1

RONALD MUNSON

INTERVENTION AND REFLECTION: BASIC ISSUES IN BIOETHICS, 9TH EDITION

NOTES AND REFERENCES

Chapter 1: Physicians, Patients, and Others

The opening Case Presentation is based on the documentary film Dax's Case, by Unicorn Medical (Dallas, Texas) for the Council for Dying (New York, New York); produced by Donald Pasquella and Keith Burton: Directed by Donald Pasquella.

The Social Context: Autism and Vaccination is substantially indebted to Alice Park, “How Safe Are Vaccines,” Time (21 May 2008). Information is also drawn from the following New York Times articles: Gardiner Harris, “Experts to Discuss One Puzzling Autism Case, as a Second Case Has Arisen” (28 June 2008) and “Journal Retracts 1998 Paper

2

Linking Autism to Vaccines” (3 February 2010); Roni Caryn Rabin, “1 in 4 Parents Link Autism to Vaccines” (9 March 2010); Donald G. McNeil, Jr., “3 Rulings Find No Link to Autism in a Mercury Preservative in Vaccines” (13 March 2010). Information on the disease autism is available at http://www.mayoclinic.com/health/autism/ . Centers for Disease Control and Prevention statistics come from “Autism Spectrum Disorders (ASDs)” at

http://www.cdc.gov/ncbddd/autism/index.html . The “CDC Statement on Autism and Thimerosal” is available at http://www.cdc/gov/vaccinesafety/Concerns/Autism/Index.html and CDC “Timeline: Thimerosal in Vaccines (1999-2008) can be found at http://www.cdc.gov/vaccinesafety/updates/thimerosal_timeline.htm .

Information on the Kara Neumann case comes from New York Times articles: Dirk Johnson, “Trials Loom for Parents Who Embraced Faith over Medicine” (21 January 2009); and Emma Graves Fitzsimmons, “Wisconsin Couple Sentenced in Death of Their Sick Child” (8 October 2009). The Twitchell Case draws from David Margolic, "Death and Faith, Law and Christian Science," New York Times (6 August 1990) and "Convicted of Relying on Prayer," Time (16 July 1990). The reversal of the conviction was announced on CNN in November 1994.

3

Information on HPV and the HPV vaccine was drawn from the CDC’s “Recommendations of the Advisory Committee on Immunization Practices (ACIP)” (23 March 2007) at http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5602a1.htmThe account of the response to reporting adverse reactions to Gardasil draws from Radha Chitale, “CDC Report Stirs Controversy for Merck’s Gardasil Vaccine,” (19 August 2009) at http://abcnews.go.com. The Texas debate on mandating the HPV vaccine for girls draws on New York Times editorials: “A Necessary Vaccine” (26 February 2007); “A Vaccine to Save Women’s Lives” (6 February 2007); and on letters (10 February 2007), in addition to the articles: Ralph Blumenthal, “Texas Is First to Require Cancer Shots for Schoolgirls” (3 February 2007); Stephanie Saul and Andrew Pollack, “Furor over Push for a Cervical Cancer Vaccine” (17 February 2007), and Dan Frosch, “Texas House Rejects Order by Governor on Vaccines” (14 March 2007).

Statistics on the use of placebos come from Jon C. Tilburt, Ezekiel J. Emanuel, Ted J. Kaptchuk, Farr A. Curlin, and Franklin G. Miller, “Prescribing ‘Placebo Treatments’: Results of National Survey of U.S. Internists and Rheumatologists” BMJ (8 November 2008), 337, pp. 1097-1100, and from Gardiner Harris, “Study Finds Many Doctors Often Give Placebos,” New York Times (24 October 2008). Other New York Times articles supplied additional information: Margaret Talbot, “The Placebo Prescription” (9 January 2000); Olivia Judson, “Enhancing the

4

Placebo (4 May 2010); and Nicholas Bakalar, Perceptions: Positive Spin Adds to a Placebo’s Impact” (27 December 2010).

Material in the Social Context: Health Cops is drawn from these New York Times articles: N.R. Kleinfield, "Diabetes and Its Awful Toll Quietly Emerges as a Crisis" (9 January 2006); "At an Epicenter of Diabetes" (10 January 2006); Ian Urbina, "In the Treatment of Diabetes, Success Often Does Not Pay" (11 January 2006); and Eric Eckholm, “Medicaid Plan Prods Patients toward Health” (1 December 2006); from Daniel Williams, "Bent Out of Shape," Time (11 September 2006); Reuters, "Obesity Health Costs Exceed Smoking, Drugs" (3 June 2005); and Kate Walker, "Diabetes, Prevention, and Cause," UPI (26 October 2006). Statistics on obesity come from New York Times articles by Denise Grady, “Obesity Rates Keep Rising, Troubling health Officials” (4 August 2010); and Pam Belluck, “After a Longtime Rise, Obesity Rates in U.S. Level Off, Data Suggest” (14 January 2010). Statistics on Diabetes come from the American Diabetes Association at http://www.diabetes.org/diabetes-basics/diabetes-statistics .

The Social Context on medical tourism in South Korea is substantially indebted to the New York Times article by Choe Sang-Hun, “South Korea Joins Lucrative Practice of Inviting Medical Tourists to Its Hospitals” (16 November 2008). Additional information comes from the New York Times Op-Ed column by Arnold Milstein, Mark D. Smith, and Jerome P.

5

Kassirer, “Overseas, Under the Knife” (10 June 2009), and from letters responding to the column, “Second Opinions on Medical Tourism” (15 June 2009).

The information on Lee Lor in the Case Presentation “Healing the Hmong” comes from “Girl Flees After Clash of Cultures on Illness,” New York Times (12 November 1994), in addition to Anne Fadiman’s book Spirit Catches You and You Fall Down, cited in the text. For follow-ups on the case of Lor Lee, see Fresno Bee (2 November 1996) and (2 February 1995).

The Vegan Baby Case is based on the following articles from the New York Times: Corey Kilgannon, "Case of Vegetarian's Ailing Child Comes to Trial" ( 26 March 2003); Greg Retsinas, "Couple Guilty of Assault in Vegan Case" (5 April 2003).

Information in the Briefing Session comes from the following sources: On development of licensing procedures for physicians and on the development of medical education, see John Duffy, The Healers: The Rise of the Medical Establishment (New York: McGraw-Hill, 1977) and Kenneth M. Ludmerer, Time to Heal: American Education from the Turn of the Century to Managed Care (New York: Oxord University Press, 1999.) The multiple sclerosis study is reported in Hastings Center Report 13 (June 1983): 2-3. For a review of HIPPA, see Lynn Wagner, "Mapping the Way to HIPPA Compliance," Provider (March 2002), 20-34. On privacy and

6

HIPPA, see these New York Times articles: Abigail Zuger, "Sorry That Information is Off Limits" (3 June 2003); Robert Pear, "Health System Warily Prepares for Privacy Rules" (5 April 2003) and "Ruling Limits Prosecution of People Who Violate Law on Privacy of Medical Records" (5 June 2005). The Rand-Harvard study of oncologists is summarized in Lawrence K. Altman, “Studies Find Disparity in U.S. Cancer Care” New York Times (15 May 2005). For sources on the use of placebos, see the references in the Social Context: Placebos and Transparency. The materials on pregnancy and prosecution are drawn from: Martha Field, "Controlling the Woman to Protect the Fetus," Law Medicine and Health Care 2 (1989): 114-129 for the Monson and similar cases; New York Times (15 January 1986; for the Illinois cases; (2 February 1990) for a Wyoming case; for the Gillespie case; (24 July 1992) for the Florida Supreme Court decision; see Time (19 September 1988) for statistics about crack babies. The Supreme Court decision is reported in Linda Greenhouse, "Drug Tests Curbed During Pregnancy" New York Times (21 March 2001).

Chapter 2: Research Ethics and Informed ConsentOn the face-transplant Case Presentation on Connie Culp,

see “Connie Culp, Nation’s First Transplant Patient,” Associated Press (24 October 2009). Information is drawn in this section from the following New York Times articles: Lawrence K.

7

Altman and Anahad O’Conner, “Cleveland Clinic Gets Victim of Chimp Attack” (20 February 2009); Lawrence K. Altman, “First U.S. Face Transplant Described” (18 December 2008); "French in First, Use Transplant to Repair a Face" (1 December 2005); "Patient Opted for Transplant as Method to Mend Face" (2 December 2005); "Ethical Concerns on Face Transplant Grow" (6 December 2005); Craig Smith, "Dire Wounds, a New Face, a Glimpse in the Mirror" (2 December 2005); Pam Belluck, “Transplanting a Face: The Ethical Issues” (18 December 2008). Information was also drawn from Associated Press, "Face Transplant Woman Says She's Okay," (7 December 2005); Adam Sage, "Face Transplant Woman to Profit from Picture Sales,” Times of London (8 December 2005); Jordan Lite, “Chinese Face-Transplant Recipient Has Died,” Scientific American News Blog (22 December 2008): News.com.au, “Chinese Face Transplant Li Guoxing Dies” (20 December 2008); BBC News, Man Has Partial Face Transplant” (14 April 2009) and “Face Transplant Double Success” (20 April 2009); MSNBC.Com, “World’s Third Face Transplant Carried Out” (14 April 2009); and Medical News Today, “Plastic Surgeons Face War Injuries from Iraq to Inner-City Violence” (16 April 2009).

The basic information about Abigail Burroughs and the Abigail Alliance comes from the website abigail.alliance.org. Additional information about Abigail Burroughs and the suit

8

against the FDA is drawn from the following New York Times articles: Andrew Pollack, “FDA Restricts Access of Cancer Drug, Citing Ineffectiveness” (18 June 2005) and “Court Rejects the Right to Use Drugs Being Tested” (8 August 2007); and Linda Greenhouse, “Justices Won’t Hear Appeal on Drugs for the Terminally Ill” (15 January 2008). The decision in the case Abigail Alliance for Better Access to Developmental Drugs v. von Eschenbach, 495 F.3d 695 (D.C. Cir. 2007) and the issues involved are usefully discussed in Harvard Law Review (121: 1685-1692) 2008.

The Social Context on using prisoners as test subjects makes use of information the following New York Times articles: Ian Urbina, “Panel Suggests Using Inmates in Drug Trials” (7 August 2006) and the editorial “Safe Drug Testing in Prisons” (23 August 2006). The Institute of Medicine’s “Ethical Considerations for Research Involving Prisoners” (June 2006) reviews earlier recommendations, then discusses five measures to protect prisoners as research subjects. An account of the malaria research conducted in 1944 is given in Alf S. Alving, et al. “Procedure Used at Stateville Penitentiary for the Testing of Potential Antimalarial Agents,” Journal of Clinical Investigation, 27 (Issue 3, Part 3; May 1948): 2-5. Allen M. Hornblum’s Acres of Skin: Human Experiments At Holmesburg Prison (New York: Routledge, 1998) is a thorough account of the experiments and the prevailing attitude toward using

9

prisoners and research subjects. I am also indebted to Evelyne Schuster’s review of the book in Journal of Criminal Justice and Popular Culture, 6 (1998), 4-9.

The Jesse Gelsinger Case Presentation draws heavily from Paul Gelsinger's statement to the National Human Research Protections Advisory Committee Meeting at Bethesda, MD on 29 January 2002. Additional information is from Sheryl Gay Stolberg, "The Biotech Death of Jesse Gelsinger," New York Times Magazine (28 November 1999).

The Social Context on Cold War radiation research is based on the New York Times articles: Keith Schneider, "Nuclear Scientists Irradiated People in Secret Research" (17 December 1993); "1950 Memo Shows Worry over Radiation Tests" (28 December 1993); and "Signatures in Experiment Called Forgery" (12 April 1994); and John H. Cushman, Jr., "Study Sought on All Testing on Humans" (10 January 1994). More recent developments are reported in the New York Times: Philip J. Hilts, "Secret Radioactive Experiments to Bring Compensation by the U.S." (20 November 1996); and Matthew L. Wald, "Rule Adopted to Prohibit Secret Tests on Humans" (29 March 1997). See also the Associated Press story "Settlement is Reached in Suit over Radioactive Oatmeal" (31 December 1997). Eileen Welsome’s The Plutonium Files: America’s Secret Medical Experiments in the Cold War (New York: Delta Books, 1999) tells the whole story in detail. The

10

ethical issues are addressed explicitly in Chapter 5 of Jonathan D. Moreno’s Undue Risk (New York: Freeman: 2000).

Details of the experiments in the Willowbrook case are taken from Saul Krugman and Joan P. Giles, "Viral Hepatitis: New Light on an Old Disease," JAMA, 212 (1970): 1019-1021. "Echoes of Willowbrook or Tuskegee?" is based on Philip J. Hilts, "Ethics Officials to Investigate Drug Experiments on Children," New York Times (15 April 1998).

The account of the Pernkopf anatomy controversy is based on Nicholas Wade, "Doctors Question Use of Nazi's Medical Atlas," New York Times (26 November 1996).

Facts in the Letrozole Case Presentation are drawn from the following New York Times articles: Gina Kolata, "New Drug Regimen Greatly Cuts Risk of Recurring Breast Cancer" (10 October 2003); Editorial, "Halting a Breast Cancer Trial" (12 October 2003); Richard A. Friedman, "Long-Term Questions Linger in Halted Breast Cancer Trial" (21 October 2003). For an update, see National Cancer Institute Website, “Study Confirms Letrozole Prevents More Breast Cancer than Tamoxifen” (2 December 2011).

