open Future. Section 4: Genetic Testing and Reproductive Decisions. Laura M. Purdy: Genetics and Reproductive Risk: Can Having Children be Immoral? Leon R. Kass: Implications of Prenatal Diagnosis for the Human Right to Life. Section 5: Gene Therapy. Ronald Munson and Lawrence H. Davis: Germ-Line Therapy and the Medical Imperative. Decision Scenarios. 6. Reproductive Control. Classic Case Presentation: Hello, Dolly: The Advent of Reproductive Cloning. Briefing Session. IVF, GIFT, ZIFT, and Other Techniques. IVF. GIFT, ZIFT, IVC, ULER, PZD, ICSI, DNA Transfer, and CD. Need, Success Rates, and Costs of Assisted Reproduction. Multiple Births. Freezing Embryos. Gestational Surrogates and Donor Ova. Criticisms of Assisted Reproduction Practices. Benefits of IVF and Other Forms of Assisted Reproduction. Ethical and Social Difficulties. Cloning and Twinning. Artificial Insemination. The Procedure. Reasons for Seeking Artificial Insemination. Types of Artificial Insemination. Sperm Donors. Issues in Artificial Insemination. Ova Donors. Surrogate Pregnancy. Ethical Theories and Reproductive Control. Case Presentation: Louise Brown: The First "Test-Tube" Baby. Case Presentation: Septuplets: The Perils of Multiple Pregnancies. Social Context: Post-Menopausal Motherhood. Social Context: Father Shopping: Sperm by Mail. Case Presentation: Baby M and Mary Beth Whitehead: Surrogate Pregnancy in Court. Case Presentation: The Calvert Case: A Gestational Surrogate Changes Her Mind. Readings. Section 1. Congregation for the Doctrine of Faith: Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation: Replies to Certain Questions of the Day. Gillian Hanscombe: The Right to Lesbian Parenthood. Cynthia B. Cohen: "Give Me Children or I Shall Die!" New Reproductive Technologies and Harm to Children. Arlene Judith Klotzko: Medical Miracle or Medical Mischief? The Saga of the McCaughey Septuplets. Section 2: Surrogate Pregnancy. Bonnie Steinbock: Surrogate Motherhood as Prenatal Adoption. Elizabeth S. Anderson: Is Women's Labor a Commodity? Section 3: Human Cloning. Leon R. Kass: The Wisdom of Repugnance. National Bioethics Advisory Commission: Cloning Human Beings: Ethical Considerations. Decision Scenarios. Part III: RESOURCES. 7. Scarce Medical Resources. Classic Case Presentation: Selection Committee for Dialysis. Briefing Session. Transplants, Kidneys, and Machines. Controlling Rejection. Allocation and Scarcity. Seattle and Kidney Machines. Dialysis Costs and Decisions. Microallocation versus Macroallocation. Ethical Theories and the Allocation of Medical Resources. Social Context: Acquiring and Allocating Transplant Organs. Case Presentation: Sandra Jensen Gets an Implant. Social Context: Fetal-Cell Implants. Case Presentation: The Ayalas' Solution: Having a Child to Save a Life. Case Presentation: Drug Lottery: The Betaseron Shortage. Readings. Section 1: Allocation Principles. Nicholas Rescher: The Allocation of Exotic Medical Lifesaving Therapy. Section 2: Acquiring Transplant Organs. Ronald Munson: The Donor's Right to Take a Risk. Aaron Spital and Charles A. Erin: Conscription of Cadaveric Organs for Transplantation: Let's At Least Talk About It. Michael Kinsley: Take My Kidney, Please. Kishore D. Phadke and Urmila Anandh: Ethics of Paid Organ Donation. Section 3: Allocating Transplant Organs. George J. Annas: The Prostitute, the Playboy, and the Poet: Rationing Schemes for Organ Transplantation. Carl Cohen, Martin Benjamin, and the Ethics and Social Impact Committee of the Transplant and Health Policy Center, Ann Arbor, Michigan: Alcoholics and Liver Tranplantation. Decision Scenarios. 8. Paying for Health Care. Classic Case Presentation: Robert Ingram: Dilemma of the Working Poor. Briefing Session. Claim-Rights, Legal Rights, and Statutory Rights. Moral Rights. Political Rights. Health Care as a Right. Objections. Social Context: Costs of Care. Social Context: Solving the Problem? Case Presentation: The Canadian System as a Model for the United States? Case Presentation: Employer-Mandated Health Insurance: The Hawaiian Example. Readings. Section 1: Justice and Health Care. President's Commission for the Study of Ethical Problems in Medicine: An Ethical Framework for Access to Health Care. Allen E. Buchanan: The Right to a Decent Minimum of Health Care. Section 2: Managed Care and Rationing. Marcia Angell: The Doctor as Double Agent. Uwe E. Reinhardt: Wanted: A Clearly Articulated Social Ethic for American Health Care. Section 3: Alternatives to the Present System. Marcia Angell: The Forgotten Domestic Crisis. Victor Dirnfeld: The Benefits of Privatization. Decision Scenarios. Part IV: TERMINATIONS. 