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.h
tm .
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 CDCs Recommendations of the Advisory Committee on
Immunization Practices (ACIP) (23 March 2007) at
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5602a1.htm
The account of the response to reporting adverse reactions to
Gardasil draws from Radha Chitale, CDC Report Stirs
Controversy for Mercks 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
Womens 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 Placebo (4 May 2010); and Nicholas Bakalar,
 4

Perceptions: Positive Spin Adds to a Placebos 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 Fadimans 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 Consent

On the face-transplant Case Presentation on Connie Culp,
see Connie Culp, Nations 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 OConner, 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, Worlds 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
against the FDA is drawn from the following New York Times
 8

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 Wont 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 Medicines 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.
Hornblums 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
prisoners and research subjects. I am also indebted to Evelyne
 9

Schusters 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 Welsomes The Plutonium Files: Americas
Secret Medical Experiments in the Cold War (New York: Delta
Books, 1999) tells the whole story in detail. The ethical issues
 10

are addressed explicitly in Chapter 5 of Jonathan D. Morenos

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
Kristofs New York Times article Unmasking HorrorA
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 Control

Information 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 Alzheimers risk, see Denise Grady, Learning of Risk of
Alzheimers 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 January 2010); Tara
 16

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
Patients Genes, Seeking Treatment Clues, New York Times (6
November 2008). On disease risk associated with genes in the
 17

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
information on the law, see New York Times articles by Amy
 18

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.ht
m (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-
05-11 . See also articles by Sandra M. Jones and Bruce Japsen,
 19

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).
For the adverse events in France, see "Gene Tampering," Time
 20

(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 Womans 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 Life, Scientists
Transplant Genome of Bacteria (29 June 2007); A Dissenting
 21

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).
Information in the Social Context on the scientific
background to the embryonic stem-cell debate comes from the
 22

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 Bushs Strict Limits on Stem Cell Research (10
March 2009); David Stout and Gardiner Harris, Obama
Reversing Stem-Cell Limits Imposed by Bush (7 March 2009);
Gardiner Harris, Obama Plans to Retain some Limits on Stem
 23

Cells (18 April 2009); Rules Will Allow Financing for Old
Stem Cell Lines (7 July 2009); U.S. Judge Rules against
Obamas 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."
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
 24

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
problems it poses for rights is considered by Susan West,
"Genetic Testing on the Job," Science 82 (September 1982), p.
16.
 25

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,
"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
 26

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).
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
 27

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 Parkinsons New York Times (22 June
2007); Pallab Ghosh, Gene Therapy Aids Youths Sight,
BBC News (27 April 2008); Daniel J De Noon, Major
Advance in HIV Gene Therapy, WebMD Health News (16
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
 28

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
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
 29

Doctors 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
"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
 30

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
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
 31

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
Jostling Old Views," (11 January 1993) and Glenn Kramon,
"Infertility Chain: The Good and Bad in Medicine" (19 June
1992).
 32

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
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
 33

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 Didnt
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
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
 34

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 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
 35

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 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
 36

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
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
 37

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,
Abortions 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-
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
 38

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 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
 39

ELLA, see Catherine Harmon, Do Morning-After Pills Cause

Abortions? (6 June 2012),
http://www.catholicworldreport.com/Blog/1404/do_morningafte
r_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);
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
 40

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
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
 41

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
Governors 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 Dakotas
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).
For an account of womens 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 Privacys Sake,
Taking Risks on Pills to End Pregnancy New York Times (5
 42

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,"
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:
 43

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 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
 44

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
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).
 45

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
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
 46

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).
The Case Presentation on Elizabeth Bouvia makes use of
the following New York Times articles: Judith Cummings,
Husband Opposes Wifes 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
 47

Refuse Solid food (3 November 1983); Patients 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,
Quadriplegics 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
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,
 48

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
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
 49

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. Kevorkians 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).
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
 50

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, "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
 51

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.prior
ity.lists/index.htm ; and Susan Perry, Did Steve Jobs Jump the
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
 52

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).
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
 53

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
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).
 54

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
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 Care

 55

The 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 Thats 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 Childrens Health
Program (19 March 2010); Reed Abelson, Bill Stalled,
Hospitals Fear Rising Unpaid Care (9 February 2010); and Paul
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
 56

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 laws passage, see the following New England Journal of
Medicine articles: John K. Iglehart, Historic PassageReform
at Last (24 March 2010); Jonathan Gruber, The Cost
Implications of Health Care Reform (12 May 2010); Jon
Kingsdale, Health Insurance ExchangesKey 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 ReformWhy
Medicare Matters (8 July 2010).
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
 57

2010), Insurers to Cover Childrens Pre-existing Health

Conditions (31 March 2010), and Study Points to Health
Laws 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
Law and Robertss 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
 58

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

The Case Presentation Angela Carders 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
 59

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:
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,
 60

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 Babys
Mother Faces Criminal Charge on Acts in Pregnancy, (9
October 1986) and Charges against Mother in death of Baby
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
 61

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) 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 OConnor Really? (31 March 2009).
For the Mens Health Act of 2003, see Marguerite Ro and
Stephanie Chen, Establishing an Office of Mens Health (July
2003) at http://www.communityvoices.org .

Chapter 11: African Americans and Medicine

 62

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
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, Patients DNA May be Signal to Tailor
 63

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 Michaels 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 (15
May 2004). Information on the Oscar winner study comes from
Katie Hafner, Think the Answers 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
 64

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,
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).
 65

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
(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
 66

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
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 Banks 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
 67

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 Predecessors 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,
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
 68

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 Bushs 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
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).
 69

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:
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,
 70

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
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
 71

http://www.cdc.gov/hiv/topics/testing/resources and Testing

HIV PositiveDo 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).

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
 72

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).
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:
 73

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
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
 74

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:
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
 75

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]