The Baby Fae Case Presentation is based on the following New York Times stories: L. K. Altman, "Learning from Baby Fae," (18 November 1984); Philip M. Boffey, "Medicine under Scrutiny" (20 November 1984); Sandra Blakeslee, "Baboon Implant in Baby Fae Assailed" (20 December 1985). For a

11

detailed discussion, see Ronald Munson, Raising the Dead: Organ Transplants, Ethics, and Society (New York: Oxford University Press, 2002), Chapter 7.

In the Briefing Session, the account of Nazi experiments is from the indictment in United States vs. Karl Brandt, excerpted in Hastings Center Report, "Special Supplement: Biomedical Ethics and the Shadow of Nazism" (6 August 1976). For an account of the background of Nazi medical atrocities, see Robert N. Proctor, Racial Hygiene: Medicine under the Nazis (Cambridge, MA: Harvard University Press, 1988). Much less well known are the medical atrocities committed by the Japanese on American prisoners of war and Chinese prisoners and civilians during World War II. See Hal Gold, Unit 731: Testimony (Rutland, VT: Tuttle Publishing, 1997), Laurence Rees, Horror in the East: Japan and the Atrocities of WW II (New York: D Capo Press, 2002), and Daniel Barenblatt, A Plague upon Humanity (New York: Harper-Collins, 2005). For an account of a vivisection carried out by a member of the notorious Unit 731 and the activities of the unit, see Nicholas Kristof’s New York Times article “Unmasking Horror—A Special Report: Japan Confronting Gruesome War Atrocity” (17 March 1995).

The classical paternalistic view of consent is expressed in Eugene G. Laforet, "The Fiction of Informed Consent," JAMA 235 (12 April 1976): 1579 - 1585. Placebos are discussed in

12

Sissela Bok, "The Ethics of Giving Placebos," Scientific American 231 (November 1974): 17-23.The benefit of using placebos in drug trials is discussed in Andrew C. Leon, “Placebo Protects Subjects from Nonresponse,” Archives of General Psychiatry, Vol. 57 (April 2000). The discussion of research and children is indebted to Jean D. Lockhart, "Pediatric Drug Testing," Hastings Center Report 7 (June 1977): 8-10. Prisoners and research is discussed in Jessica Mitford, Kind and Usual Punishment (New York: Knopf, 1973), as well as in the books and articles mentioned in the notes to the Social Context: Prisoners as Research Subjects. The historical cases of research on the poor are from M. H. Pappworth, Human Guinea Pigs (Boston: Beacon Press, 1961), pp. 61 - 62. The Tuskegee case details are from the "Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel," U.S. Public Health Service (Washington, D.C., 1973). HHS regulations on children as research subjects were published in the Federal Register (8 March 1983). The problem of conducting clinical trials with participants who represent the population presented in a review of twenty-nine trials in the Annals of Surgical Oncology (December 2007 Statistics about researchers and financial conflicts are from E.A. Boyd and L.A. Bero, "Assessing Faculty Financial Relationships with Industry," JAMA, 284 (Nov. 1, 2000), 2209-2214. On the tamoxifin trial, see, "Scientists Cancel Tamoxifen Test," Associated Press (7 April 1998). For the

13

continuing debate over conflict of interest, see these New York Times articles: Rony Caryn Rabin, “Researchers Square off on Disclosure” (1 April 2009), “Doctors Urged to End Corporate Ties” (2 April 2009); Gardiner Harris, “Academic Researchers’ Conflicts of Interest go Unreported” (19 November 2009); and “Medical Journal Changes Its Policy After Criticism by Group” ( 9 January 2009).

On foreign drug testing, see these New York Times articles: Elisabeth Rosenthal, "For More Drugs, First Test Is Abroad" (7 August 1990); Warren E. Leary, "U.S. Ethics Are Questioned by Critics of Vaccine Test in Italy and Sweden” (13 March 1994); Natasha Singer, “A Study Faults Overseas Drug Trials” (19 February 2009). Concerns about testing drugs in overseas populations are discussed by James Gallagher in “UNC Researchers Raise Questions about overseas Drug Trials” Triangle Business Journal (18 February 2009).

Chapter 3: Genetic ControlInformation on the patenting of human genes comes from

Elizabeth Landau, “How Human Genes Become Patented” CNN (13 May 2009); Robert Cook-Deegan, “Gene Patents,” www.thehastingscenter.org/Publications/BriefingBook/

Detail.aspx?id=2174; Sharon Begley, “In Surprise Ruling, Court Declares Two Gene Patents Invalid,” http://blog.newsweek.com/blogs/thehumancondition/archive (29

14

March 2010); Susan Decker and Thom Weidlich, “Myriad Loses Ruling over Breast Cancer-Gene Patents” http://www.businessweek.com/news (29 March 2010); “Federal Judge in New York Says Company Does Not Have the Right to Patent Genes” http://www.statesman.com/news/local (29 March 2010); and the following New York Times articles: John Schwarz, “Cancer Patients Sue Testing Company and Government Over Gene Patents” (31 May 2009); Schwartz and Andrew Pollack, “Judge Invalidates Human Gene Patent,” (29 March 2010 and “Cancer Genes Cannot Be Patented, U.S. Judge Rules” (30 March 2010); John Dwyer, “Who Owns Genes? Nature, a Judge Says” (31 March 2010); and Pollack, “After Patent on Genes Invalidated, Taking Stock” (31 March 2010). On the patenting of the bacterium Pseudomonas, see “Environment: Oil-Eating Bug,” Time (22 September 1975). On patenting genes in general see the New York Times Op-Ed piece “Patenting Life” by Michael Crichton (13 February 2007).

The Huntington's Disease Case Presentation relies on Gina Kolata, "Closing in on a Killer Gene, Discover (March 1984): 83 - 87. See also Lawrence K. Altman, "Researchers Report Genetic Test Detects Huntington's Disease," New York Times (9 November 1983) and Albert Rosenfeld, "At Risk for Huntington's Disease," Hastings Center Report 14 (June 1984): 5 - 8. Nancy Wexler's views on genetic testing are quoted from Mary Murray, "Nancy Wexler," New York Times Magazine (13

15

February 1993): 28 - 31. For a profile of Wexler, see Time (10 February 1992). On more recent developments, see the following New York Times articles: Sandra Blakeslee, "Unusual Clues Help in Long Fight to Solve Huntington's Disease" (27 October 1992) and Natalie Angier, "Action of Gene in Huntington's Is Proving a Tough Puzzle" (2 November 1993).For an account of how getting even good news about Huntington's disease can be stressful and disorienting, see Patrick Cooke, "A Genetic Test for Huntington's Let Colin MacAllister See His Future, And That's When His Free Fall Began," Health (July-August, 1993), 81-86; and Jill Smolowe, “Seeing the Future,” Time (1 October 1997).

The objections cited in Social Context: Testing for Disease Predispositions: Is It Better Not to Know are from Amy Harmon, "The Problem With an Almost-Perfect Genetic World," New York Times (20 November 2005). On the effect of learning about Alzheimer’s risk, see Denise Grady, “Learning of Risk of Alzheimer’s Seems to Do No Harm,” New York Times (16 July 2009). On choices for patients with BRCA mutation, see Amy Harmon, “Cancer Free, but Weighing a Mastectomy,” New York Times (16 September 2007); Roni Caryn Rabin, “Study finds Rise in Choice of Double Mastectomies,” New York Times (23 October 2007) and Mary Ann Roser, “Cedar Park Woman, Fearing High Cancer Risk, Chooses Hysterectomy, Double Mastectomy,” American-Statesman (9

16

January 2010); Tara Parker-Pope, “After Cancer, Women Remove Healthy Breast,” New York Times (9 March 2010). On breast cancer conclusions, see Jeffry Kluger, Time (26 May 1997). Poll results are from a 1994 Time/CNN survey cited in Time (17 January 1994), p. 50.

On using genetics to tailor treatment, see Mechtild Schmedders, Jan van Aken, et al., "Individualized Pharmacogenetic Therapy: A Critical Analysis," Community Genetics, 6 (2003), 114-119; Andrew Pollack, "A Special Drug Just for You," New York Times (8 November 2005); Benedict Carey, “Genes Tied to Bad Reactions to Antidepressant Drug” New York Times (28 September 2007; Leslie Pray, “Personalized Medicine: Hope or Hype?” Scitable by Nature Education (2008); and New York Times articles by Andrew Pollack, “Genetic Tests May Reveal Source of Mystery Tumors,” (10 March 2009); and Amy Harmon: “A Roller Coaster Chase for a Cure,” (22 February 2010) and “After Long Fight, Drug Gives a Sudden Reprieve (23 February 2010). On genetic testing for cancer, see Andrew Pollack, "Flaw Seen in Genetic Test for Cancer Risk: Mutations That Could Cause Breast Cancer Can Be Missed," New York Times (22 March 2006). On genetic discrimination, see Francis S. Collins and James d. Watson, "Genetic Discrimination: Time to Act," Science, 302 (31 October 2003), 745; and Denise Grady, “Experts Decode Cancer Patient’s Genes, Seeking Treatment

17

Clues,” New York Times (6 November 2008). On disease risk associated with genes in the human genome, see in the New York Times Nicholas Wade, "Genetic Catalogue May Aid Search for Roots of Disease" ( 27 October 2005) and "Gene Increases Diabetes Risk" (16 January 2006). Arguments summarized in the Social Context Predictive Genetic Testing: To Test or Not to Test? can be found in Evelyne Shuster, “Microarray Genetic Screening: A Prenatal Roadblock for Life?” Lancet, 369 (9560): 526-9 (10 February 2007), and P. Mallia and Henk ten Have, “From What Should We Protect Future Generations: Germ-Line Therapy or Genetic Screening?” Medicine, Health Care & Philosophy (6 (1):17-24 (2003). See also, Amy Harmon, “Genetic Testing + Abortion = ???” New York Times (13 May 2007). For the testimony of a child with Down Syndrome, see Amy Harmon, “Prenatal Test Puts Down Syndrome in Hard Focus,” New York Times (9 May 2007) and letters in response, “To Raise a Down Syndrome Child” (11 May 2007). For statistics on the use of predictive genetic testing, see Alice Park, “Genetic Tests for Newborns Now Widespread,” Time (19 February 2009).

For the kinds of discrimination that led to the Genetic Information Nondiscrimination Act, see Amy Harmon, “Fear of Insurance Trouble Leads Many to Shun or Hide DNA Tests,” New York Times (24 February 2008) and letters in response: “When DNA and Insurance Collide” (2 March 2008). For

18

information on the law, see New York Times articles by Amy Harmon, “Congress Clears Bill to Bar Bias Based on Genes” (2 May 2008); and Steven Greenhouse, “Law Seeks to Ban Misuse of Genetic Testing” (16 November 2009); as well as the New York Times Op-Ed article “A Ban on Genetic Discrimination” (22 November 2009). See also “President Bush Signs Landmark Genetic Nondiscrimination Information Act into Law,” http://www.sciencedaily.com/releases/2008/05/080526152654.htm (26 May 2008), and Susannah Baruch, Genetics & Public Policy Center, Johns Hopkins University, “The Genetic Information Nondiscrimination Act,” (8 May 2008).

For direct-to-consumer gene testing, see New York Times articles by Nicholas Wade, “Experts Advise a Grain of Salt with Mail-Order Genomes, at $1,000 a Pop” (17 November 2007); Gina Kolata, “$300 to Learn Risk of Cancer of the Prostate” (17 January 2008); Robert Pear, “Growth of Genetic Tests Concerns Federal Panel” (18 January 2008); Andrew Pollack, “Gene Testing Questioned by Regulators” (26 July 2008); “Firm Brings Gene Tests to Masses” (29 January 2010); and “Gene-Testing Companies: Too Little Too Soon for Success” (20 March 2010); “Start-Up May Sell Genetic Tests in Stores” (11 May 2010); and “Walgreens Delays Selling Personal Genetic Test Kit” (13 May 2010). The Pathway Genomics press release “Pathway Genomics to Offer Retail Genetic Testing Kits” (11 May 2010) is available at http://www.pathway.com/about-us/pr/2010/2010-

19

05-11 . See also articles by Sandra M. Jones and Bruce Japsen, “Genetic Testing Kits to Be Sold at Drugstores,” Los Angeles Times (12 May 2010); Sarah N. Lynch, “Should Genetic Tests Be Regulated?” Time (22 July 2008); and Leslie Pray, “DTC Genetic Testing: 23andme, DNA Direct and Genelex,” Scitable by Nature Education (2008). For a personal genome, see John Markoff, “I.B.M. Joins Pursuit of $1,000 Personal Genome,” New York Times (6 October 2009). For an assessment of the risks and benefits of genetic tests for the consumer, see Jane E. Brody, “Buyer Beware of At-Home Genetic Tests,” New York Times (1 September 2009).

The Gene Therapy Case Presentation draws from Eve K. Nicholas, Human Gene Therapy (Cambridge, Mass.: Harvard University Press, 1988). The plan to initiate ADA gene therapy is described in Natalie Angier, "Gene Implant Therapy," New York Times (8 March 1990), and her account of the first case is in "Girl, 4, Becomes First Human to Receive Engineered Genes," (15 September 1990). Biographical details of Ashanthi Desilva and additional treatments are reported in Larry Thompson, "The First Kids with New Genes," Time (7 June 1993): 50-53. The first case, as well as plans for future ones, is discussed in W. French Anderson, "Human Gene Therapy," Science (8 May 1992): 808-813. An excellent review of the ethical issues is Leroy Walters and Julie Gage Palmer, Ethics of Human Gene Therapy (N.Y.: Oxford University Press, 1996).

