notes and references chapter 1: research … [munson; intervention and reflection, 8th ed.] notes...
TRANSCRIPT
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[MUNSON; INTERVENTION AND REFLECTION, 8TH ED.]
NOTES AND REFERENCES
Chapter 1: Research Ethics and Informed Consent
On the face-transplant Case Presentation, information is drawn from the
following New York Times articles: Lawrence K. Altman, “French in First, Use
Transplant to Repair a Face” (1 December 2005) and “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). Information was also drawn
from Associated Press, “Face Transplant Woman Says She's Okay,” (7 December
2005) and Adam Sage, “Face Transplant Woman to Profit from Picture Sales,”
Times of London (8 December 2005).
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): 5. The
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 Sissela Bok, “The Ethics of Giving Placebos,” Scientific American
231 (November 1974): 17-23. 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). 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).
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 tamoxifen trial, see, “Scientists
Cancel Tamoxifen Test,” Associated Press (7 April 1998). On foreign drug
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testing, see Elisabeth Rosenthal, “For More Drugs, First Test Is Abroad,” New
York Times (7 August 1990) and Warren E. Leary, “U.S. Ethics Are Questioned by
Critics of Vaccine Test in Italy and Sweden,” New York Times (13 March 1994).
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). 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 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); “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.) On The Social
Context on Phase Zero trials, see the account in Andrew Pollack, “In Drug
Research, the Guinea Pigs of Choice are Now, Well, Human,” New York Times (4
August 2004).
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 detailed
discussion, see Ronald Munson, Raising the Dead: Organ Transplants, Ethics,
and Society (New York: Oxford University Press, 2002), Chapter 7.
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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). On the Pernkopf anatomy, see
Nicholas Wade, “Doctors Question Use of Nazi's Medical Atlas,” New York Times
(26 November 1996).
Chapter 2: 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.
On development of licensing procedures for physicians, see John Duffy,
The Healers: The Rise of the Medical Establishment (New York: McGraw-Hill,
1977). 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 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, New York Times (15 May 2005).
Facts in the Vegan Baby Case are 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).
Material in the Case Big Brother vs. Big Mac is drawn from these New York
Times articles: N.R. Kleinfield, “Diabetes and Its Awful Toll Quietly Emerges
as a Crisis” (9 January 2006), “Living at an Epicenter of Diabetes, Defiance,
and Despair” (10 January 2006); Ian Urbina, “In the Treatment of Diabetes,
Success Often Does Not Pay” (11 January 2006); Daniel Williams, “Bent Out of
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Shape,” Time (11 September 2006); Reuters, “Obesity Health Costs Exceed
Smoking, Drugs” (3 June 2005); Kate Walker, “Diabetes, Prevention, and Cause,”
UPI (26 October 2006).
The Social Context on pregnancy and prosecution is based on: 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; 30 August 1988) for effects of alcohol and other drugs; (4 May
1989; 9 May 1989) for the Illinois cases; (2 February 1990) for a Wyoming
case; (28 October 1992) 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). 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.
Chapter 3: HIV/AIDS
On 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 unaids.org. For a discussion of therapies in the
underdeveloped countries, see the World Health Organization at 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 Barbara Crossette,
“Annan in Washington to Seek AIDS Funds” (10 May 2001); David E. Sanger, “Bush
Says U.S. Will Give $200 Million to World AIDS Fund” (11 May 2001); Jane
Perlez, “U.N. Chief Calls on U.S. Companies to Donate to AIDS Fund” (1 June
2001). On current treatments of HIV in the third world, see “Infant Drugs for
HIV Put Mothers at Risk,” New York Times (24 February 2003) and Lawrence K.
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Altman, “U.S. Speeding Up Approval Steps for AIDS Drugs,” New York Times (17
May 2004).
On the development of combination therapy, see Michael Waldhoz, “AIDS
Drug Cocktails in Use Since 1996 Cause Steep Drop in Deaths Study Finds,” Wall
Street Journal (26 March 1998); A.P.”AIDS Related Deaths Fall by 26 percent in
1996” (10 January 1998); L.K. Altman, “AIDS Deaths Drop 48% in New York,” New
York Times (2 February 1998); on emerging drug resistance, see L.K. Altman,
“Study Reports Drug Resistant Strains Have Increased to 14 Percent Among New
HIV Cases,” New York Times (7 February 2001). The Thompson Case is based on
accounts by a number of people with AIDS. On AIDS and suicide, see Seth
Mydans, “AIDS Patients' Silent Companion Is Often Suicide,” New York Times (25
February 1990).
