Bioethics in a Changing World

Chapter 1 THEORIES AND VALUES IN BIOETHICS What is Bioethics?Moral Theories and Biomedical EthicsThe “Four Principles” Approach to Biomedical EthicsAddressing Multiculturalism in MedicineAccounting for Religion in BioethicsConclusionChapter 2 ROLES, RESPONSIBILITIES, AND RELATIONSHIPS Cortney Davis, “What the Nurse Likes”Jack Coulehan, “Irene”Case Study: Carmen Diaz’s SurgeryRoles and RelationshipsResponsibilities and RelationshipsLooking AheadREADINGS:Physician Cathy Charles, Amiram Gafni, and Tim Whelan, “Decision-making in the Physician—Patient Encounter: Revisiting the SharedTreatment Decision-making Model” Abraham Verghese, “The Calling”Nurse Ellen W. Bernal, “The Nurse as Patient Advocate” Chris MacDonald, “Nurse Autonomy as Relational”Genetic Counselor Arthur L. Caplan, “Neutrality Is Not Morality: The Ethics of Genetic Counseling” Jon Weil, “Psychosocial Genetic Counseling in the Post-Nondirective Era: A Point of View”Confidentiality Mark Siegler, “Confidentiality in Medicine–A Decrepit Concept” Jeanette Ives Erickson and Sally Millar, “Caring for Patients while Respecting Their Privacy: Renewing our Commitment”Truth-Telling Rachel M. Werner, et al., “Lying to Insurance Companies: The Desire to Deceive among Physicians and the Public” Anthony L. Back, Robert M. Arnold, and Timothy E. Quill, “Hope for the Best, and Prepare for the Worst”Informed Consent Howard Brody, “Transparency: Informed Consent in Primary Care” Mark G. Kuczewski, “Reconceiving the Family: The Process of Consent in Medical Decisionmaking” Farhat Moazam, “Families, Patients, and Physicians in Medical Decisionmaking: A Pakistani Perspective”Chapter 3 JUSTICE AND HEALTH CARE Ray Moynihan,“US Seniors Group Attacks Pharmaceutical Industry ‘Fronts’”Case Study: The Problem That Won’t Go AwayThe Rise of Employment-Based Health Insurance in the United StatesCanada’s System of Universal Health CareThe Clinton Plan: A Failed Attempt at Universal Health CareHealth Care for Illegal Immigrants?The Pharmaceutical IndustryLooking AheadREADINGS:Issues in Access to Health Care Norman Daniels, “A Lifespan Approach to Health Care” Ezekiel Emanuel, “Health Care Reform: Still Possible” Gopal Sreenivasan, “Health Care and Equality of Opportunity”The Ethics of Managed Care Sara Rosenbaum and Brian Kamoie, “Managed Care and Public Health: Conflict and Collaboration” Daniel Callahan, “Managed Care and the Goals of Medicine” E. Haavi Morreim, “Lifestyles of the Risky and Infamous” Julia Abelson, et al. “Canadians Confront Health Care Reform”Immigrants James Dwyer, “Illegal Immigrants, Health Care, and Social Responsibility” Jeffrey T. Kullgren, “Restrictions on Undocumented Immigrants’ Access to Health Services: The Public Health Implications ofWelfare Reform” Leighton Ku and Sheetal Matani, “Left Out: Immigrants’ Access to Health Care and Insurance”The Pharmaceutical Industry Nathan Newman, “Big Pharma, Bad Science” Kimberly Kaphingst and William DeJong, “The Educational Potential Of Direct-To-Consumer Prescription Drug Advertising” Jillian Clare Cohen, “Pushing the Borders: The Moral Dilemma of International Internet Pharmacies”Chapter 4 EXPERIMENTATION AND RESEARCH ON HUMAN SUBJECTS “Pfizer Faces Criminal Charges in Nigeria”Case Study: Tobias, The Research Subject?Common Characteristics of Cases of Clinical Research on HumansHistory and GuidelinesContemporary TermsLooking AheadREADINGS:Clinical Research and Medicine Eric J. Cassell, “The Principles of the Belmont Report Revisited: How Have Respect for Persons, Beneficence, and Justice BeenApplied to Clinical Medicine?” Franklin G. Miller and Howard Brody, “A Critique