20

For the adverse events in France, see "Gene Tampering," Time (14 October 2002) and Sheryl Gay Stolberg, "Panel Advises Resuming Gene Studies," New York Times (10 October 2002). In the Gelsinger case (see Chapter 1, Case Presentation), a gene-therapy trial went badly wrong, thus calling into question the wisdom of additional trials. For a setback to the technique RNA interference, see Andrew Pollack, “Mice Deaths Are Setback in Gene Test” New York Times 25 May 2006. For an unexplained death during gene therapy treatment for rheumatoid arthritis, see New York Times articles by Andrew Pollack, “Death in Gene Therapy Treatment Is Still Unexplained” (18 September 2007) and “Gene Therapy Study to Resume After Woman’s Death” (26 November 2007). For a renewed sense of the promise of gene therapy, see Amy Dockser Marcus, “Study Shows Hope for Gene Therapy” New York Times (7 July 2010).

The Social Context on the Human Genome Project draws from the following New York Times articles by Nicholas Wade: "Genetic Code of Human Life is Cracked by Scientists" (27 June 2000), "Big Stride for Researchers in Human Gene Mapping," New York Times (15 March 1997), "Genome's Riddle" (13 February 2001), "Now the Hard Part: Putting the Genome to Work" (27 June 2000); ); “Quest for the $1000 Human Genome” (18 July 2006); “$10 Million Prize Set Up for Speedy DNA Decoding” (5 October 2006); “Genome of DNA Discoverer Is Deciphered” (1 June 2007); “Pursuing Synthetic

21

Life, Scientists Transplant Genome of Bacteria” (29 June 2007); “A Dissenting Voice as the Genome Is Sifted to Fight Disease” (16 September 2008); “From One Genome, Many Types of Cells, But How?” (24 February 2009; “Technology Lowers Cost of Decoding a Genome to $50,000” (11 August 2009); “Disease Cause Is Pinpointed with Genome” (11 March 2010). On the decoding of personal genomes, see also New York Times articles by Amy Harmon, “6 Billion Bits of Data about Me, Me, Me!” (3 June 2007) and “Personal Genomes Going Public, on Web, for the Sake of Research” (20 October 2008); and the New York Times Magazine article by Steven Pinker, “My Genome, My Self” (11 January 2009). On lowering the cost of decoding genomes, see Andrew Pollack, “The Race to Read Genomes on a Shoestring, Relatively Speaking,” New York Times (9 February 2008), and on using the genome to understand the interrelations among diseases, “Redefining Disease, Genes and All” New York Times (6 May 2008). On the genome from the point of view of the chromosomes, see Matt Ridley Genome: The Autobiography of a Species in 23 Chapters (New York: Harper-Collins, 1999); for the story of the scientific "race," see Kevin Davies: Cracking the Genome: Inside the Race to Unlock Human DNA (New York: Free Press, 2001). For criticisms of patenting genetic information, see Michael Crichton, "This Essay Breaks the Law," New York Times 19 March 2006).

22

Information in the Social Context on the scientific background to the embryonic stem-cell debate comes from the following New York Times articles: Gina Kolata, "Embryonic Cells, No Embryo Needed," (11 October 2005), “Scientists Bypass Need for Embryo to Get Stem Cells” (21 November 2007), and “Researcher Who Helped Start Stem Cell War May Now End It” (22 November 2007); Nicholas Wade, "Harvard Scientists Report a Stem-Cell Advance" ( 23 August 2005); “Biologists Make Skin Cells Work Like Stem Cells” (7 June 2007); “In New Method for Stem Cells, Viable Embryos” (24 August 2007); “Researchers Report Advances in Cell Conversion Technique” (28 August 2008); “Rethink Stem Cells? Science Already Has” (10 March 2009); and “13 New Stem Cell Lines Open to Research (3 June 2009); and Andrew Pollack, “After Stem-Cell Breakthrough, the Real Work Begins” (27 November 2007) and “Milestone in Research in Stem Cells” (23 January 2009) . Information on the politics of the debate comes from the following New York Times articles: Sheryl Gay Stolberg, "G.O.P. Lawmakers Offer Alternative Bill on Stem Cells" (12 July 2005); "Senate Leader Veers from Bush Over Stem Cells" (29 July 2005); "Senate Leader Criticized and Praised for Stem Cell Shift" (30 July 2005) ); “Obama Leaving Some Issues about Stem Cells to Congress” (9 March 2009); “Obama Lifts Bush’s Strict Limits on Stem Cell Research” (10 March 2009); David Stout and Gardiner Harris, “Obama

23

Reversing Stem-Cell Limits Imposed by Bush” (7 March 2009); Gardiner Harris, ”Obama Plans to Retain some Limits on Stem Cells” (18 April 2009); “Rules Will Allow Financing for Old Stem Cell Lines” (7 July 2009); “U.S. Judge Rules against Obama’s Stem Cell Policy” (23 August 2010); “The Two Plaintiffs at the Center of the Ban on Stem Cell Use” (24 August 2010); and “Stem Cell Financing Ban Ends, for Now” (10 September 2010); Shaila Dewan, “After Change in Federal Policy, Some States Take Steps to Limit Stem Cell Research” (14 March 2009); and Libby Nelson, “New York State Allows Compensation in Egg Donations for Research,” (26 June 2009). See also Yuval Levin, “The Real Lessons of Stem Cells,” Time (30 March 2009).

On doubts about the effectiveness of somatic cells in treatment, see Nicholas Wade, "Stem Cell Treatment for Heart Attack Falters," New York Times (1 March 2006). For basic information, see National Institutes of Health, "Stem Cells: A Primer" (May, 2000), http://www.nih.gov/news/stemcell/primer/htm . For the therapeutic possibilities of stem cells, see Ronald Munson, Raising the Dead: Organ, Transplants, Ethics, and Society (New York: Oxford University Press, 2002), Chapter 11, "Grow Your Own Organs: Stem-Cell Engineering and Regenerative Medicine."

24

The official Roman Catholic view of stem cells is found in Pontifical Academy of Life, "Declaration on the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells," issued at Vatican City: 25 August 2000. For accounts of the recent research and criticisms, I am indebted to the magisterial series of articles by Nicholas Wade in the New York Times: "Embryo Cell Research: A Clash of Values," New York Times (2 July 1999);"Stem Cells Yield Promising Results" (31 March 2001); "Findings Deepen Debate on Using Embryonic Stem Cells" (3 April 2001); "Experiment Offers Hope for Tissue Repair" (22 January 1999). The President's Council on Bioethics report, Human Cloning and Human Dignity: An Ethical Inquiry (July, 2002), is available at http://bioethics.georgetown.edu/pcbe/reports/cloningreport/ .

The account of PKU screening in the Briefing Session draws from National Academy of Sciences, Genetic Screening: Programs, Principles, and Research (Washington, D.C.: National Academy of Sciences, 1975). For an account of alpha-fetoprotein screening, see Barbara Gastel et al., eds., Maternal Serum Alpha Fetoprotein: Issues in the Prenatal Screening and Diagnosis of Neural Tube Defects (U.S. Department of Health and Human Services Publication HE 20.2: M41, 1981). For social problems caused by PKU laws and sickle-cell screening, see Philip Reilly, "There's Another Side to Genetic Screening," Prism (January 1976): 55 - 57. Genetic screening and the

25

problems it poses for rights is considered by Susan West, "Genetic Testing on the Job," Science 82 (September 1982), p. 16.

On genetic testing, see Sandra Blakeslee, "Cause of Brain Cells' Death in Seven Diseases Is Discovered," New York Times (8 August 1997); Nicholas Wade, "Two Gene Discoveries Help Explain Misfires of Epilepsy in the Brain," New York Times (30 December 1997), "Newly Discovered Gene Offers Clues on Deafness," (14 November 1997); "Gene Mutation Tied to Colon Cancers in Askenazi Jews (26 August 1997); "Gene From a Mideast Ancestor May Link 4 Disparate Peoples," (22 August 1997) on familia Mediterranean fever disease; and "Genetic Cause Found for Some Cases of Human Obesity" (27 June 1997; Denise Grady, "Gene Link to Incurable Eye Disease is Found," New York Times (19 September 1997); Associated Press, "Blood Test Uncovers Inherited Diseases In Fetuses, (4 November 1996) and "Two Genes Found to be Causing Some Diabetes" (5 December 1996); Natalie Angiers, "Scientists Zero In On Gene Tied to Prostate Cancer" New York Times (22 November 1996); Nicholas Wade, “Scientists Discover Gene Linked to Higher Rates of Prostate Cancer,” New York Times (8 May 2006).

On genetic disorders that worsen over generations, see Anastasia Toufexis, "The Generational Saga of the Vicious Gene," Time (17 February 1992): 72; and Gina Kolata,

26

"Discovery Upsets Geneticists' Ideas on Inherited Ills," New York Times (6 February 1992). As background on genes affecting breast cancer, see Rachel Nowa, "Breast Cancer Gene Offers Surprises," Science (23 September 1994): 1796--1799; Gregory Cowley, "Family Matters: Hunt for a Breast Cancer Gene," Newsweek (6 December 1993): 46 - 52; and Kenneth Offit, "Hostage to Our Genes?" New York Times (22 September 1994). On cystic fibrosis, see Andrew Purvis, "Laying Siege to a Deadly Gene," Time (24 February 1992) and Natalie Angier, "Researchers Trace Primary Cause of Cystic Fibrosis to the Stone Age," New York Times (1 June 1994). The account of the discovery of the cystic fibrosis gene is based on Sandra Blakeslee, "Discovery May Help Cystic Fibrosis Victims," New York Times (24 August 1989). See the Associated Press stories "Gene Defect for a Type of Dwarfism Is Found" (31 July 1994, on Canavan disease); "Researchers Find Key to Rare Brain Disorder" (4 October 1993); "Gene Linked for First Time to High Blood Pressure" (7 October 1992); "Gene Linked to Diabetes Found" (12 January 1993); and "Genetic Defect Linked to Alzheimer's" (23 October 1992). See E. Pennisi, "Free-Radical Scavenger Gene Tied to ALS," Science News (6 March 1993). See the following New York Times stories: Tim Hilchey, "Researchers Find Genetic Defect That Causes Rare Immune Disease" (9 April 1993) and Natalie Angier, "Gene Is Found That Causes Rare Type of Hypertension" (16 January 1992).

27

For other gene-linked diseases see New York Times articles by Nicholas Wade, “Gene Identified as Risk Factor for Heart Ills” (4 May 2007); “Scientists Find Genetic Link for a Disorder” (19 July 2007); and “Research Teams Identify Gene Seen as Tied to Multiple Sclerosis” (30 July 2007).

Guidelines on sickle-cell testing are in Warren E. Leary, "Sickle-Cell Screen Urged for All Newborns," New York Times (28 April 1993); on treatments, see Leary's "Intractable Pain of Sickle Cell Begins to Yield," New York Times (7 June 1994). Ethical issues about testing and children are discussed in Gina Kolata's, "Should Children Be Told If Genes Predict Illness?" New York Times (26 September 1994). For general review and references, see Philip Kitcher, The Lives to Come: The Genetic Revolution and Human Possibilities (New York: Simon and Schuster, 1996). On the limited influence of genetic information on food production, see Andrew Pollack, "Biotech's Sparse Harvest," New York Times (14 February 2006).

For gene therapies for specific diseases, see a Reuters article, “Gene Therapy Used to Treat Skin Cancer” New York Times (31 August 2006); “Q&A: Gene therapy for Eyes,” BBC News Channel (1 May 2007); Associated Press, “Small Gene Study Shows Help for Parkinson’s” New York Times (22 June 2007); Pallab Ghosh, “Gene Therapy ‘Aids Youth’s Sight,’” BBC News (27 April 2008); Daniel J De Noon, “’Major Advance’ in HIV Gene Therapy,” WebMD Health News (16

28

February 2009); and Pam Belluck, “Giving Sight by therapy with Genes” New York Times (3 November 2009). For specific techniques of gene therapy, see New York Times articles by Andrew Pollack, “Pfizer Acquires a Stem-Cell Therapy” (21 December 2009) and Nicholas Wade, “In new Way to Edit DNA Hope for Treating Disease” (29 December 2009).

Chapter 4: Reproductive Control The discussion of the McCaughey septuplets is based on

Pam Belluck, "Iowan Makes U.S. History, Giving Birth to 7 Live Babies," New York Times (20 November 1997) and "Heartache Frequently Visits Parents With Multiple Births," New York Times (3 January 1997); Gina Kolata, "Many Specialists Are Left In No Mood for Celebration," New York Times (21 November 1997). For personal details of the family also see M.D. Lemonick, "'It's a Miracle,'" Time (1 December 1997), 35-39. The account of the Suleman octuplets is based on Randal C. Archibold, “Octuplets, 6 Siblings, and Many Questions,” New York Times (4 February 2009) and John Bowe, “Octomom in Production,” New York Times Magazine (19 November 2009). See also Paul Harris, “A Bidding War and a Row over Ethics: how the Octuplets’ Story Turned Sour,” The Guardian (1 February 2009); Time articles by Alison Stateman, “The Octuplets’ Mom Speaks, and the Questions Grow” (7 February 2009) and Nancy Gibbs, “Calling a Truce on the

29

Octuplets’ Mom” (9 February 2009); Stephanie Saul, “Birth of Octuplets Puts Focus on Fertility Clinics,” New York Times (12 February 2009); Associated Press, “Octuplet Mom Helped Boost Doctor’s Stats” (22 February 2009); Raina Kelley, “Octomom Hypocrisy,” Newsweek Web Exclusive (3 March 2009) and the letters responding, Newsweek (30 March 2009); and the editorial “Commentary: Suleman, Octuplets and Medical Ethics,” Tacoma News Tribune (9 February 2009).