The efforts to develop a vaccine are summarized at
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 cdc.gov. On
microbicides, see Lawrence K. Altman, “Tests Begin on New Drugs to Protect
Women From Contracting HIV,” New York Times (13 July 2004).
Chapter 4: Race, Gender, and Medicine
The Tuskegee Case Presentation is based on the classic study, 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).
The best guide to statistics in this area, one I have drawn from
heavily, is Health United States, 2006 (Washington, D.C.: Department of Health
and Human Services, Centers for Disease Control and National Center for Health
Statistics, 2006). The publication is available at cdc.gov/nchs/hus.htm. 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,
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2002).
The section on African American health issues draws from the New York
Times articles: P.T. Kilborn, “Black Americans Trailing Whites in Health,
Studies Say” (26 January 1998); S.G. Stolberg, “Cultural Issues Pose Obstacles
in Cancer Fight” (14 March 1998); Richard Rothstein, “Linking Infant Mortality
to Schooling and Stress” (6 January 2002); editorial, “Subtle Racism in
Medicine” (22 March 2002); James Sterngold, “Los Angeles Inner City Beset by
Chronic Health Problems” (2 May 2002); S.G. Stolberg, “Racial Disparity Is
Found in AIDS Clinical Studies” (1 May 2002); Nicholas Wade, “Race Is Seen as
Real Guide to Track Roots of Disease” (30 July 2002). 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 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): 1773-1779. For studies on blacks and
cardiac catheterization 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 AP (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; 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).
The discussion of the health problems of American Indians and Alaska
Natives is based on Office of Minority Health Affairs, “Progress Report for
American Indians and Alaska Natives,” n.d. (2005); Jo Ann Kauffman and Yvette
K. Joseph-Fox, “American Indian and Alaska Native Women,” in Marcia Bayne-
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Smith, ed. Race, Gender, and Health, (Thousand Oaks, CA: Sage Publications,
1996): 121-171, and Indian Health Service, “Comprehensive Health Care Program
for American Indians and Alaska Native” (Indian Health Service website posted
16 February 1999; see updates 2005). On the problems of Asian Americans and
Pacific Islanders, see R.H. True and Tessi Guillerno, “Asian/Pacific Islander
American Women,” in Bayne-Smith, pp. 94-120 and Department of Health and Human
Services, “Progress Review: Asian Americans and Pacific Islanders” (13
September 1997). On the problems of Hispanics/Latinos, see A.L. Gichaello,
“Latino Women,” in Bayne-Smith, pp. 21-171, and Department of Health and Human
Services, “Progress Review: Hispanic Americans,” 29 April 1997.
On the costs of treating undocumented immigrants, see the following by
Robert Pear from New York Times: “U.S. Is Linking Status of Aliens to Hospital
Aid” (9 August 2004); “Payments to Help Hospitals Care for Illegal Immigrants”
(9 May 2005).
On bridging cultural gaps, see the following New York Times articles:
Gina Maranto, “Nurses Bridge Cultures to Give Better Care” (1 October 2002)
and Lynette Clemetson, “A Neighborhood Clinic Helps Fill the Gaps for Latinos
Without Health Care” (6 October 2002). The definitive book illustrating
medical cultures in conflict is Anne Fadiman, The Spirit Catches You and You
Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two
Cultures (New York: Farrar, Straus, and Giroux, 1997).
Comparative figures for disease incidence and mortality for all ethnic
groups are from Health United States, 2006. I have also used information
supplied by the Office of Minority Health Resources Center of the Department
of Health and Human Services.
The National Institutes of Health's Office of Research on Women's Health
nih.gov/orwh serves as a focal point for women's health research conducted
under the auspices of NIH. Its web site contains information about the Women's
Health Initiative, research involving women, recruiting women as
investigators, and the “Strategic Plan to Address Health Disparities Among
Diverse Populations of Women.” The discussion of the lack of women as research
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participants is based on Office Of Minority Health, “Including Women and
Minorities in Clinical Trials,” Closing the Gap (December/January, 1998): 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 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 Heath 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 the Hmong Case Presentation, see “Girl Flees After Clash of Cultures
on Illness,” New York Times (12 November 1994); for follow-ups on the case of
Lor Lee, see Fresno Bee (2 November 1996; 2 February 1995). Information in the
Social Context dealing with health and status: WorkHealth.org, Michael Marmot,
”The Whitehall Study (summary),” (2006); Patricia Cohen, “Forget Lonely, Life
Is Healthy at the Top,” New York Times (15 May 2004); Matthew Herper,
Forbes.com (19 June 2003).
