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Medical Ethics Accounts of Ground-Breaking Cases EIGHTH EDITION Gregory E

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Medical Ethics Accounts of Ground-Breaking Cases EIGHTH EDITION Gregory E. Pence University of Alabama at Birmingham MEDICAL ETHICS: ACCOUNTS OF GROUND-BREAKING CASES, EIGHTH EDITION Published by McGraw-Hill Education, 2 Penn Plaza, New York, NY 10121. Copyright © 2017 by McGraw-Hill Education. All rights reserved. Printed in the United States of America. Previous editions © 2015, 2011, and 2008. No part of this publication may be reproduced or distributed in any form or by any means, or stored in a database or retrieval system, without the prior written consent of McGraw-Hill Education, including, but not limited to, in any network or other electronic storage or transmission, or broadcast for distance learning. Some ancillaries, including electronic and print components, may not be available to customers outside the United States. This book is printed on acid-free paper. 1 2 3 4 5 6 7 8 9 0 DOC 21 20 19 18 17 16 ISBN 978-1-259-90794-4 MHID 1-259-90794-5 Chief Product Officer, SVP Products & Markets: G. Scott Virkler Vice President, General Manager, Products & Markets: Michael Ryan Vice President, Content Design & Delivery: Kimberly Meriwether David Managing Director: David Patterson Brand Manager: Jamie Laferrera Director, Product Development: Meghan Campbell Product Developer: Anthony McHugh Marketing Manager: Meredith Leo Director, Content Design & Delivery: Terri Schiesl Program Manager: Jennifer Shekleton Content Project Managers: Jeni McAtee, Jodi Banowetz Buyer: Susan K. Culbertson Content Licensing Specialist: Melisa Seegmiller Cover Image: ERproductions Ltd/Blend Images LLC Compositor: Lumina Datamatics Printer: R.R. Donnelley All credits appearing on page or at the end of the book are considered to be an extension of the ­copyright page. Library of Congress Cataloging-in-Publication Data Names: Pence, Gregory E., author. Title: Medical ethics: accounts of ground-breaking cases / Gregory E. Pence, University of Alabama at Birmingham. Other titles: Classic cases in medical ethics Description: Eighth edition. | New York, NY: MHE, [2017] | Audience: Age: 18+ | Editions 1-5 published under: Classis cases in medical ethics. | Includes bibliographical references and index. Identifiers: LCCN 2016026704 | ISBN 9781259907944 (alk. paper) Subjects: LCSH: Medical ethics--Case studies. Classification: LCC R724 .P36 2017 | DDC 174/.2--dc23 LC record available at https://lccn.loc.gov/2016026704 The Internet addresses listed in the text were accurate at the time of publication. The inclusion of a website does not indicate an endorsement by the authors or McGraw-Hill Education, and McGraw-Hill Education does not guarantee the accuracy of the information presented at these sites. mheducation.com/highered Preface This new edition retains in-depth discussion of famous cases, while providing updated, detailed analysis of the issues those cases raise. Each chapter also focuses on a key question that could be debated in class. Unique to this text is a single, authorial voice integrating description of the cases and their issues with historical overviews. The text is the only one that follows cases over decades to tell readers what did and, often, what did not, happen. Written by a professor who helped found bioethics and who has published in the field for 40 years, the text gives students a sense of mastery over this exciting, complex field. After they have read the book, I hope that students will feel that they have learned something important and that time studying the material has been well spent. New to the 8th Edition New research was added to each chapter, and a new list of topics to debate was included on the inside cover of the book. Every chapter has been rewritten, tightened, and augmented; issues have been clarified. Highlights of the new edition are outlined here. A NEW CHAPTER ON ALCOHOLISM (and addiction): Conflicting views on causes of alcoholism: Alcoholics Anonymous, neuroscience, Kant, genetics, social sciences, Fingarette. Focus on the famous case of Ernie Crowfeather. A MAJOR NEW CASE: The Bucharest Early Intervention Project: Is it the Tuskegee Study of neuroscience? Research on vulnerable human populations? A MAJOR NEW SECTON on research on people with schizophrenia, including cases of patients harmed by such research. Discussion of Ebola and Zika virus in AIDS chapter: How it has resembled our responses to AIDS? Discussion on CRISPR, the revolutionary method of changing genes that almost any geneticist can use to change a species and its progeny. Update on the Patient Protection and Affordable Care Act: Why it’s working and what are its latest problems? iii ivPreface Death and Dying: The case of Brittany Maynard; the case of Jahi McMath. Comas: Update on cases of Terri Schiavo, Belgian coma patient Rom Houben, and minimally conscious states. Abortion: Updates on death of Kenneth Edelin, declining numbers of abortion in America. New topics: Telemedicine and early-stage self-abortions, the Planned Parenthood video controversy, US Supreme Court decision limiting TRAP (Targeted