1

[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

2

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.

3

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

4

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.

5

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,

6

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-

7

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

8

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

9

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

10

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

11

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

12

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).

14

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).