On the Social Context dealing with men's health and the backlash,
statistics cited on causes of disease and death rates are from Centers for
Disease Control; life expectancy figures are from National Vital Statistics
Report, vol. 53, Deaths: Final Data for 2002, p.5; data about clinical trials
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are cited from the “Fact Sheet” prepared by Men's Health America,
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 glennsacks.com.
Chapter 5: Genetic Control
The most recent information relevant to the Case Presentation on the
embryonic stem-cell debate is from the following New York Times articles: Gina
Kolata, “Embryonic Cells, No Embryo Needed,” (11 October 2005); Nicholas Wade,
“Harvard Scientists Report a Stem-Cell Advance” (23 August 2005), “Science
Academy Creating a Stem-Cell Panel” (16 February 2006), “Stem Cells May be Key
to Cancer” (21 February 2006); Sheryl Gay Stolberg, “G.O.P. Lawmakers Offer
Alternative Bill on Stem Cells” (12 July 2995), “Senate Leader Veers from Bush
Over Stem Cells” (29 July 2005),”Senate Leader Criticized and Praised for Stem
Cell Shift” (30 July 2005). 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),
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 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
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Repair” (22 January 1999). The President's Council on Bioethics report, Human
Cloning and Human Dignity: An Ethical Inquiry (July, 2002), is available at
bioethics.gov.
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): 16. On genetic testing, see Sandra Blakeslee, “Cause of
Brain Cells' Death in Seven Diseases Is Discovered,” New York Times(8 August
1997); Nicholas Wade, “Two Gene Discoveries Help Explain Misfires of Epilepsy
in the Brain,” New York Times (30 December 1997), “Newly Discovered Gene
Offers Clues on Deafness,” (14 November 1997), “Gene Mutation Tied to Colon
Cancers in Ashkenazi Jews” (26 August 1997), “Gene From a Mideast Ancestor May
Link 4 Disparate Peoples,” (22 August 1997) on familial 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). 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. On recent breast cancer conclusions, see Jeffry
Kluger, Time (26 May 1997). Poll results are from a 1994 Time/CNNA survey
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cited in Time (17 January 1994), p. 50.
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 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” [namely, severe-combined-immunodeficiency disease]
(9 April 1993) and Natalie Angier, “Gene Is Found That Causes Rare Type of
Hypertension” (16 January 1992). 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
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influence of genetic information on food production, see Andrew Pollack,
“Biotech's Sparse Harvest,” New York Times (14 February 2006).
The objections cited in Social Context: Genetic Testing: Too Much
Prevention? are from Amy Harmon, “The Problem With an Almost-Perfect Genetic
World,” New York Times (20 November 2005). 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). 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. On disease risk associated with genes in
the human genome, see in the New York Times Nicholas Wade, “Genetic Catalogue
May Aid Search for Roots of Disease” (27 October 2005) and “Gene Increases
Diabetes Risk” (16 January 2006).
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 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).
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
13
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 (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.
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). 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)
Chapter 6: Reproductive Control
The Case Presentation: Shopping for Mr. Goodsperm 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): 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).
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The most recent (as of 2007) survey of the status of AR is Robert W.
Rebar and Alan H. DeCherney, “Assisted Reproductive Technology in the United
States,” New England Journal of Medicine 350 (15 April 2004): 1603-1604.
Statistics about assisted reproduction are from Centers for Disease Control,
“1998 Assisted Reproduction Success Rates,” Reproductive Health Information
Source, cdc.gov/art98. 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); women desperate enough to spend almost
anything, Gina Kolata, “The Heart's Desire” (11 May 2004); women seeking lower
AR costs, Felcia R. Lee, “Fertility Tourists Go to Great Lengths to Conceive”
(25 January 2005); 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 a 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). The debate about selling ova is reported
by Gina Kolata in “Young Women Offer to Sell Their Eggs to Infertile Couples,”
15
New York Times (10 November 1991). 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 AP, “Surrogate Mother's
Child in English Court Custody” (9 January 1985).