For the issues involved in multiple births, see the following New York Times articles: Nicholas Bakalar, “Prematurity May Lead to Adult Problems” (16 September 2008) and “Trends Shift, with Births on the Rise” (20 January 2009); Stephanie Saul, “In Vitro Clinics Face Questions on Risks over Multiple Births” (12 February 2009); “The Gift of Life, and Its Price” (11 October 2009), with letters in response (14 October 2009); and “Grievous Choice on Risky Path to Parenthood” (12 October 2009); Laurie Tarkan, “Lowering the Odds of Multiple Births” (19 February 2009).

The Social Context: Shopping the Sperm Supermarket” is indebted to Amy Harmon, "First Comes the Baby Carriage," New York Times (13 October 2005) and Jennifer Egan, "Wanted: A Few Good Sperm," New York Times Magazine (19 March 2006, pp. 44-51, 66-68, 81, 98-100.). Information about donor siblings comes from two New York Times articles by Amy Harmon: "Hello, I'm Your Sister" (20 November 2005) and

30

"Are You My Sperm Donor?" (20 January 2006). For a company selling “ready-made embryos,” see Rob Stein, “’Embryo Bank’ Stirs Ethics Fears: Firm Lets Clients Pick among Fertilized Eggs,” Washington Post (6 January 2007). For the effect on children conceived with donor sperm or eggs, see Ross Douthat, “The Birds and the Bees (via the Fertility Clinic),” New York Times (31 May 2010).

The debate about selling ova is reported by Gina Kolata in "Young Women Offer to Sell Their Eggs to Infertile Couples," New York Times (10 November 1991) and David Tuller in “Payment Offers to Egg Donors Prompt Scrutiny” New York Times (11 May 2010). For risks to donors, see Roni Caryn Rabin, “As Demand for Donor Eggs Soars, High Prices Stir Ethical Concerns,” New York Times (15 May 2005) and Helen Pearson, “Health Effects of Egg Donation May Take Decades to Emerge,” Nature (10 August 2006). About the experience of using donor eggs, see Peggy Orenstein, “Your Gamete, Myself,” New York Times Magazine (15 July 2007).

The most recent information on the status of ART is available at http://www.cdc.gov/art/ . Statistics about the success of assisted reproduction come from http://www.cdc.gov/art/ARTReports.htm . Estimates of the 2006 costs of AR procedures are from the CDC website cdc.gov.

See the following New York Times articles on the topics indicated: economic costs, Claudia Dreiful, "An Economist

31

Examines the Business of Fertility" (28 February 2006); on women desperate enough to spend almost anything, Gina Kolata, "The Heart's Desire" (11 May 2004); on women seeking lower AR costs, Felcia R. Lee, "Fertility Tourists Go to Great Lengths to Conceive" (25 January 2005); on practices in the AR industry, Stephen S. Hall, "U.S. Panel About to Weigh In On rules for Assisted Fertility" (30 March 2004);

On freezing eggs and embryos, see Anita Hamilton, "Eggs On Ice," Time (1 July 2006). See these New York Times articles on the topics indicated: Denise Grady, "Pregnancy Created Using Egg Nucleus of Infertile Woman" (14 October 2003); "Thawed Ovary Tissue Yields Health Embryo" (9 March 2004); "Report of First Birth for Cancer Survivor in a Tissue Transplant" (24 September 2004); "Woman Has Child After Receiving Twin's Ovarian Tissue" (8 June 2005); on AR risks see Rebecca L. Skloot, "The Other Baby Experiment" (22 February 2003); on AR in older women, see Mary Dunwald, "After 25 Years, New Ideas in the Prenatal Test Tube" ( 15 July 2003) and "For Couples, Stress Without the Promise of Success" (11 May 2004). For report on personal experiences, see S. G. Stolberg, "For the Infertile, A High-Tech Treadmill," New York Times (14 December 1997); on AR techniques, see Lawrence J. Kaplan and Rosemarie Tong, Controlling Our Reproductive Destiny (Cambridge: MIT Press, 1996). On fertility clinics see New York Times: Gina Kolata, "Reproductive Revolution Is

32

Jostling Old Views," (11 January 1993) and Glenn Kramon, "Infertility Chain: The Good and Bad in Medicine" (19 June 1992).

On transplanting ovaries from aborted fetuses, see Gina Kolata, "Fetal Ovary Transplant Is Envisioned," New York Times (6 January 1994). On problems over embryos, see Gina Kolata, "Frozen Embryos: Few Rules in a Rapidly Growing Field," New York Times (5 June 1992). The historical background on artificial insemination is presented in R. Snowden and G. D. Mitchell, The Artificial Family (London: Allen and Unwin, 1981).

The influential New York law regulating surrogacy is summarized in Lisa Belkin, "Childless Couples Hang on to Last Hope, Despite Laws," New York Times (28 July 1992). The Kim Cotton case is reported in Associated Press, "Surrogate Mother's Child in English Court Custody" (9 January 1985). For more recent legal issues, see New York Times articles by Stephanie Saul: “Building a Baby, with Few Ground Rules” (13 December 2009) and “Judge Calls Surrogate Legal Mother of Twins” (31 December 2009); and Adam Cohen, “A Legal Puzzle: Can a Baby Have Three Biological Parents?” (26 January 2010). For risks to surrogates as well as couples arranging surrogacies, see Saul, “Would-Be Parents Find Surrogate Agency Closed,” New York Times (21 March 2009); and Alan Zrembo and Kimi Yoshing, “Hoping For a Baby, Falling Prey to Fraud,” Los

33

Angeles Times (29 March 2009). Jane Brody summarizes developments in surrogacy in “Since Baby M, Much Movement in Surrogacy,” New York Times (21 July 2009). For surrogates in developing countries, see Amelia Gentleman, “India Nurtures Business of Surrogate Motherhood,” New York Times (10 March 2008). For accounts of personal issues in surrogacy, see Alex Kuczynski, “Her Body, My Baby,” New York Times Magazine (30 November 2008); and Sara Rimer, “No, the Stork Didn’t Bring You, But Mom and Dad Had Help” New York Times (12 July 2009).

The Social Context: Advances in Reproductive Cloning is indebted to: Michael Specter with Gina Kolata, "After Decades and Many Missteps, Cloning Success," New York Times (3 March 1997); Gina Kolata, "Panel Recommends a Ban on Human Cloning Efforts," New York Times (8 June 1997); "Clinton Seeks to Ban Human Cloning," Associated Press (9 June 1997); Sharon Begley, "Little Lamb Who Made Thee," Newsweek (10 March 1997), 53-59; Wray Herbert et al., "The World After Cloning," U.S. News & World Report (10 March 1997); Madeline Nash, "The Age of Cloning," (10 March 1997); Gina Kolata, "For Some Fertility Experts, Human Cloning is a Dream," New York Times (7 June 1997). For recent developments, see Gina Kolata, "In Big Advance in Cloning, Biologists Create 50 Mice," New York Times (27 July 1998). The Hall and Stillman "twinning" experiments are discussed in

34

Geoffrey Cowley, "Clone Hype" and David Gelman, "How Will the Clone Feel,” both in Newsweek (8 November 1993). The cloning story is told in Gina Kolata, Clone (N.Y.:1998) and in Ian Wilmut, Keith Campbell, and Colin Tudge, The Second Creation: Dolly and the Age of Biological Control (Cambridge, MA: Harvard University Press, 2000). Recent success in cloning animals is discussed in Anne Eisenberg, "Hello Kitty, Hello Clone," New York Times, (28 May 2005); on safety, see, Associated Press, "Milk and Meat of Clones Seem Safe, Study Says" (11 April 2006).

The Louise Brown Case Presentation is based on Newsweek (7 August 1978); Time (7 August 1978); and U.S. News and World Report (7 August 1978) and "Where Are They Now," Time (15 August 1996).The most recent information is from Simon Belgard, "Special Part for Test-Tube Louise's 25th," (London) Sunday Express (27 July 2003).

The Social Context: Postmenopausal Motherhood and the discussion in the Orientation draws on "World's Oldest Mother Just Wanted Baby," A.P. (27 April 1997); Gina Kolata, "A Record and Big Questions as a Woman Gives Birth at 63," New York Times 24 April 1997); Claudia Kalb, "How Old is Too Old?" Newsweek (5 May 1997); Margaret Carlson, "Old Enough to Be Your Mother," Time (10 January 1994); A.P. "California Woman, 53, Gives Birth to Twins" (11 November 1992); and the Gina Kolata, "When Grandmother Is the Mother, Until

35

Birth" New York Times (5 August 1991). Also see Gina Kolata, "Clinics Enter a New World of Embryo 'Adoption,'" New York Times (23 November 1997) and "Scientists Face New Ethical Quandaries in Baby-Making," (19 August 1997); and M.D. Lemonick, "Sorry Your Time is Up," Time (12 August 1996).

Information about the Baby M case in the Case Presentation is drawn from New York Times articles (4, 5, 6, 10, 26, 27 January 1987; 2, 3, 9, 10, 11, 17 February 1987; 5, 9, 10, 31 March 1987; 2 April 1987). The Calvert Case Presentation is based on Carol Lawson, "Couple's Own Embryos Used in Birth Surrogacy," New York Times (12 August 1990); Seth Mydans, "Surrogate Loses Custody Bid in Case Defining Motherhood," New York Times (22 October 1990); and Time (22 August 1990). The Ayala Case Presentation and the discussion of savior siblings is indebted to Lance Morrow, "When One Body Can Save Another," Time (7 June 1991) 54-58; Associated Press, "Mom, 43, Having Baby to Save Daughter's Life" (17 February 1990); Irene Chang, "Bone Marrow Baby Is Born to the Ayalas," Los Angeles Times (6 April 1990); the marriage of Anissa is reported in Rebecca Norris, "Made in Heaven," American Health (October 1994). The Decision Scenario on custody disputes and AR is indebted to Adam Liptak, "Custody After Civil Union Puts Two Rulings in Conflict," New York Times (8 September 2005). The Decision Scenario “Child of a Civil Union” is based on New York Times articles by Adam

36

Liptak: “Parental Rights Upheld for Lesbian Ex-Partner” (5 August 2006); “Ruling Lets Women Share Rights in Fight over Custody” (29 November 2006); “Judge Dissolves Civil Union in Custody Fight”(19 June 2007); and “Mother in Virginia Loses Bid to Void Same Sex Ruling in Vermont on Child Custody” (7 June 2008); and AP articles “Birth Mother Ordered to Surrender Daughter” (30 December 2009) and “Birth Mother Defies Order to Give Child to Ex-Partner” (2 January 2010).

Information in the Briefing Session on the possible risks of IVF was drawn from New York Times articles by Denise Grady, “Birth Defects Tied to Fertility Techniques” (18 November 2008); Roni Caryn Rabin, “Fertility Drugs and Ovarian Cancer Not Linked” (6 February 2009); and Gina Kolata, “Picture Emerging on Genetic Risks of IVF” (17 February 2009).

Chapter 5: Abortion The Social Context about McCorvey ("Roe") is from an

interview by Douglas S. Wood, "Who is Jane Roe?" CNN Interactive, http://cnn.com/SPECIALS/1998/roe.wade/stories/roe.profile . On birth impairments, see these New York Times articles: Kurt Eichenwald, "Push for Royalties Threatens the Use of Down Syndrome Test" (25 May 1997); Denise Grady, "Research Finds Risk in Early Test of Fetus," (27 January 1998), and the

37

Associated Press, "Small Amount of Folic Acid Bars Defects" (4 December 1997). For specific developmental or genetic anomalies, see Charles B.Clayman, ed. American Medical Association Encyclopedia of Medicine (New York: Random House, 1989).

Numbers in the Social Context: a Statistical Profile on Abortion are from: Alan Guttmacher Institute, "Facts on Induced Abortion in the United States," 2010, http://www.guttmacher.org ; Centers for Disease Control, National Vital Statistics Reports, vol. 5 (no.23), June 15, 2004; NBC News/Wall Street Journal Poll (May 12-16, 2005," Gallup Poll May 2-5, 2005," and CBS News Poll April 13-15, 2005," all available at http://www.pollingreport.com . For a profile of who gets abortions, the number performed per 1,000 women per state, national rates, and views on abortion, see Charles M. Blow, “Abortion’s New Battle Lines” New York Times (1 May 2010), and Lydia Saad, “More Americans ‘Pro-Life’ than ‘Pro-Choice’ for First Time,” at http://www.gallup.com/poll/118399/more-americans-pro-life-than-pro-choice 6/13/2010.