Regulation of Abortion Providers) laws. Assisted Reproduction: Updates on the Gosselins, McCaughey septuplets, IVF clinics, mistaken swaps of embryos, outsourced surrogates, and foreigners using American surrogates; a sperm donor meets eight of his children, right-to-life groups file in court to protect frozen embryos; state surrogacy laws, Snowflake (embryo adoption and its high costs), brighter chances for infertile women aged 30–40 of having IVF baby on late tries. Stem Cells, Cloning, and Embyros: Updates on stem cells, battles over embryos among divorced couples and right-to-life friends, mitochondria-swapping to cure genetic disease (“a child with three parents”); hucksterism in selling stemcell therapies; continuing problems in cloning primates. Impaired Babies and Americans with Disabilities Act: Update on “Baby Jane Doe” Keri-Lynn, Marlise Munoz case; UAB’s controversial SUPPORT study on ­preemies, relevance to babies born with microcephaly from Zika virus. Ethics of Research on Animals: Updates on the Great Ape Project, Edward Taub’s work, legal protection for chimpanzees in research. Transplants and Organ Allocation: Updates on numbers, costs, and outcomes, especially for tracking bad outcomes of adult organ donors. Genetics chapter: The pitfalls and promises of: personalized genetic testing and Big Data, CRISPR, and testing for diseases with no treatments. Chapter on Enhancement: New emphasis on relation of enhancements to people with disabilities. If you have suggestions for improvement, please email me at: pence@uab.edu. ® Required=Results ©Getty Images/iStockphoto The 8th edition of Medical Ethics is now available online with Connect, McGraw-Hill Education’s integrated assignment and assessment platform. Connect also offers SmartBook for the new edition, which is the first adaptive reading experience proven to improve grades and help students study more effectively. All of the title's website and ancillary content is also available through Connect, including: • A full Test Bank of multiple choice questions that test students on central concepts and ideas in each chapter; • An Instructor's Manual for each chapter with full chapter outlines, sample test ­questions, and discussion topics; and • Lecture Slides for instructor use in class. McGraw-Hill Connect® Learn Without Limits Connect is a teaching and learning platform that is proven to deliver better results for students and instructors. Connect empowers students by continually adapting to deliver precisely what they need, when they need it and how they need it, so your class time is more engaging and effective. 88% of instructors who use Connect require it; instructor satisfaction increases by 38% when Connect is required. Using Connect improves passing rates by 10.8% and retention by 16.4%. Analytics Connect Insight® Connect Insight is Connect’s new one-of-a-kind visual analytics dashboard—now available for both instructors and students—that provides at-a-glance information regarding student performance, which is immediately actionable. By presenting assignment, assessment, and topical performance results together with a time metric that is easily visible for aggregate or individual results, Connect Insight gives the user the ability to take a just-in-time approach to teaching and learning, which was never before available. Connect Insight presents data that empowers students and helps instructors improve class performance in a way that is efficient and effective. Mobile Connect’s new, intuitive mobile interface gives students and instructors flexible and convenient, anytime–anywhere access to all components of the Connect platform. Students can view their results for any Connect course. Adaptive THE FIRST AND ONLY ADAPTIVE READING EXPERIENCE DESIGNED TO TRANSFORM THE WAY STUDENTS READ ©Getty Images/iStockphoto More students earn A’s and B’s when they use McGraw-Hill Education Adaptive products. SmartBook® Proven to help students improve grades and study more efficiently, SmartBook contains the same content within the print book, but actively tailors that content to the needs of the individual. SmartBook’s adaptive technology provides precise, personalized instruction on what the student should do next, guiding the student to master and remember key concepts, targeting gaps in knowledge and offering customized feedback, driving the student toward comprehension and retention of the subject matter. Available on smartphones and tablets, SmartBook puts learning at the student’s fingertips—anywhere, anytime. Over 4 billion questions have been answered making McGraw-Hill Education products more intelligent, reliable & precise. www.mheducation.com About the Author Gregory E. Pence is professor and chair of the Department of Philosophy at the University of Alabama at Birmingham. Between 1977 and 2011, he taught medical ethics at the University of Alabama Medical School. He still directs its Early Medical School Acceptance Program. In 2006, and for achievement in medical ethics, Samford University awarded him a Pellegrino Medal. He testified about human cloning before committees of the U.S. Congress in 2001 and the California Senate in 2003. He graduated cum laude in Philosophy with a B.A. from the College of