of Clinical Equipoise: Therapeutic Misconception in the Ethics of Clinical Trials” Rosamond Rhodes, “Rethinking Research Ethics”Developing Countries Ogobara K. Doumbo, “It Takes a Village: Medical Research and Ethics in Mali” Deborah Zion, “HIV/AIDS Clinical Research, and the Claims of Beneficence, Justice, and Integrity” The Participants in the 2001 Conference on Ethical Aspects of Research in Developing Countries, “Moral Standards forResearch in Developing Countries:From ‘Reasonable Availability’ to ‘Fair Benefits’”Vulnerable Populations Paul Ramsey, “The Patient as Person: Explorations in Medical Ethics” Patricia A. King, “The Dangers of Difference” Allen Buchanan, “Judging the Past” David Wendler, et al., “The Ethics of Paying for Children’s Participation in Research”Clinical Trials Samuel Hellman and Deborah S. Hellman, “Of Mice But Not Men: Problems of the Randomized Clinical Trial” Sara Goering, “Women and Underserved Populations: Access to Clinical Trials”Chapter 5 HEALTH, NORMALCY, AND THE “ABNORMAL” PATIENT Not Dead Yet, “Action Alert: September 3rd is ‘Blog Against the Telethon’ Day”Case Study: A Child’s Right to an Open Future?The Constraint of Social NormsThe Social versus the Medical Model of DisabilityAltering the Body: Tensions between Autonomy and NonmaleficenceLooking AheadREADINGS:Health and Normalcy Christopher Boorse, “On the Distinction Between Disease and Illness” Susan Wendell, “Who is Disabled? Defining Disability”Hearing Harlan Lane and Michael Grodin, “Ethical Issues in Cochlear Implant Surgery: An Exploration into Disease, Disability, andthe Best Interests of the Child,” Dena S. Davis, “Cochlear Implants and the Claims of Culture? A Response to Lane and Grodin”The Body Alice Domurat Dreger, “Ambiguous Sex” or Ambivalent Medicine? S. Matthew Liao, Julian Savulescu, and Mark Sheehan, “The Ashley Treatment: Best Interests, Convenience, and ParentalDecision-Making” Leslie Cannold, “The Ethics of Neonatal Male Circumcision: Helping Parents to Decide” Rosemarie Tong and Hilde Lindemann, “Beauty Under the Knife: A Feminist Appraisal of Cosmetic Surgery” Marion Nestle, “Food Marketing and Childhood Obesity – A Matter of Policy”Sexual Identity Jennifer E. Potter, “Do Ask, Do Tell” Heather Draper and Neil Evans, “Transsexualism and Gender Reassignment Surgery”Mental Health Care Peter Whitty and Pat Devitt, “Surréptitious Prescribing in Psychiatric Practice”Chapter 6 BEGINNING OF LIFE Excerpt from Ron’s Angels WebsiteCase Study: The Problem of Multiple EmbryosAbortionThe Moral Status of the Embryo/FetusAssisted Reproductive TechnologiesLooking AheadREADINGS:Abortion Don Marquis, “Why Abortion is Immoral” Judith Jarvis Thomson, “A Defense of Abortion” Mary Anne Warren, “On the Moral and Legal Status of Abortion” Margaret Olivia Little, “Abortion, Intimacy, and the Duty to Gestate”Ethical Dilemmas in the Care of Pregnant Women Dorothy E. Roberts, “Punishing Drug Addicts Who Have Babies: Women of Color, Equality, and the Right of Privacy” Howard Minkhoff and Lynn M. Paltrow, “The Rights of ‘Unborn Children’ and the Value of Pregnant Women” Marleen Temmerman, Jackoniah Ndinya-Achola, “The Right Not to Know HIV-Test Results”Medical Control of Pregnancy and Childbirth R.B. Kalish, L.B. McCullough, and F.A. Chervenak, “Decision-Making about Caesarean Delivery” Laura Purdy, “Women’s Reproductive Autonomy: Medicalisation and Beyond” Mary Ann Wilder, “Ethical Issues in the Delivery Room: Resuscitation of Extremely Low Birth Weight Infants”Assisted Reproductive Technologies Bonnie Steinbock, “Payment for Egg Donation and Surrogacy” Victoria Seavilleklein and Susan Sherwin, “The Myth of