The Social Context on Plan B is based on facts from the following New York Times articles: Gina Kolata, "A Contraceptive Clears a Hurdle to Wider Access" (17 December 2003); "FDA to Delay Its Decision On Sale of Morning-After Pill (14 February 2004); Gardner Harris; "U.S. Rules Morning-

38

After Pill Can't be Sold Over the Counter" (7 May 2004); "Morning-After Pill Ruling Defies Norm (8 May 2004), "FDA's Role in Delaying Contraceptive is Criticized" (17 March 2005); "FDA Puts Off Decision on Sale of Birth Control" (26 August 2005); "Official Quits on Pill Delay at FDA" (1 September 2005); Gardiner Harris, "Report Details FDA Rejection of Next-Day Pill (14 November 2005); Stephanie Saul, "FDA. Shifts View on Next-Day Pill" (1 August 2006); Gardiner Harris, "FDA Gains Accord on Wider Sales of Next-Day Pill" (9 August 2006) and “F.D.A. Approves Broader Access to Next-Day Pill” (25 August 24 2006). For changes in age limits for morning-after pills, see New York Times editorials “Easier Access to Morning-After Pills” (25 March 2007), “Morning-After Pills” (24 April 2009) “Broader Access to Morning-After Pills (25 April 2009); and article by Gardiner Harris, “Agency Agrees to Ease Access to Emergency Contraceptive for 17-Year-Olds” (22 April 2009); The conservative Catholic view is argued in Hanna Klaus, "The Case Against Plan B," Ethics and Medicine, vol. 29 (March 2004), 3-4.

For recent accounts of the emergency contraception pill Ella, see New York Times articles by Gardiner Harris: “Panel Recommends Approval of After-Sex Pill to Prevent Pregnancy ELLA” (17 June 2010) and “F.D.A. Approves 5-Day Emergency Contraceptive” (13 August 2010); and by Pam Belluck: “Abortion Qualms on Morning-After Pill May Be

39

Unfounded” (5 June 2012), as well as the Time blog by Alexandra Sifferlin “Morning-After Pill Akin to Abortion? The Science Says No,” http://healthland.time.com/2012/06/07/morning-after-pill-akin-to-abortion-the-science-says-no/ . For Catholic opinion on ELLA, see Catherine Harmon, “Do ‘Morning-After Pills’ Cause Abortions?” (6 June 2012), http://www.catholicworldreport.com/Blog/1404/do_morningafter_pills_cause_abortions.aspx , and Phil Lawler, “Emergency Contraception, Pseudo-Science, and Media Bias” (7 June 2012), http://www.catholicculture.org/commentary/otn.cfm?id=917 .

Facts in Social Context: RU-486 are from New York Times reports by Gardiner Harris, "FDA Strengthens Warning on Abortion Pill" (15 November 2004); "Some Doctors Voice Worry Over Abortion Pill's Safety" ( 1 April 2006); "After Two More Deaths, Planned Parenthood Alters Method fort Abortion Pill" (17 March 2006); "Death Tied to Medical Abortion" (11 May 2006); "Scientists Will Gather to Discuss Safety of Abortion Pill" (11 May 2006); and Denise Grady, “Abortion Pill Study Suggests Way to Limit Infection” (9 July 2009).

The Social Context: The "Partial-Birth Abortion" Controversy uses information from these New York Times articles: Robin Toner, "Measure Banning Abortion Method Wins House Vote" (4 June 2003); Sheryl Gay Stolberg, "Senate Approves Bill to Prohibit Type of Abortion" (22 October 2003);

40

Richard Stevenson,"Bush Signs Ban on a Procedure for Abortions" (5 November 2003); Julia Preston, "Partial Birth Abortion Act Ruled Unconstitutional" (1 February 2006); Linda Greenhouse, "Justices to Review Federal Ban On Disputed Abortion Method" (21 February 2006),"Justices Agree to Expand Review of 2003 'Partial Birth' Ban" (20 June 2006).

Information used in the Social Context: Supreme Court Decisions After Roe v. Wade is drawn from the following: on Casey from New York Times (22 January 1992; 23 April 1992; 30 June 1992; 13 May 1993; 30 January 1994); on Webster from Newsweek (1 May 1989; 17 July 1989) and Time (1 May 1989); on the response to the Webster decision, Linda Greenhouse, "Supreme Court Upholds Sharp State Limits on Abortion," New York Times (4 July 1990). Difficulty in getting access to abortion is reported in New York Times (5 January 1992, 15 March 1992). The Court ruling on access to clinics and its background is reported in New York Times (25 January 1994 and 1 July 1994). See also Linda Greenhouse, "High Court Upholds Buffer Zone of 15 feet at Abortion Clinics" New York Times (20 February 1997) and, on the Colorado law, "Court Rules That Governments Can't Outlaw Types of Abortion" (28 June 2000). The Finkbine Case is based on Allen F. Guttmacher, The Case for Legalized Abortion (Berkeley, Calif.: Diablo Press, 1977), pp. 15-17. The facts in the Visna Case are from Suzanne Siegel

41

and Bill Roy, "Youth, Incest, and Abortion," Newsweek (10 August 1998).

For information on recent legal attempts to restrict access to abortion, see New York Times articles by Kirk Johnson: “Under Utah Legislation, Seeking Illegal Abortion Would Become a Crime” (1 March 2010) and “Utah Anti-Abortion Bill Citing ‘Reckless Act’ Is Withdrawn” (5 March 2010); James C. McKinley Jr., “Oklahoma Legislature Overrides Governor’s Vetoes to Approve Anti-Abortion Bills” (28 April 2010); and Kevin Sack, “States Enlisting Ultrasound to Raise the Bar for Abortions” (28 May 2010). See also Associated Press articles in the New York Times: “7 States Sue Government over U.S. Abortion Rule” (16 January 2009); “Kansas Governor Signs Bill on Fetal Images” (29 May 2009); “Arizona: New Abortion Restrictions” (24 June 2009); and “Both Sides Claim Victory in Ruling over South Dakota’s Abortion Law” (21 August 2009). For an argument that abortion rights are racist and genocidal, see Shaila Dewan, “To Court Blacks, Foes of Abortion Make Racial Case,” New York Times (27 February 2010). For the relation between abortion and health care reform, see New York Times articles: Peter Steinfels, “In Health Care Battle, a Truce on Abortion” (12 September 2009); the editorial “Abortion and Health Care Reform” (1 October 2009); and David D. Kirkpatrick, “Health Care Overhaul Revives Abortion Debate” (25 November 2009).

42

For an account of women’s experiences in a country where abortion is illegal, see Denise Grady, “The Deadly Toll of Abortion by Amateurs” New York Times (2 June 2009). See also Jennifer 8. Lee and Cara Buckley, “For Privacy’s Sake, Taking Risks on Pills to End Pregnancy” New York Times (5 January 2009) . For the recollections of a gynecologist who experienced the pre-Roe days, see Waldo L. Fielding, “Repairing the Damage, before Roe” New York Times (3 June 2008). For the equal effect of legalizing or banning abortion in other countries, see “Legal or Not, Abortion Rates Compare,” New York Times (12 October 2007). For the perceptions of women who have grown up with legal abortion, see “A Pregnant Pause,” New York Times (29 November 2009).

Chapter 6: Treating or Terminating: The Dilemma of Impaired Infants

The Bente Hindriks Case Presentation uses information from Sure Turton, "In the Baby's Last Seconds," http://www.timesonline.co.uk (posted 25 April 2005); John Schwartz,"When Torment Is Baby's Destiny, Euthanasia is Defended," New York Times (10 March 2005); Gregory Crouch, "A Crusade Born of a Suffering Infant's Cry," New York Times (19 March 2005); University Medical Center Gronigen, "Pediatricians Call for Nationwide Protocol,"

43

http://www.umcg.nl/asg/nl/english/nieuws (10 December 2004). These also serve as the source for the background of the Gronigen Protocol presented in the Lemuel Smith reading. The Protocol is presented and explained in two articles by A.A.E. Verhagen and P.J.J. Saur: "End-of-Life Decisions in Newborns: an Approach from the Netherlands," Pediatrics 116 (September 2005), 736-739 and "The Gronigen Protocol-- Euthanasia in Severely Ill Newborns," New England Journal of Medicine, 352 (10 March 2005), 959-962.

The Social Context on the problems of prematurity uses information from the following New York Times articles: Denise Grady, "Very Premature Babies Found Still at Risk" (20 July 2005); Nicholas Bakalar, ""Achievement of Preemies Found to be Near Normal" (28 February 2006). See also this series of articles from New York Times: Elisabeth Rosenthal, "As More Tiny Infants Live, Choices and Burdens Grow" (29 September 1991); Gina Kolata; "Parents of Tiny Infants Find Care Choices Are Not Theirs" (30 September 1991); Jane E. Brody, "A Quality of Life Determined by a Baby's Size" (30 September 1991); Sheryl Gay Stolberg, "As Premature Babies Grow, So Do Their Problems," (8 May 2009); Tamar Lewin, "Learning Problems of Premature Infants Are Broader Than Once Thought, Study Finds" (5 July 2000). For a discussion of the Saigal study, see Associated Press, "Tiniest Babies Face Hurdles to Learning" (7 February 2000). On the use of a hospital ethics

44

committee and the struggle of parents to make a decision about a life-sustaining treatment, see Lisa Belkin, First, Do No Harm (New York: Simon and Schuster, 1993).

The Baby Owens Case Presentation is based on a case presented in James M. Gustafson, "Mongolism, Parental Desires, and the Right to Life," Perspectives in Biology and Medicine 16 (1973): 529 - 557. The R. S. Duff and A.G.M. Campbell article is "Moral and Ethical Dilemmas in the Special-Care Nursery," New England Journal of Medicine 289 (1973): 75-78.

The Social Context The Baby Doe Cases is based on George J. Annas, "Disconnecting the Baby Doe Hotline," Hastings Center Report 13 (June 1983): 14-16 and "Baby Doe Redux," Hastings Center Report 13 (October 1983): 26-27; Bonnie Steinbock, "Baby Jane Doe in the Courts," Hastings Center Report 14 (February 1984): 13-19; Thomas H. Murray, "The Final Anticlimactic Rule on Baby Doe," Hastings Center Report 15 (June 1985): 5-9; and Time (14 November 1983); 107.

Statistics and information in the Briefing Session draws on “Birth Defects: Causes and Statistics,” Http://www.nature.com/scitable/topicpage/Birth-Defects-Causes-and-Statistics (2008). On prenatal testing, see the following New York Times articles: Amy Harmon, "In New Tests for Fetal Defects, Agonizing Choices for Parents" (20 June 2004) and Jane Brody, "35 and Pregnant, Assessing Risk

45

Becomes Easier" (22 December 2005). Statistics on when abortions are performed are calculated from the data in Barbara A. Kantrowitz, "A Bitter New Battle over Partial Birth Abortions," Time (17 March 1997).

The Messenger Scenario is based on Suzan Chira, "Medical and Legal Quandary in Father's Letting Baby Die," New York Times (3 August 1994).The Juli Scenario is based on a case reported in B. D. Colen, Karen Ann Quinlan: Dying in the Age of Eternal Life (New York: Nash, 1976), pp. 130-137. The Susan Roth Scenario is based on a case reported in Richard Trubo, An Act of Mercy (Los Angeles: Nash, 1973): 149-150. The Irene Towers Scenario is based on a Chicago case reported by the Associated Press (18 May 1981). The Dr. Daniel McKay Scenario is based on E. R. Shipp, "Mistrial in Killing of Malformed Baby Leaves Town Uncertain about Law," New York Times (18 February 1985). The Bartling case is based on George J. Annas, "Prisoner in the ICU: The Tragedy of William Bartling," Hastings Center Report 14 (December 1984): 28 - 29. The Virginia Crawford Scenario is based on a Baltimore case reported by United Press International (25 February 1979). The facts in the Shick case are from a United Press International story (8 February 1983); the Dohr-Engel case was reported in New York Times (20 March 1985); the Montigny case was reported by the Associated Press (8 August 1985). The original

46

policy endorsed by the Netherlands Supreme Court was outlined in a New York Times story (27 November 1984).

Information on the Ashley treatment discussed in the readings can be found in these articles from the Journal of Medical Ethics: N. Tan and I. Brassington, “Agency, Duties and the ‘Ashley Treatment,’” (November 2009), 35(11): 658-61 and S.D. Edwards, “The Ashley Treatment: A Step Too Far, or Not Far Enough?” (May 2008), 34(5): 341-3; and in L.Terry and A. Campbell, “Forever a Child: Analysis of the Ashley Case,” Paediatric Nursing (March 2008), 20(2): 21-5; and R. Coombes, “Ashley X: A Difficult Moral Choice,” BMJ (January 2007), 334 (7584): 72-3.

Chapter 7: Euthanasia and Assisted Suicide

The Quinlan Case Presentation is based on Phyllis Battelle, "The Story of Karen Quinlan," Ladies' Home Journal 93 (September 1976): 69-76, 172-180; B. D. Colen, Karen Ann Quinlan: Dying in the Age of Eternal Life (New York: Nash, 1976); and In the Matter of Karen Quinlan: The Complete Legal Briefs, Court Proceedings, and Decisions (Arlington, VA.: University Publications of America, 1975). On the death of Joseph Quinlan, see Robert Hanley's obituary in New York Times (11 December 1996).