William and Mary in 1970 and earned a Ph.D. from New York University in 1974, working mainly under the visiting professor, Peter Singer. In 2010, his UAB team was national champion of the Intercollegiate Ethics Bowl. His teams won national championships of the Bioethics Bowl at Duke University in 2011 and Florida State University in 2015. At UAB, he has won both the Ingalls and President’s Awards for excellence in teaching. • • • • He has written six trade books, including Who’s Afraid of Human Cloning? (1998), Re-Creating Medicine: Ethical Issues at the Frontiers of Medicine (2000), Designer Food: Mutant Harvest or Breadbasket of the World? (2002), Cloning after Dolly: Who’s Still Afraid? (2004), How to Build a Better Human: An Ethical Blueprint (2012), and What We Talk about When We Talk about Clone Club: Bioethics and Philosophy in Orphan Black (2016). He has edited four books of general essays, Classic Works in Medical Ethics (1995), Flesh of My Flesh: The Ethics of Cloning Humans (1998), The Ethics of Food: A Reader for the Twenty-First Century (2002), and Brave New Bioethics (2004). He has published over 60 op-ed essays in national publications: two each in the New York Times, Los Angeles Times, Newsweek, and Chronicle of Higher Education; one each in the Los Angeles Times, Atlanta Journal-Constitution, and Philadelphia Inquirer; and 35 in the Sunday Birmingham News. His reader, Brave New Bioethics, collects these essays from 1974 to 2002. A full list of books by Gregory Pence is available through Connect. vii Acknowledgments Several people helped in preparing the 8th edition of this text. Users of this text also improved the new edition with their suggestions and corrections. In particular, Charles Cardwell, Pellissippi State Community College in Tennessee, and Jason Gray, who taught bioethics at UAB for two years, spotted many errors and made many helpful suggestions, as did my colleagues Josh May and Matt King. My research assistant Karan Jani wrote helpful summaries of the Bucharest Early Intervention Project and CRISPR. Lillian Chien provided amazing proofing at the last stage. The ansrsource developmental editing, lead by Anne Sheroff and Reshmi Rajeesh were the perfect editors and helped me take this text to a higher level. I also appreciate the following reviewers for the eighth edition: Brendan Shea, Rochester Community and Technical College, Minnesota Sarah Schrader, University of California, Santa Cruz, California viii Brief Contents Chapter 1 Good and Bad Ethical Reasoning; Moral Theories and Principles Chapter 2 Requests to Die: Terminal and Nonterminal Patients Chapter 3 Comas: Karen Quinlan, Nancy Cruzan, and Terri Schiavo Chapter 4 Abortion: The Trial of Kenneth Edelin Chapter 5 Assisted Reproduction, Multiple Gestations, Surrogacy, and Elderly ­Parents 109 Chapter 6 Embryos, Stem Cells, and Reproductive Cloning Chapter 7 Impaired Babies and the Americans with Disabilities Act Chapter 8 Medical Research on Animals Chapter 9 Medical Research on Vulnerable Populations 196 Chapter 10 Ethical Issues in First-Time Organ Surgeries 221 Chapter 11 The God Committee 1 19 57 84 132 157 179 243 Chapter 12 Using One Baby for Another 264 Chapter 13 Ethical Issues in the Treatment of Intersex and Transgender ­Persons 284 Chapter 14 Involuntary Psychiatric Commitment and Research on People with Schizophrenia 299 Chapter 15 Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy Wexler, Angelina Jolie, Diabetes and Alzheimer’s 325 Chapter 16 Ethical Issues in Stopping the Global Spread of Infectious Diseases: AIDS, Ebola, and Zika 346 Chapter 17 Ethical Issues of the Patient Protection and Affordable Care Act 367 Chapter 18 Ethical Issues in Medical Enhancement (and their effect on people with Disabilities) 392 Chapter 19 Ethical Issues in Treating Alcoholism 405 ix Contents PREFACE iii 1. Good and Bad Ethical Reasoning; Moral Theories and Principles Good Reasoning in Bioethics 1 Giving Reasons 1 Universalization 2 Impartiality 3 Reasonableness 3 Civility 4 Mistakes in Ethical Reasoning 4 Slippery Slope 4 Ad Hominem (“To the Man”) 5 Tu Quoque (Pronounced “Tew-kwoh-kway”) 5 Straw Man/Red Herring 5 Post Hoc, Ergo Propter Hoc (“After This, Therefore, Because of This”) Appeal to Authority 6 Appeals to Feelings and Upbringing 7 Ad Populum 7 False Dichotomy (“Either-Or” Fallacy) 7 Equivocation 7 Begging the Question 8 Ethical Theories, Principles, and Bioethics 8 Moral Relativism 8 Utilitarianism 9 Problems of Utilitarianism 10 Kantian Ethics 11 Problems of Kantian Ethics 12 The Ethics of Care 12 Virtue Ethics 13 Natural Law 13 x 6 1 xi Contents Theories of Justice 15 Libertarianism 15 Rawls’s Theory of Justice 15 Marxism 16 Four Principles of Bioethics 16 Final Comment 18 Discussion Questions 18 Notes 18 2. Requests to Die: Terminal and Nonterminal Patients The Case of Elizabeth Bouvia (1983–Present) 19 The Legal Battle: Refusing Sustenance 20 The Case of Larry McAfee (1985–1995) 24 The Case of Brittany Maynard (2013–2014) 26 Background: Perspectives on Dying Well 27 Greece and Rome 27 The Bible and Religious Views 28 Philosophers on Voluntary Death 28 The Nazis and “Euthanasia” 30 Hospice and Palliative Care 32 Dying in Holland 32 Jack Kevorkian 33 Dr. Anna Pou 34 Rec