9. Abortion. Classic Case Presentation: When Abortion Was Illegal: Mrs. Sherri Finkbine and the Thalidomide Tragedy. 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. Social Context: How Americans View Abortion: Tolerant Ambivalence. Social Context: The "Partial-Birth Abortion" Controversy. Social Context: Crucial Legal and Policy Decisions. Social Context: RU-486—The "Abortion Pill". Social Context: The "Morning-After Pill". Readings. Section 1: The Status of the Fetus. John T. Noonan Jr.: An Almost Absolute Value in History. Judith Jarvis Thomson: A Defense of Abortion. Mary Anne Warren: On the moral and Legal Status of Abortion. Don Marquis: Why Abortion Is Immoral. Mark T. Brown: The Morality of Abortion and the Deprivation of Futures. Section 2: Feminist Perspectives. Susan Sherwin: Abortion Through a Feminist Ethic Lens. Sidney Callahan: A Case for Pro-Life Feminism. Section 3: Late-Term Abortion. Peter Alward: Thomson, the Right to Life, and Partial-Birth Abortion. Decision Scenarios. 10. Impaired Infants and Medical Futility. Classic Case Presentation: Baby Owens: Down Syndrome and Duodenal Atresia. 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. Social Context: The Dilemma of Extreme Prematurity. Social Context: The Baby Doe Cases. Case Presentation: Baby K: An Anencephalic Infant and a Mother's Request. Readings. Section 1: 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. Robert F. Weir: Life-and-Death Decisions in the Midst of Uncertainty. Section 2: Other Perspectives. Michael L. Gross: Avoiding Anomalous Newborns. Section 3: Medical Futility. Nancy S. Jecker and Roberta A. Pagon: Medical Futility. Norman C. Fost: Medical Futility: A Commentary. Decision Scenarios. 11. Euthanasia and Physician-Assisted Suicide. Classic Case Presentation: Karen Quinlan: The Debate Begins. Briefing Session. Active and Passive Euthanasia. Voluntary, Involuntary, and Nonvoluntary Euthanasia. Defining Death. Advance Directives. Ethical Theories and Euthanasia. Social Context: The Physician-Assisted Suicide Law in Oregon. Case Presentation: The Cruzan Case: The Supreme Court Upholds the Right to Die in a Landmark Decision. Case Presentation: Dr. Jack Kevorkian: Physician-Assisted Suicide Activist. Case Presentation: A Canadian Tragedy. Social Context: Physician-Assisted Suicide: The Dutch Experience. Readings. Section 1: The Case Against Euthanasia and Physician-Assisted Suicide. J. Gay-Williams: The Wrongfulness of Euthanasia. Daniel Callahan: When Self-Determination Runs Amok. Section 2: The Case for Euthanasia and Physician-Assisted Suicide. John Lachs: When Abstract Moralizing Runs Amok. James Rachels: Active and Passive Euthanasia. Dan W. Brock: Voluntary Active Euthanasia. Section 3: Alternatives. Lonnie R. Bristow for the American Medical Association: Physician-Assisted Suicide. Sandol Stoddard: Terminal, but Not Hopeless. Section 4: Deciding for the Incompetent. Supreme Court of New Jersey: In the Matter of Karen Quinlan, an Alleged Incompetent. Decision Scenarios. Part V: FOUNDATIONS OF BIOETHICS: ETHICAL THEORIES, MORAL PRINCIPLES, AND MEDICAL DECISIONS. Basic Ethical Theories. Utilitarianism. The Principle of Unity. 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' Ethics. Moral Properties and Rules. Actual Duties and Prima Facie Duties. Ross' Ethics in the Medical Context. Difficulties with Ross' Moral Rules. Rawls' Theory of Justice. The Original Position and the Principles of Justice. Rawls' Theory of Justice in the Medical Context. Difficulties with Rawls' Theory. Natural Law Ethics and Moral Theology. Purposes, Reasons, and the Moral Law as Interpreted by Roman Catholocism. Applications of Roman Catholic Moral-Theological Viewpoints in the Medical Context. Difficulties with Natural Law Ethics and Moral Theology. 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. Notes and References.