47

The Case Presentation on Elizabeth Bouvia makes use of the following New York Times articles: Judith Cummings, “Husband Opposes Wife’s Wish to Starve to Death” (9 December 1983); “Judge Prepares to Rule on Death Plea” (13 December 1983); and “Plea by Patient for Starvation Barred by Court” (17 December 1983); UPI, “Court Allows Patient to Refuse Solid food (3 November 1983); “Patient’s Bid to Refuse Food Termed Suicide” (6 December 1983); “Hospital to Discharge Woman Seeking Death (25 December 1983); “Quadriplegic Will Appeal Order on Force-Feeding” (27 December 1983); “Court Rejects Decision in a Force-Feeding Case” (16 March 1986); and “Quadriplegic Loses Plea to Retain Morphine” (23 April 1986); AP, “Coast Hospital Ends Effort to Oust Quadriplegic Who Asks to Starve” (18 January 1984); and “Forced-Feeding Figure in New Court Fight” (22 April 1986); Wayne Biddle and Margot Slade, “’Withdrawal’ or Suicide?” (11 December 1983); “Doctors Delay Discharge of Paralyzed Woman” (29 December 1983); Walter Goodman, “Quadriplegic’s efforts to Die Stir Deep Legal and Ethical Issues” (3 January 1984); Robert Lindsey, “Ruling Is Upheld in Suicide Appeal” (20 January 1984); Marcia Chambers, “Woman Who Fought to Die Is Back in Court” (9 February 1986); “Paralyzed Woman Loses Bid to Stop Her Feedings” (22 February 1986); “Appeals Panel Says Quadriplegic Has Right to End Forced Feeding” (17 April 1986); “After Winning Right to

48

Starve, a New Fight” (20 April 1986); and “Patient Wins Morphine Plea: Transfer to New Facility Set” (23 May 1986);Editorial, “Condemned to Life” (24 April 1986); and Philip M. Boffey, “Pain Victims’ Care Faulted by Panel” (22 May 1986).

The Social Context on the Cruzan case draws from: Time (11 December 1989; 19 March 1990; 9 July 1990); Newsweek, Marcia Angell, "The Right to Die in Dignity" (23 July 1990); New York Times (17 November 1988; 29 July 1988; 25 July 1989; 19 January 1990; 26, 27 June 1990; 23 July 1990).

The timeline in the Terri Schiavo Case Presentation (as well as some information) is from Daniel Eisenberg, "Lessons of the Schiavo Battle," Time (4 April 2005), 23-30. Additional information is from these New York Times articles: Abby Goodnough, "Schiavo Dies, Ending Bitter Case Over Feeding Tube" (1 April 2005), "Schiavo Autopsy Says Brain Withered, Was Untreatable" (15 June 2005); Rick Lyman, "Protesters With Hearts on Sleeves and Anger on Signs" (17 March 2005); Abby Goodnough, "Courts Say No: Governor Bush in Schiavo Case" (23 March 2005); "Judge Declines to Order Feeding in Schiavo Case" (22 March 2005); "U.S. Court Begins Consideration of Schiavo Case" (21 March 2005); Carl Hulse and David Kirkpartick, "Moving Quickly, Senate Approves Schiavo Measure" (20 March 2005); Abby Goodnough and Carl Hulse, "Judge in Florida Rejects Effort by House" (19 March 2005); "Feeding Tube Case Roils Washington and Florida" (17 March

49

2005); "Judge Delays Feeding Tube Removal" (22 February 2005); "Judge Orders Feeding Tube to be Removed" (26 February 2005); "Florida Judge Authorizes Removal of Feeding Tube" (6 May 2004); and "Comatose Woman's Case Heard by Florida Court" ( 1 September 2004). The autopsy results are quoted in New York Times, "The Hard Facts behind a Heartbreaking Case (19 June 2005);" see also "No Evidence of Abuse of Schiavo (16 April 2005). For a discussion of legal issues, see George J. Annas, "'Culture of Life,' Politics at the Bedside," New England Journal of Medicine, 352 (21 April 2005), 1710-1715.

The Kevorkian Case Presentation draws material from Time (31 May 1993) and these New York Times articles: David Margolick, "Jurors Acquit Dr. Kevorkian in Suicide Case" (3 May 1994), "Michigan Panel Narrowly Backs Suicide" (5 March 1994); Lawrence K. Altman, "A How-to Book on Suicide Surges to the Top of the Best-Seller List" (August 1991); Jane Gross, "Voters Turn Down Legal Euthanasia" (7 November 1991). For Dr. Kevorkian’s murder conviction, see New York Times articles by Pam Belluck, “Dr. Kevorkian Is a Murderer, the Jury Finds” (27 March 1999); and Dirk Johnson, “Kevorkian Sentenced to 10 to 25 Years in Prison” (14 April 1999); and Monica Davey, “Kevorkian Freed After Years in Prison for Aiding Suicide” (2 June 2007).

50

Data in the Social Context on physician-assisted suicide in Oregon are from Kant Patel, "Euthanasia and Physician-Assisted Suicide Policy in the Netherlands and Oregon: A Comparative Study," Journal of Health and Social Policy, 19 (2004), 43, 49; James L. Wirth, Jr. and Howard Wineberg, "A Critical Analysis of Criticisms of the Oregon Death with Dignity Act," Death Studies, 29 (2005), 6 (Table 1). Statistics on the effect of the Washington state law legalizing assisted suicide come from William Yardley, “At Least 36 Died in Washington State in 2009 under New Assisted Suicide Law,” New York Times (5 March 2010) and from Robert Steinbrook, “Physician-Assisted Death—From Oregon to Washington State,” New England Journal of Medicine (11 December 2008), 359(24): 2513-5. On the legal issues see the following New York Times articles by Linda Greenhouse: "Justices Accept Case Weighing Assisted Suicide" (22 February 2005); "Justices Explore U.S. Authority over States and Assisted Suicide" (6 October 2005); "Supreme Court Justices Reject U.S. Bid to Block Assisted Suicide," (17 January 2006). Current information about assisted suicide can be found at http://nightingalealliance.org/cgi-bin/home.pl?section+3 . For attitudes toward doctor-assisted suicide, see Joseph Carroll, “Public divided over Moral Acceptability of Doctor-Assisted Suicide” at http://www.gallup.com/poll/27727/ (31 May 2007); CBS News, "Poll: Physician-Assisted Suicide" (24 November 2004; http://www.cbsnews.com ); Harris Poll,

51

"Majorities of U.S. Adults Favor Euthanasia and Physician Assisted Suicide by More Than Two-to-One" ( Harris Poll #32, 27 April 2005; http://www.harrisinteractive.com ).

The Donald Herbert Case Presentation uses information from Carolyn Thompson, "Firefighter Who Woke From Ten-Year Coma Dies," Chicago-Sun-Times (22 February 2006) and these New York Times articles: Robert McFadden, "After Ten Years Ex-Firefighter Recovers Memory and Speech" (3 May 2006); James Barron, "After Sudden Lucidity, Firefighter is Less Animated" (5 May 2006); Benedict Carey, "New Signs of Awareness Seen in Some Brain-Injured Patients" (8 February 2005).

Chapter 8: Organ Transplants and Scarce Medical Resources

The story on Steve Jobs’ liver transplant is based on Denise Grady and Barry Meier, “A Transplant That Is Raising Many Questions,” New York Times (22 June 2009); Tara Parker-Pope, “How Did Steve Jobs Get a Liver Transplant?” http://well.blogs.nytimes.com/2009/06/23/how-did-steve-jobs-get-a-liver-transplant/ (23 June 2009); Ray Hainer, “Did Steve Jobs’ Money Buy Him a Faster Liver Transplant?” at http://www.cnn.com/2009/HEALTH/06/24/.liver.transplant.priority.lists/index.htm ; and Susan Perry, “Did Steve Jobs Jump the

52

Liver Transplant Queue?” at http://www.minnpost.com/healthblog/2009/06/22 .

The heart-transplant Case Presentation is based on facts drawn from; James Steingold, "Inmate's Transplant Prompts Questions of Costs and Ethics," New York Times (31 January 2002); Sixty Minutes, "Change of Heart," CBS News (14 September 2003); Ethics Committee of the United Network for Organ Sharing, "Position Statement Regarding Convicted Criminals and Transplant Evaluation" at http://www.unos.org/resources/bioethics (no date).

The Brattle County, Texas, Case Presentation is fictional, but it represents the problem faced by dialysis centers when programs were starting. For the classic account of a committee at Swedish Hospital, Seattle, Washington, in 1961, see Shana Alexander, "They Decide Who Lives, Who Dies" Life (1962).

For the Sepulveda case and transplants for the mentally impaired, see Bruce Lambert, "Jesse Sepulveda Is Dead at Seven," New York Times (18 July 1993). For the Bosze case, see Isabel Wilkerson, "Search for Marrow Donor Questions Nature of Altruism and Child Rights," New York Times (30 July 1990) and "Setback for Boy Needing Marrow," Associated Press (28 September 1990). For the Benton case, see Terry Trucco, "Sales of Kidneys Prompt New Laws and Debate," New York Times (1 August 1990).

53

On selling organs, see the following New York Times articles: Peter S. Young, "Moving to Compensate Families in Human Organ Market" (8 July 1994); Sanjoy Hazarka, "India Debates Ethics of Buying Transplant Kidneys" (17 August 1992); Chris Hedges, "Egypt's Doctors Impose Kidney Transplant Curbs" (23 January 1992) and "Egypt's Desperate Trade" (22 September 1991). See also, "Trading Flesh around the Globe," Time (17 June 1991): 61. For a ban on organ tourism in China, see Mark McDonald, “Beijing Investigates Transplants for Tourists” New York Times (18 February 2009). The classic sociological study on dialysis and transplants is Renee C. Fox, "A Sociological Perspective on Organ Transplantation and Hemodialysis," Annals of the New York Academy of Sciences 169 (1970): 406-428. On defining death, see Stuart J. Youngner, Robert M. Arnold, and Rene Scapiro, The Definition of Death: Contemporary Controversies (Baltimore: Johns Hopkins University Press, 2001); and Darshak Sanghavi, “Last Decision,” New York Times Magazine (20 December 2009).

On the Case Presentation dealing with the shortage of Betaseron, see Associated Press, "Computer Lottery Will Distribute a New M.S. Drug," (2 September 1993); Tamar Lewis, "Prize in Unusual Lottery," New York Times (7 January 1994); and Laura Johanes, "New Drug Aims to Win over Sufferers," Wall Street Journal (20 April 1996). For policies

54

governing distribution of flu vaccine and swine flu vaccine during the 2009 shortages, see New York Times articles by Donald g. McNeil, Jr.: “65? Back of the Line, Pal” (22 November 2009) and “Shifting Vaccine for Flu to Elderly” (24 November 2009). For the distribution of ventilators, see New York Times articles by Cornelia Dean, “Who Gets a Ventilator in an Epidemic?” (25 March 2008) and Sheri Fink, “Worst Case: Choosing Who Gets the Breath of Life” (25 October 2009).

For a discussion of issues in organ transplants, see Ronald Munson, Raising the Dead: Organ Transplants, Ethics, and Society (New York: Oxford University Press, 2002). For issues involving health care policy and immunosuppressant drugs, see New York Times articles by Kevin Sack, “U. S. Cost-Saving Policy Forces Costly New Kidney Transplant” (14 September 2009) and “Plan for Kidney Drugs Spurs Division” (15 December 2009). “For survival rates, see the United Network for Organ Sharing website http://www.unos.org . On special topics see R. W. Evans et al., "The Potential Supply of Organ Donors," JAMA (1992) 259, 1546-1547; "P.A. Singer et al., "Ethics of Liver Transplantation with Living Donors," New England Journal of Medicine (1989) 321 , 620-622; S.J. Younger and R.M. Arnold, "Ethical, Psychosocial, and Public Policy Implications of Procuring Organs from Non-Heart-Beating Cadaver Donors," JAMA, 269 (1993) 2769-2774. For a plan to increase kidney donation by providing lifetime Medicare

55

coverage for living donors, see “Transplantation and Health Care Reform: How Will Life-Saving, Money-Saving (Kidneys) System Be Impacted?” (15 June 2010) at http://www.entrepreneur.com/tradejournals/article/print/2032322 .

Chapter 9: Distributing Health CareThe opening Case Presentation is a composite representing

the situation of the 44-47 million Americans lacking health insurance. The following analyses by Paul Krugman in the New York Times provide a useful portrait of the issues facing the financing of health care: "Pricing Drugs as if They Were Cars" (4 November 2005); "Pride, Prejudice, Insurance" (7 November 2005); "The Medical Money Pit" (15 April 2005); "Passing the Buck" (22 April 2005); "One Nation, Uninsured" (13 June 2005); "First Do More Harm" (16 January 2006); "Death by Insurance" (1 May 2006); "Our Sick Society" (5 May 2006). For the recent effects of the recession on health care policy, see New York Times articles by Jennifer Steinhauer, “Thousands Wait in line for Health Care That’s Free” (13 August 2009); Floyd Norris, “The Divided States of Health Care” (10 October 2009); Kevin Sack, “Hospital Cuts Dialysis Care for the Poor in Miami” (8 January 2010) and “Arizona drops Children’s Health Program” (19 March 2010); Reed Abelson, “Bill Stalled, Hospitals Fear Rising Unpaid Care” (9 February 2010); and Paul

56

Krugman, “California Death Spiral” (19 February 2010). See also in the New York Times “The Bankruptcy Toll” (8 September 2009) and “Nicholas D. Kristof, “Unhealthy America” (5 November 2009).

Information on the Affordable Care Act comes from New York Times articles by: Farhana Hossain, “How Different Types of People Will Be Affected by the Health Care Overhaul,” (24 March 2010); David Leonhardt, “In the Process, Pushing Back at Inequality” (24 March 2010); Tara Parker-Pope, “What You Need to Know in the First Year” (30 March 2010); “The New Landscape: A Primer” (30 March 2010); and Robert Pear and David M Herszenhorn, “As Bombast Escalates, a Primer on the Details of the Health Care Overhaul” (10 August 2009). Information on the Act can be found on the Whitehouse site http://www.whitehouse.gov/the-press-office/ and at http://www.healthcare.gov/law/about /index.html . For reaction to the law’s passage, see the following New England Journal of Medicine articles: John K. Iglehart, “Historic Passage—Reform at Last” (24 March 2010); Jonathan Gruber, “The Cost Implications of Health Care Reform” (12 May 2010); Jon Kingsdale, “Health Insurance Exchanges—Key Link in a Better-Value Chain,” (12 May 2010), all at http://heatlhcarereform.nejm.org/?p=3438&query+home ; and Robert A Berenson, “Implementing Health Care Reform—Why Medicare Matters” (8 July 2010).