The Case Presentation: Hello, Dolly 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,”
AP (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), 59-63; Madeline Nash, “The Age of Cloning,”
(10 March 1997); 64-65; 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,” Newsweek (8 November 1993): 60–64
and David Gelman, “How Will the Clone Feel,” same issue, (65-66). The cloning
story is told in Gina Kolata, Clone (N.Y.:1998) and in Ian Wilmut, Keith
Campbell, and Colin Tudge, The Second Creation: Dolly and the Age of
Biological Control (Cambridge, MA: Harvard University Press, 2000). Recent
success in cloning animals is discussed in Anne Eisenberg, “Hello Kitty, Hello
Clone,” New York Times, (28 May 2005); on safety, see, AP, “Milk and Meat of
Clones Seem Safe, Study Says” (11 April 2006).
The Louise Brown Case Presentation is based on Newsweek (7 August 1978);
16
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 Case Presentation: 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 Social Context: Postmenopausal Motherhood and the discussion in the
Briefing Session draw on “World's Oldest Mother Just Wanted Baby,” AP (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): 41; AP, “California Woman, 53, Gives Birth to Twins” (11
November 1992); and 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 in Baby-Making,” (19 August 1997); 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; AP, “Mom, 43, Having Baby to Save Daughter's Life”
17
(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): 100. 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).
Chapter 7: Scarce Resources
The heart-transplant Case Presentation is based on facts drawn from;
James Steingold, “Inmate's Transplant Prompts Questions of Costs and Ethics,”
New York Times (31 January 2002); Sixty Minutes, “Change of Heart,” CBS News
(14 September 2003); Ethics Committee of the United Network for Organ Sharing,
“Position Statement Regarding Convicted Criminals and Transplant Evaluation.”
unos.org/resources/bioethics (no date).
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 survival rates, see the United Network for Organ
Sharing website unos.org. On special topics see R. W. Evans et al., “The
Potential Supply of Organ Donors,” JAMA 259 (1992): 1546-1547; “P.A. Singer et
al., “Ethics of Liver Transplantation with Living Donors,” New England Journal
of Medicine 321 (1989): 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. 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. 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
18
169 (1970): 406-428. On defining death, see Stuart J. Youngner, Robert M.
Arnold, and Renie Schapiro, The Definition of Death: Contemporary
Controversies (Baltimore: Johns Hopkins University Press, 2001).
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,” AP (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 the Case Presentation dealing with the shortage
of Betaseron, see AP, “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).
Chapter 8: Paying For Health Care
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).
The Social Context: American Dream, American Nightmare uses information
from these New York Times articles: Robert W. Pear, “Health Spending at a
19
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). On
the Massachusetts plan described in the Case Presentation, see these New York
Times articles by Pam Belluck: “Massachusetts Sets Health Plan for Nearly All”
(5 April 2006), “The Nurturing of Health Care” (6 April 2006), and
“Massachusetts Legislation on Insurance Becomes Law” (13 April 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).
Information in the Canadian Case Presentation comes from Karen Dnelan,
et. al. “All Payer, Single Payer, Managed Care, No Payer: Patients'
Perspectives in Three Nations [U.S., Canada, Germany],” Health Affairs, 15
(1996): 256-265, and from the following New York Times articles: James Brooke,
“Full Hospitals Make Canadians Wait and Look South” (16 January 2000); Anthony
De Palma, “Doctor, What's the Prognosis for Canada” (15 December 1996); For
detailed comparison of the U.S. system with those of Canada and Germany, see
Donald Drake, Susan Fitzgerald, and Mark Jaffe, Hard Choices: Health Care At
What Cost? (Kansas City: Andrews and McMeel, 1993).
Chapter 9: Abortion
The Social Context about McCorvey (“Roe”) is from an interview by
Douglas S. Wood, “Who is Jane Roe?” CNN Interactive,
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 AP, “Small Amount of
20
Folic Acid Bars Defects” (4 December 1997). For specific developmental or
genetic anomalies, see Charles B.Clayman, ed. American Medical Association
Encyclopedia of Medicine (New York: Random House, 1989.)