the Gendered Chromosome: Sex Selection and the Social Interest” Jacob M. Appel, “May Doctors Refuse Infertility Treatments to Gay Patients?” Hawley Fogg-Davis, “Navigating Race in the Market for Human Gametes” Liza Mundy, “Souls on Ice: America’s Human Embryo Glut and the Unbearable Lightness of Almost Being”Chapter 7 GENETIC TECHNOLOGIES “Bulls Ship Curry to Knicks”Case Study: Gloria’s DecisionGeneticsGenetic Technologies: For Whom?Genetic Technologies: Why?Genetic Technologies: What?Looking AheadREADINGS:Testing and Screening Dena S. Davis, “Genetic Dilemmas and the Child’s Right to an Open Future” Laura M. Purdy, “Genetics and Reproductive Risk: Can Having Children Be Immoral?” Bonnie Steinbock, “Using Preimplantation Genetic Diagnosis to Save a Sibling: The Story of Molly and Adam Nash” R.E. Duncan and M.B. Delatycki, “Predictive Genetic Testing in Young People for Adult-Onset Conditions: Where is theEmpirical Evidence?”Genetic Knowledge R. Andorno, “The Right not to Know: An Autonomy Based Approach” Rosamond Rhodes, “Genetic Links, Family Ties, and Social Bonds: Rights and Responsibilities in the Face ofGenetic Knowledge” Kathy L. Hudson, M.K. Holohan, and Francis S. Collins, “Keeping Pace with the Times–The Genetic InformationNondiscrimination Act of 2008”Therapy and Enhancement Jonathan Glover, “Questions about Some Uses of Genetic Engineering” Sheldon Krimsky, “Gene Therapy: What has been Achieved After 25 Years? Successes and Failures in a New Field of Medicine” Carl Elliott, “Enhancement Technologies and Identity Ethics” Christen Brownlee, “Gene Doping: Will Athletes Go for the Ultimate High?”Stem Cells Pontifical Academy for Life, “Declaration on the Production and the Scientific and Therapeutic Use of Human EmbryonicStem Cells” Louis M. Guenin, “Morals and Primordials” Bonnie Steinbock, “Alternative Sources of Stem Cells”Human Cloning Leon R. Kass, “Cloning of Human Beings” C. Strong, “Reproductive Cloning Combined with Genetic Modification”Chapter 8 ORGAN DONATION AND TRANSPLANTATION Robert N. Test, “To Remember Me”Case Study: Wilfred’s DilemmaScarcity of ResourcesAcquiring OrgansAllocating OrgansLooking AheadREADINGS:Scarcity and Allocation Nicholas Rescher, “The Allocation of Exotic Medical Lifesaving Therapy” James F. Childress, “Ethics and the Allocation of Organs for Transplantation” James Lindemann Nelson, “Measured Fairness, Situated Justice: Feminist Reflections on Health Care Rationing”Acquiring Organs R.S. Gaston, et al., “Limiting Financial Disincentives in Live Organ Donation: A Rational Solution to the Kidney Shortage” David Steinberg, “An ‘Opting In’ Paradigm for Kidney Transplantation” Aaron Spital and Charles A. Erin, “Conscription of Cadaveric Organs for Transplantation: Let’s at Least Talk About It” Renée C. Fox, “‘An Ignoble Form of Cannibalism’: Reflections on the Pittsburgh Protocol for Procuring Organs fromNon-Heart-Beating Cadavers”Living Donors Robert D. Truog, “The Ethics of Organ Donation by Living Donors” Arthur Caplan, “Organs.com: New Commercially Brokered Organ Transfers Raise Questions” Lynn A. Jansen, “Child Organ Donation, Family Autonomy, and Intimate Attachments”Allocating Organs George J. Annas, “The Prostitute, the Playboy, and the Poet: Rationing Schemes for Organ Transplantation” Elisa J. Gordon, “What ‘Race’ Cannot Tell Us about Access to Kidney Transplantation” T. M. Wilkinson, “Racist Organ Donors and Saving Lives” Daniel Brudney, “Are Alcoholics Less Deserving of Liver Transplants?” Judith Graham, “Should Age Determine Who Gets a Kidney Transplant?”Chapter 9 AGING Philip Larkin, “The Old Fools”Case Study: An Affair of the DementedAging and the