57

For projections of the effects of the Act, see New York Times articles by: Michelle Andrews, “Doctor Shortage is Projected” (6 September 2009); Reed Abelson, “Betting a Health Exchange Will Bring Competition and Affordable Coverage” (6 October 2009); Michael Luo, “Some States Find Burdens in Health Law” (26 March 2010); and Robert Pear, “Coverage for Sick children? Check Fine Print” (29 March 2010), “Insurers to Cover Children’s Pre-existing Health Conditions” (31 March 2010), and “Study Points to Health Law’s Penalties” (24 May 2010); Gina Kolata, “Law May Do Little to Help Curb Unnecessary Care” (30 March 2010); Denise Grady, “Overhaul Will Lower the Costs of Being a Woman” (30 March 2010); Sarah Kershaw, “Mental Health Experts Applaud Focus on Parity” (30 March 2010); “Questioning the Cost of the Health Care Overhaul” (3 April 2010; Lesley Alderman, “For Many, Health Law Offers a Chance for Preventive Care” (10 April 2010); Roni Caryn Rabin, “Benefit for Uninsured May Still Pose Hurdle” (20 April 2010), “With Expanded Coverage for the Poor, Fears of a Big Headache” (27 April 2010), and “In Health Law, a Clearer View of Coverage” (18 May 2010); and Walecia Konrad, “High-Risk Insurance Pools to Begin Next Month” (26 June 2010);

Information on the Supreme Court decision on the constitutionality of the ACA comes from New York Times articles by: Adam Liptak, “Justices, by 5-4, Uphold Health Care

58

Law” and “Roberts’s Delicate Twist” (29 June 2012); Robert Pear, “Uncertainty over States and Medicaid Expansion” (29 June 2012); “The Court and Medical Care” (editorial) (29 June 2012); and Robert Pear and Michael Cooper, “Reluctance in Some States over Medicaid Expansion” (30 June 2012).

The Social Context: In Crisis Mode uses information from these New York Times articles: Robert W. Pear, "Health Spending at a Record Level" (8 January 2004); Milt Freudenheim, "Record Level of Americans Not Insured on Health" ( 27 August 2004); Robert Pear, "Nation's Health Spending Slows, but It Still Hits a Record" (10 January 2005) and "Growth of National Health Spending Slows Along With Drug Sales" (10 January 2006).

The discussion of rights in the Briefing Session is indebted to Joel Feinberg, "The Nature and Value of Rights," Journal of Value Inquiry 4 (1970): 243 - 257. See also Charles J. Dougherty, American Health Care: Realities, Rights, and Reforms (New York: Oxford University Press, 1988). For problems associated with managed care, see George Anders, Health against Wealth: HMOs and the Breakdown of Medical Trust (Boston: Houghton-Mifflin, 1996).

Chapter 10: Women and Medicine

59

The Case Presentation Angela Carder’s Ordeal is based on New York Times articles by Linda Greenhouse: “Appeals Court Vacates Forced-Caesarean Ruling,” (22 March 1988); “On Legal Call to Meet Medical Emergencies” (January 15, 1988), “Court in Capital Bars Forced Surgery to Save Fetus” (April 27, 1990), and “Hospital Sets Policy on Pregnant Patients’ Rights” (29 November 1990).

In the Social Context dealing with men's health and the backlash, statistics cited on causes of disease and death rates are from Centers for Disease Control; life expectancy figures are from National Vital Statistics Report, vol. 58, Table F: “Deaths and percentage of Total Deaths for the 10 Leading Causes of Death by Race: United States, 2005” (2009), p. 12; data about clinical trials are cited from the "Fact Sheet" prepared by Men's Health America, www.menshealthnetwork.org . Information about NIH budget figures and the proposed Office of Men's Health is from Dianna Thompson and Glenn Sacks, "When Men's Health Doesn't Count," which appeared first in Norfolk Virginian-Pilot (9 October 2002) and is posted on www.glennsacks.com . The text of the Men and Families Health Care Act of 2009 introduced in the House of Representatives in the 111th Session of Congress can be read at: http://thomas.loc.gov/cgi-bin/query/z?c111:H.R.2115:

60

Other information on health disparities between men and women comes from Roni Rabin, “Health Disparities Persist for Men, and Doctors Ask Why,” New York Times (14 November 2006).

The Social Context on the mammogram debate is drawn from New York Times articles by: Gina Kolata, “Panel Urges Mammograms at 50, Not 40” (November 16, 2009) and “Mammogram Debate Took Group by Surprise” (November 20, 2009); Jennifer Steinhauer and Kevin Sack, “New Mammogram Advice Finds a Skeptical Audience” (November 17, 2009); Natasha Singer and Reed Abelson, “Insurers Unlikely to Alter Policies in the Debate Over Mammograms” (November 18, 2009);and Kevin Sack, “Screening Debate Reveals Culture Clash in Medicine” (November 20, 2009). See also the New York Times editorial “The Controversy over Mammograms” (November 20, 2009). For the 1997 recommendations of the National Cancer Institute panel against yearly mammograms for women starting at age 40, see Gina Kolata, “Mammogram Talks Prove Indefinite” (24 January 1997) and “Another Group Switches on Frequency of Mammograms” (March 28, 1997). For the continuing controversy, see Roni Caryn Rabin, “Doctor-Patient Divide on Mammograms” (16 February 2012).

For the Social Context Pregnancy, Drugs, and the Law, see New York Times articles by: Marcia Chambers, “Dead Baby’s Mother Faces Criminal Charge on Acts in Pregnancy,” (9 October 1986) and “Charges against Mother in death of Baby

61

Are Thrown Out” (27 February 1987); and Tamar Lewin, “Courts Acting to Force Care on the Unborn” (23 November 1987).

Information in the Briefing Session comes from the following: The National Institutes of Health's Office of Research on Women's Health http://orwh.od.nih.gov serves as a focal point for women's health research conducted under the auspices of NIH. Its web site contains information about the Women's Health Initiative, research involving women, recruiting women as investigators, and the "Strategic Plan to Address Health Disparities among Diverse Populations of Women." The discussion of the lack of women as research participants is based on Office Of Minority Health, "Including Women and Minorities in Clinical Trials, Closing the Gap” (December/January, 1998), p. 11; Michael Wines, "In Research, the Sincerest Form of Concern is Money," New York Times (22 June 1997); the American Medical Association Council on Ethical and Judicial Affairs' report and the Public Health Service's report of the Task Force on Women's Health Issues are quoted in John M. Smith, Women and Doctors (New York: Delta Books,1992). The GAO report charging failures of researchers to enroll a sufficient number of women in studies is reported in Robert Pear, "Studies Find Research on Women Lacking," New York Times (29 April 2000). See Nancy Wartik, "Hurting More, Helped Less," New York Times (23 June 2002)

62

on whether women's complaints are taken seriously and dealt with appropriately. On the kinds of differences that necessitate the study of women, see New York Times articles by Denise Grady, “Many Women Face Hidden Risk of Heart Disease” (1 February 2006) and “In Heart Disease, the Focus Shifts to Women” (18 April 2006); and Anahad O’Connor “Really?” (31 March 2009). For the Men’s Health Act of 2003, see Marguerite Ro and Stephanie Chen, “Establishing an Office of Men’s Health” (July 2003) at http://www.communityvoices.org .

Chapter 11: African Americans and Medicine

The Tuskegee Case Presentation is based on the classic study by James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, New and Expanded Edition (New York: Free Press, 1993) and Alison Mitchell, "Survivors of Tuskegee Study Get Apology From Clinton," New York Times (17 May 1997). For an analysis of the roots of long-standing distrust of medicine by blacks, see V.N. Gamble, "Under the Shadow of Tuskegee," American Journal of Public Health (November, 1997), pp. 1773-1779.

For the Social Context on "ethnic" drugs like BiDil and DG031, see the following articles form the New York Times: Andrew Pollack, "Big DNA Files to Help Blacks Fight Diseases" (27 May 2003); Nicholas Wade, "Articles Highlight

63

Different Views on Genetic Basis of Race" (27 October 2004) and "Race-Based Medicine" (14 November 2004); Stephanie Saul, "U.S. to Review Drug Intended for One Race" (13 June 2005) and "FDA Approves a Health Drug for African-Americans" (24 June 2005); editorial on BiDil, "The First Race-Based Medicine" (19 June 2005);on DGO31, see Nicholas Wade "Genetic Find Stirs Debate on Race-Based Medicine” (11 October 2005). For more recent work on race-based medicine, see New York Times articles by Gina Kolata, “Genes Explain Race Disparity in Response to a Heart Drug” (29 April 2008); Andrew Pollack, “Patient’s DNA May be Signal to Tailor Drugs” (30 December 2008); Roni Caryn Rabin, “Blacks Suffer Heart Failure More than Whites” (19 March 2009) and “Findings May Explain Gap in Cancer Survival” (4 August 2009); and Nicholas Wade, “Genes Tied to Disparity in Treatment of Hepatitis C” (17 August 2009).

The original study behind the Social Context “Is Health about Status, Not Race?” is M. G. Marmot, G. D. Smith, S. Stansfeld, C. Patel, F. North, J. Head, I. White, E. Brunner, and A. Feeney, “Health Inequalities among British Civil Servants: the Whitehall II Study,” Lancet 337(8754) (8 June 1991), 1387-93. Sir Michael’s findings are the basis for his book The Status Syndrome: How Social Standing Affects Our Health and Longevity, (Holt Paperbacks: 2005). See also Patricia Cohen, “Forget Lonely. Life Is Healthy At the Top” New York Times

64

(15 May 2004). Information on the Oscar winner study comes from Katie Hafner, “Think the Answer’s Clear? Look Again,” New York Times (30 August 2010).

The Briefing Session draws from New York Times articles by: P.T. Kilborn, "Black Americans Trailing Whites in Health, Studies Say" (26 January 1998); S.G. Stolberg, "Cultural Issues Pose Obstacles in Cancer Fight" (14 March 1998); Richard Rothstein, "Linking Infant Mortality to Schooling and Stress" (6 January 2002); editorial, "Subtle Racism in Medicine (22 March 2002); James Sterngold, "Los Angeles Inner City Beset by Chronic Health Problems (2 May 2002); S.G. Stolberg, "Racial Disparity Is Found in AIDS Clinical Studies (1 May 2002); Nicholas Wade, "Race Is Seen as Real Guide to Track Roots of Disease" (30 July 2002); Gardiner Harris, “Research Center to Study Health-Race Link” (18 March 2008); Kevin Sack, “Research Finds Wide Disparities in Health Care by Race and Region” (5 June 2008) and “Doctors Miss Cultural Needs, Study Says” (10 June 2008); and Duff Wilson, “Race, Ethnicity and Care” (30 August 2009). See also Office of Minority Health Affairs, "Progress Report for Black Americans," n.d. (issued in 1998) and "Trends in the Health of African American Children," n.d. (issued in 1998). For studies on blacks and differential treatment, see Sheryl Gay Stolbert, "Blacks Found on Short End of Heart Attack Procedure," New York Times (10 May 2001) and Reuters, "Racial Gap in Cancer Survival is Not Biological,

65

Study Finds." The CDC review of "health indicators" is reported by Associated Press (24 January 2002). See also the following studies: Arnold M. Epstein, et al., "Racial Disparities in Access to Renal Transplantation," New England Journal of Medicine, 343 (23 November 2000), 1537-1544 and Peter B. Bach, et al., "Survival of Blacks and Whites after a Cancer Diagnosis," JAMA 287 (24 April 2002), 2106-2113. For an outstanding historical perspective, see Linda A. Clayton and W. Michael Byrd, An American Health Dilemma: A Medical History of African Americans and the Problems of Race: Beginnings to 1900 (New York: Routledge, 2000).

A good source of information on race-specific health issues is the web site: http://www.kaiserhealthnews.org/Daily-Reports. See, for example, “Building Diversity in Bone-Marrow Registries” (27 May 2009); “Minority Women More Likely than White Women to Have Major Health Problems” (10 June 2009);“Race Disparities Plague Treatment and Outcomes in Health Care” (19 June 2009); “Blacks with Equal Care Still More Likely to Die of Some Cancers” (8 July 2009); “Race Plays Role in Diagnosis and Treatment (24 July 2009); “Black Women May Need Different Mammogram Guidelines” (7 December 2009); and “For Black Women, Breast Cancer Strikes Younger” (7 December 2009);

Comparative figures for disease incidence and mortality for all ethnic groups are from Health, United States, 2010: In Brief

66

(Washington, D.C.: Department of Health and Human Services, Centers for Disease Control and National Center for Health Statistics, 2010), available at http://www.cdc.gov/nchs/data/hus/hus10_InBrief.pdf .I have also used statistics from Highlights in Minority Health & Health Disparities February, 2010, from the Office of Minority Health Resources Center of the Department of Health and Human Services, available at http://www.cdc.gov/omhd/Highlights/Highlight.htm . Information on health disparities can also be found through Kaiser Health News at http://www.statehealthfacts.org and in National Vital Statistics Reports, Vol. 58, No. 8, December 23, 2009. For a survey of the range of ethnic health issues, see Thomas A. LaViest, ed., Race, Ethnicity, and Health: A Public Health Reader (San Francisco: Jossey-Bass, 2002).