Numbers in the Social Context: a Statistical Profile on Abortion are
from: Alan Guttmacher Institute, “Facts In Brief: Induced Abortion in the
United States,” 2005, 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 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 “Abortion Since Roe,” New York Times (6
November 2005).
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
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).
The conservative Catholic view is argued in Hanna Klaus, “The Case Against
Plan B,” Ethics and Medicine, 29 (March 2004): 3-4. 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).
21
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 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).
Chapter 10: Impaired Infants and Medical Futility
The Bente Hindriks Case Presentation uses information from Sure Turton,
“In the Baby's Last Seconds,” 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
22
Cry,” New York Times (19 March 2005); University Medical Center Gronigen,
“Pediatricians Call for Nationwide Protocol,” umcg.nl/asg/nl/english/nieuws
(10 December 2004). These also serve as the source for the background of the
Gronigen Protocol presented in the Lemuel Smith reading. The Protocol is
presented and explained in two articles by A.A.E. Verhagen and P.J.J. Saur:
“End-of-Life Decisions in Newborns: an Approach from the Netherlands,”
Pediatrics 116 (September 2005), 736-739 and “The Gronigen Protocol—Euthanasia
in Severely Ill Newborns,” New England Journal of Medicine, 352 (10 March
2005): 959-962.
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).
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
AP, “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 is based on a case presented in James M. Gustafson,
23
“Mongolism, Parental Desires, and the Right to Life,” Perspectives in Biology
and Medicine 16 (1973): 529–557. The R.S. Duff and A.G.M. Campbell article is
“Moral and Ethical Dilemmas in the Special-Care Nursery,” New England Journal
of Medicine 289 (1973): 75-78. The Social Context: The Baby Doe Cases is based
on George J. Annas, “Disconnecting the Baby Doe Hotline,” Hastings Center
Report 13 (June 1983): 14-16 and “Baby Doe Redux,” Hastings Center Report 13
(October 1983): 26-27; Bonnie Steinbock, “Baby Jane Doe in the Courts,”
Hastings Center Report 14 (February 1984): 13-19; Thomas H. Murray, “The Final
Anticlimactic Rule on Baby Doe,” Hastings Center Report 15 (June 1985): 5-9;
and Time (14 November 1983); 107.
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), pp. 149-150. The Irene Towers Scenario is
based on a Chicago case reported by the AP (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 AP (8 August 1985). The original policy endorsed by the Netherlands
Supreme Court was outlined in a New York Times story (27 November 1984).
Chapter 11: Euthanasia and Physician-Assisted Suicide
The timeline in the Terri Schiavo Case Presentation (as well as some
information) is from Daniel Eisenberg, “Lessons of the Schiavo Battle,” Time
24
(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),
“Comatose Woman's Case Heard by Florida Court” (1 September 2004). The autopsy
results are quoted in New York Times (19 June 2005), “The Hard Facts Behind a
Heartbreaking Case;” 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.
Survey results of American attitudes are from: CBS News, “Poll:
Physician-Assisted Suicide” (24 November 2004; 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; harrisinteractive.com).
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 Social Context on the Cruzan case draws from: Time (11 December
25
1989; 19 March 1990; 9 July 1990); Newsweek, Marcia Angell, “The Right to Die
in Dignity” (23 July 1990); New York Times (17 November 1988; 29 July 1988; 25
July 1989; 19 January 1990; 26, 27 June 1990; 23 July 1990). 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). 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). The Kevorkian Case Presentation draws on
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). The
Donald Herbert Case Presentation is based on information from Carolyn
Thompson, “Firefighter Who Woke From Ten-Year Coma Dies,” Chicago Sun-Times
(22 February 2006) and these New York Times articles: Robert McFadden, “After
Ten Years Ex-Firefighter Recovers Memory and Speech” (3 May 2006); James
Barron, “After Sudden Lucidity, Firefighter is Less Animated” (5 May 2006);
Benedict Carey, “New Signs of Awareness Seen in Some Brain-Injured Patients”
(8 February 2005).