Goals of MedicineCaregiving for Older Adults and the Exploitation of Women’sCare WorkAutonomy and Long-Term CareLooking AheadREADINGS:Aging and the Ends of Medicine Daniel Callahan, “Limiting Health Care for the Old” Nora K. Bell, “What Setting Limits May Mean: A Feminist Critique of Daniel Callahan's Setting Limits”Ethical Issues in Long Term Care George J. Agich, “Reassessing Autonomy in Long-Term Care” Martha Holstein, “Home Care, Women, and Aging: A Case Study of Injustice” Sik Hung Ng, “Will Families Support Their Elders? Answers from Across Cultures” John Hardwig, “Elder Abuse, Ethics, and Context”Ethics and Alzheimer’s Disease Ronald Dworkin, “Life Past Reason” Rebecca Dresser, “Dworkin on Dementia: Elegant Theory, Questionable Policy”Ethical Perspectives on Life Extension Arthur L. Caplan, “An Unnatural Process: Why it is not Inherently Wrong to Seek a Cure for Aging” Leon R. Kass, “Why not Immortality?” Christine Overall, “Longevity, Identity, and Moral Character: A Feminist Approach”Chapter 10 ISSUES AT END OF LIFE David Jay Brown, “A Compassionate Ending: An Interview with Dr. Jack Kevorkian”Case Study: Death with DignityDefinitions and TerminologyThe Case of Karen Ann QuinlanDr. Jack Kevorkian’s Practice of Physician-Assisted SuicideThe Case of Terri SchiavoLooking AheadREADINGS:End of Life Decisions for the Vulnerable and Incompetent Loretta M. Kopelman, “Rejecting the Baby Doe Rules and Defending a ‘Negative’ Analysis of the Best Interests Standard” Timothy E. Quill, “Terri Schiavo–A Tragedy Compounded” Mary Johnson, “After Terri Schiavo: Why the Disability Rights Movement Spoke Out, Why Some of Us Worried, and WhereDo We Go from Here?”The Dying Process Annette Dula and September Williams, “When Race Matters” Barbara A. Koenig and Jan Gates-Williams, “Understanding Cultural Difference in Caring for Dying Patients” John Hardwig, “Is There a Duty to Die?” Bruce Jennings, True Ryndes, Carol D’Onofrio, and Mary Ann Baily, “Access to Hospice Care: Expanding Boundaries,Overcoming Barriers”Active and Passive Euthanasia J. Gay-Williams, “The Wrongfulness of Euthanasia” James Rachels, “Active and Passive Euthanasia” Tom L. Beauchamp and James F. Childress, “Rachels on Active and Passive Euthanasia” Daniel Callahan, “When Self-Determination Runs Amok” John Lachs, “When Abstract Moralizing Runs Amok”Physician-Assisted Suicide Timothy E. Quill, “Death and Dignity: A Case of Individualized Decision Making” Felicia Ackerman, “Assisted Suicide, Terminal Illness, Severe Disability, and the Double Standard” Jennifer A. Parks, “Why Gender Matters to the Euthanasia Debate: On Decisional Capacity and the Rejection ofWomen’s Death Requests” Patricia A. King and Leslie E. Wolf, “Lessons for Physician-Assisted Suicide from the African-American Experience”Chapter 11 FUTURE DIRECTIONS IN BIOETHICS Thucydides, Peloponnesian War (excerpt)Paul the Deacon, History of the Lombards (excerpt)Case Study: Meg’s NightmareBioethics PrioritiesResponses to Pandemics and DisastersConscription of Health Care ProvidersThe Future of BioethicsREADINGS:Bioethics Priorities Ruth Macklin, “Bioethics and Public Policy in the Next Millennium: Presidential Address” Renée C. Fox and Judith P. Swazey, “Examining American Bioethics: Its Problems and Prospects”Responses to Pandemics and Bioterrorism The Hastings Center, “Flu Pandemic and the Fair Allocation of Scarce Life-Saving Resources: How Can We Make theHardest of Choices?” Karine Morin, Daniel Higginson, and Michael Goldrich for the Council on Ethical and Judicial Affairs of the American Medical Association, “Physician Obligation in Disaster Preparedness and Response”GlossaryCases