Chapter 12: AIDS-HIV

The Case Presentation on Darren Chiacchia comes from New York Times articles by Katie Thomas, “Equestrian Is Facing H.I.V.-Related Felony Charge” (12 April 2010); and Abigail Zuger, M.D., “With AIDS, Time to Get beyond Blame” (20 April 2010. For another case, see New York Times articles by Michael Cooper, “Drifter Says He Had Sex with Up to 300” (19 July 1999); and Danny Hakim, “Man Who Spread H.I.V. May

67

Be Held” (13 April 2010). The Thompson Case is based on accounts by a number of people with AIDS.

For the Social Context Pandemic, see New York Times articles by Celia W. Dugger, “Progress Has Been Made in Fight against AIDS, but Not Enough, U.N. Report Says” (3 June 2008); “Report Says Bank’s AIDS Efforts Are Failing” (1 May 2009); “U.N. Cites Global Rise in Detection and Treatment of AIDS” (1 October 2009); and “As Donors Focus on AIDS, Child Illnesses Languish” (30 October 2009). See also “Drugs ‘Could Stop Spread of AIDS’” (21 February 2010) at http://news.bbc.co.uk/go/pr/fr/-/2/hi/science/nature/8526690.stm

For current information on HIV/AIDS in South Africa see http://www.avert.org/aidssouthafrica.htm . For some history of government policy in South Africa, see New York Times articles by Celia W. Dugger, “Rift over AIDS Treatment Lingers in South Africa” (9 March 2008); “Study Cites Toll of AIDS Policy in South Africa” (26 November 2008); “South Africa Is Seen to Lag in H.I.V. Fight” (20 July 2009); “South African Leader, Rejecting Predecessor’s Stance, Rallies Nation to Fight AIDS” (1 November 2009); and “Breaking with Past, South Africa Issues Broad AIDS Policy” (2 December 2009).

The statistical picture of HIV-AIDS country by country, the use of antiretroviral therapies, and steps toward a vaccine as presented in the Social Context, see http://www.unaids.org . See for a discussion of therapies in the under-developed countries,

68

see the World Health Organization website at http://www.who.int/hiv . On the history of AIDS in Africa and the efforts to deliver treatment, see New York Times: Rachel L. Swarns, "AIDS Is Chief Cause of Death in South Africa, Study Says" (16 October 2001) and "Newest Statistics Show AIDS Still Spreading in Africa" (1 March 2001). On financing treatments, see David E. Sanger, "Bush Says U.S. Will Give $200 Million to World AIDS Fund" (11 May 2001); Jane Perlez, "U.N. Chief Calls on U.S. Companies to Donate to AIDS Fund" (1 June 2001). On current treatments of HIV in the third world, see "Infant Drugs for HIV Put Mothers at Risk," New York Times (24 February 2003) and Lawrence K. Altman, "U.S. Speeding up Approval Steps for AIDS Drugs," New York Times (17 May 2004).

For the Obama policy on global AIDS, see New York Times articles by Sheryl Gay Stolberg, “Obama Seeks a Global Health Plan Broader than Bush’s AIDS Effort” (6 May 2009); Donald McNeil, Jr., “Obama Is Criticized on AIDS Program” (9 October 2009); and Julia Preston, “Obama Lifts a 22-Year Ban on Entry into U.S. by H.I.V.-Positive People” (31 October 2009). See also “HIV/AIDS Policy Fact Sheet: U.S. Federal Funding for HIV/AIDS: The Presidents FY 2011 Budget Request” (February 2010) and “U.S. Global Health Policy Fact Sheet: The Global HIV/AIDS Epidemic” (November 2009) at www.kff.org ; Global Health Reporting.org, “HIV/AIDS: Facts

69

at a Glance” for statistics from 2007-2009; and UNAIDS, World Health Organization, “Global Facts and Figures” (2009) at https://www.unaids.org/.../unaids/.../factsheet/2009/2009 .

Information for the Social Context Testing AIDS Drugs in the Third World comes from New York Times articles by Sheryl Gay Stolberg, “U.S. AIDS Research Abroad Sets Off Outcry Over Ethics” (18 September 1997) and “Placebo Use Is Suspended In Overseas AIDS Trials” (19 February 1998) and Howard W. French, “AIDS Research in Africa: Juggling Risks and Hopes” (09 October 1997).

Information for the Social Context The Origin of the AIDS Virus comes from New York Times Opinion piece “The Source of AIDS” (2 February 1999) and articles by Gina Kolata, “The Genesis of an Epidemic: Humans, Chimps and a Virus” (4 September 2001) and Lawrence K. Altman, “Chimp Virus Is Linked to H.I.V.” (26 May 2006).

For the Social Context Searching for the AIDS Vaccine, see New York Times articles by Donald G. McNeil, Jr., “Vaccine for AIDS Passes Trial; Limits of Success to Be Studied”( 25 September 2009); “If AIDS Went the Way of Smallpox” (27 September 2009); “Success of AIDS Vaccine Trial Is at Issue” 11 October 2009); and “AIDS Vaccine Trial Shows Only Slight Protection” (21 October 2009); and by Seth Berkley, “Have Faith in an AIDS Vaccine” (19 October 2009). See also Katherine Harmon, “Renewed Hope for an AIDS Vaccine:

70

Despite Questions, the Thailand Trial Spreads Optimism,” Scientific American (16 November 2009). Earlier efforts to develop a vaccine are summarized at http://www.gatesfoundaton.org/GlobalHealth ; see also Andrew Pollack, "Large Trial Finds AIDS Vaccine Fails to Stop Infection," New York Times (24 February 2003), and Reuters, India's AIDS Vaccine Trials Enter Crucial Stage," (9 February 2006). Additional information is found at the Centers for Disease Control website http://www.cdc.gov . On microbicides, see Lawrence K. Altman, "Tests Begin on New Drugs to Protect Women from Contracting HIV," New York Times (13 July 2004).

For AIDS in the U.S., see “A Glance at the HIV/AIDS Epidemic” at http://www.cdc.gov/hiv/resources/factsheets ; “HIV/AIDS among African Americans” at http://www.cdc.gov/hiv/topics/aa ; and “HIV and AIDS among Gay and Bisexual Men” at http://www.cdc.gov/nchhstp/newsroom/docs/FastFacts-MSM-FINAL508COMP.pdf . See also New York Times articles by Sarah Kershaw, “As New H.I.V. Cases Drop over All, a Worrying Rise among Young Gay Men,” (2 January 2008); Lawrence K. Altman, “U.S. Blacks, If a Nation, Would Rank High on AIDS” (30 July 2008) and “H.I.V. Study Finds Rate 40% Higher than Estimated” (3 August 2008); and Gardiner

71

Harris, “Detailed Study on Spread of H.I.V. in U.S.” (12 September 2008).

For recent discoveries about the virus, see BBC News, “Structure of HIV Genome ‘Decoded’” (8 June 2009) at http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8186263.stm ; and Lawrence K. Altman, “New Strain of H.I.V. Is Discovered” (5 August 2009). For AIDS testing, see New York Times articles by David Tuller, “Despite Benefits, Tests for New H.I.V. Infection Are Not Widely Used” (1 May 2009); and Susan Okie, “Fighting H.I.V., a Community at a Time” (27 October 2009). For practical information on HIV tests, see http://www.cdc.gov/hiv/topics/testing/resources and “Testing HIV Positive—Do I Have AIDS?” at http://aidsinfo.nih.gov/guidlines .

For current treatments, see New York Times articles by Lawrence K. Altman, “Researchers look to Pill, Taken Daily, to Avert H.I.V.” (4 August 2008); and Roni Caryn Rabin, “In Treating H.I.V. Infection, Sooner Is Better, Study Finds” (30 April 2009); “Public Health Agency Weighs Routine Circumcision to Fight H.I.V. Risk,” (24 August 2009); and “Tool to Offer Fast Help for H.I.V. Exposure” (8 September 2009); and Steve Sternberg, “Early HIV Treatment Radically Boosts Survival” USA Today (27 October 2008).

72

Part VI: Foundations of Bioethics: Ethical Theories, Moral Principles, and Medical Decisions

My discussion of ethical theories is generally indebted to Richard B. Brandt, Ethical Theory (Englewood Cliffs, N.J.: Prentice Hall, 1959) and William K. Frankena, Ethics, 2nd ed. (Englewood Cliffs, N.J.: Prentice-Hall 1973).

My treatment of utilitarianism owes much to the excellent introductory essay by Paul Taylor in his Problems of Moral Philosophy (Belmont, Calif.: Dickenson, 1971), pp. 137 - 151. Mill's statement of the principle of utility is from Utilitarianism (Indianapolis: Bobbs-Merrill, 1971), p. 18; the second quotation is from p. 24. In the discussion of act and rule utilitarianism and their attendant difficulties, I am indebted to Michael D. Bayles and Kenneth Henley's introduction in their Right Conduct (New York: Random House, 1983), pp. 86-94, and to Carl Wellman, Morals and Ethics (New York: Scott, Foresman, 1975), pp. 39-42, 47-50. The quotation is from p. 49.

The statements of Kant's categorical imperative are more paraphrases than literal translations. They are from his Groundwork of the Metaphysics of Morals, translated by H. J. Paton (New York: Harper & Row, 1964). Other translations and editions are easily available. Some of the criticisms of Kant are based on those of Brandt (Ethical Theory, pp. 27 - 35) and Frankena (Ethics, pp. 30-33).

73

The quotation from Ross is from his The Right and the Good (New York: Oxford University Press, 1930), p. 24. The prima facie duties are found on pp. 21-22 and the "rules" for resolving conflict on pp. 41-42. My exposition is indebted, in part, to G. J. Warnock, Contemporary Moral Philosophy (New York: St. Martin's Press, 1967) and to Fred Feldman, Introductory Ethics (Englewood Cliffs, N. J.: Prentice-Hall, 1978), pp. 149-160.

Rawls's theory is presented in A Theory of Justice (Cambridge, Mass.: Harvard University Press, 1971). The principles are quoted from p. 203; "natural duties" are discussed on pp. 340 - 350. My statement of the theory is indebted to Norman Daniels's introduction to Reading Rawls (New York: Basic Books, 1976). The first criticism is one made by Thomas Nagel, "Rawls on Justice" (Daniels, pp. 1-16) and Ronald Dworkin, "The Original Position" (Daniels, pp. 16-53). The second criticism is urged by R. M. Hare, "Rawls's Theory of Justice" (Daniels, pp. 81 - 108) and David Lyons, "Nature and Soundness of the Contract and Coherence Arguments" (Daniels, pp. 141-169).

For Aquinas's view on "man," see his Summa Theologica, Part II (First Part), vol. 6, translated by Fathers of the English Dominican Province (London: Burns Oates and Washbourne, 1914). For his views on natural law and law in general, see vol. 8, "Treatise on Law." For an interpretation of Aquinas, see

74

Frederick Copleston, A History of Philosophy, vol. 2, part 2 (New York: Doubleday, 1962), pp. 126 - 131, to which my account is indebted. For the presentation of the current Catholic natural law view I am indebted to Charles J. McFadden, Medical Ethics, 6th ed. (Philadelphia: F. A. Davis, 1967). The doctrine of double effect is treated on pp. 121 - 155; euthanasia, extraordinary means, and medical experimentation, pp. 239 - 270. The quotations from the Directives are from the appendix in McFadden: abortion, p. 441, euthanasia, p. 442.

My discussion of moral principles is indebted to Tom. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 1979), pp. 56 - 201, and to Beauchamp's and LeRoy Walters's introduction in Contemporary Issues in Bioethics, 2d ed. (Belmont, Calif.: Wadsworth, 1982), pp. 26 - 32. The discussion of liberty-limiting principles is based on Joel Feinberg, Social Philosophy (Englewood Cliffs, N.J.: Prentice-Hall, 1973), pp. 20 - 33, as is the discussion of principles of justice, pp. 98 - 119.

The account of virtue ethics is indebted to Louis P. Pojman, Ethics: Discovering Right and Wrong, 2nd ed. (Belmont, California: Wadsworth Publishing Company, 1995), 166-181. See also Alasdair McIntyre, After Virtue (University of Notre Dame Press, 1981), the book that revived current discussions of virtue ethics, and Philippa Foot, Virtues and Vices (Oxford:

75

Blackwell, 1978), a collection of essays by a virtue ethicist who addresses problems in medical ethics.

For the beginnings of feminist-care ethics, see Carol Gilligan, In a Different Voice (Cambridge, MA: Harvard University Press, 1982); for its philosophical development, see Annette Bair, Postures of the Mind (Minneapolis: University of Minnesota Press, 1985). Care ethics and feminist ethics are points of view still developing, and my sketch of them represents the ideas of no one theorist. Nell Noddings in Caring: A Feminine Approach to Ethics and Moral Education (Berkeley: University of California Press: 1988) argues that everyone ought to follow the ethic of caring and abandon abstract principles. Some feminist writers are concerned not to have the emphasis on care overwhelm feminism and its concerns. See Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Philadelphia: Temple University Press, 1992) and Helen B. Holmes and Laura M. Purdy, ed. Feminist Perspectives in Medical Ethics (Bloominington: Indiana University Press, 1992). [end]