The Social Context on physician-assisted suicide in the Netherlands uses
information from “No Rush to Die,” Economist (16 August 2003): 47. Background
information is from these New York Times articles: Tom Kuntz, “Helping a Man
Kill Himself as Shown on Dutch TV” (includes transcript of dialogue during the
process) (14 November 1994); Marliese Simons, “Dutch Move to Enact Law Making
Euthanasia Easier” and “Dutch Parliament Approves Law Permitting Euthanasia”
26
(9, 10 February 1993); and Maurice A. M. de Wachter, “Euthanasia in the
Netherlands,” Hastings Center Report (April 1992). The Timothy Quill Scenario
is based on “State Won't Press Case on Doctor in Suicide,” New York Times (17
August 1991).
Part V: Foundations of Bioethics: Ethical Theories, Moral Principles, and
Medical Decisions
My discussion of ethical theories is generally indebted to Richard B.
Brandt, Ethical Theory (Englewood Cliffs, N.J.: Prentice Hall, 1959) and
William K. Frankena, Ethics, 2nd ed. (Englewood Cliffs, N.J.: Prentice-Hall
1973).
My treatment of utilitarianism owes much to the excellent introductory
essay by Paul Taylor in his Problems of Moral Philosophy (Belmont, Calif.:
Dickenson, 1971), pp. 137–151. Mill's statement of the principle of utility is
from Utilitarianism (Indianapolis: Bobbs-Merrill, 1971), p. 18; the second
quotation is from p. 24. In the discussion of act and rule utilitarianism and
their attendant difficulties, I am indebted to Michael D. Bayles and Kenneth
Henley's introduction in their Right Conduct (New York: Random House, 1983),
pp. 86-94, and to Carl Wellman, Morals and Ethics (New York: Scott, Foresman,
1975), pp. 39-42, 47-50. The quotation is from p. 49.
The statements of Kant's categorical imperative are more paraphrases
than literal translations. They are from his Groundwork of the Metaphysics of
Morals, translated by H. J. Paton (New York: Harper & Row, 1964). Other
translations and editions are easily available. Some of the criticisms of Kant
are based on those of Brandt (Ethical Theory, pp. 27–35) and Frankena (Ethics,
pp. 30-33).
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
27
Cliffs, N. J.: Prentice-Hall, 1978), pp. 149-160.
Rawls's theory is presented in A Theory of Justice (Cambridge, Mass.:
Harvard University Press, 1971). The principles are quoted from p. 203;
“natural duties” are discussed on pp. 340–350. My statement of the theory is
indebted to Norman Daniels's introduction to Reading Rawls (New York: Basic
Books, 1976). The first criticism is one made by Thomas Nagel, “Rawls on
Justice” (Daniels, pp. 1-16) and Ronald Dworkin, “The Original Position”
(Daniels, pp. 16-53). The second criticism is urged by R. M. Hare, “Rawls's
Theory of Justice” (Daniels, pp. 81–108) and David Lyons, “Nature and
Soundness of the Contract and Coherence Arguments” (Daniels, pp. 141-169).
For Aquinas's view on “man,” see his Summa Theologica, Part II (First
Part), vol. 6, translated by Fathers of the English Dominican Province
(London: Burns Oates and Washbourne, 1914). For his views on natural law and
law in general, see vol. 8, “Treatise on Law.” For an interpretation of
Aquinas, see Frederick Copleston, A History of Philosophy, vol. 2, part 2 (New
York: Doubleday, 1962), pp. 126–131, to which my account is indebted. For the
presentation of the current Catholic natural law view I am indebted to Charles
J. McFadden, Medical Ethics, 6th ed. (Philadelphia: F. A. Davis, 1967). The
doctrine of double effect is treated on pp. 121–155; euthanasia, extraordinary
means, and medical experimentation, pp. 239–270. The quotations from the
Directives are from the appendix in McFadden: abortion, p. 441, euthanasia, p.
442.
My discussion of moral principles is indebted to Tom. L. Beauchamp and
James F. Childress, Principles of Biomedical Ethics (New York: Oxford
University Press, 1979), pp. 56–201, and to Beauchamp's and LeRoy Walters's
introduction in Contemporary Issues in Bioethics, 2d ed. (Belmont, Calif.:
Wadsworth, 1982), pp. 26–32. The discussion of liberty-limiting principles is
based on Joel Feinberg, Social Philosophy (Englewood Cliffs, N.J.: Prentice-
Hall, 1973), pp. 20–33, as is the discussion of principles of justice, pp. 98–
119.
The account of virtue ethics is indebted to Louis P. Pojman, Ethics:
28
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 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 (Bloomington: Indiana University Press, 1992).