The Complex Relationship of Genetics,Groups,and Health: What it Means for Public Health

Boles R. , “Retrospective Biochemical Screening of Fatty Acid Oxidation Disorders in Postmortem Livers of 418 Cases of Sudden Death in the First Year of Life,” Journal of Pediatrics, 132 (1998): 924–33.

But see Wang S. , “Is the G985A Allelic Variant of Medium-Chain Acyl-CoA Dehydrogenase a Risk Factor for Sudden Infant Death Syndrome? A Pooled Analysis,” Pediatrics, 105, no. 5 (2000): 1175–76.

Ackerman M.J. , “Postmortem Molecular Analysis of SCN5A Defects in Sudden Infant Death Syndrome,” JAMA, 286 (2001): 2264–69.

The Institute of Medicine's Committee for the Study of the Future of Public Health concluded that the core missions of public health are “assessment, policy development, and assurance.” Committee for the Study of the Future of Public Health, Institute of Medicine, The Future of Public Health (Washington, D.C.: National Academy Press, 1988): At 7.

See, e.g., PEN Fluoridation Leadership Team, at <http://www.penweb.org/fluoride> (last visited April 15, 2002).

An example might be deciding to screen all blacks for HIV/AIDS on the grounds that some blacks are intravenous drug abusers.

An example might be a decision to screen homosexuals but not intravenous drug abusers for HIV/AIDS.

Andreasen N.C. , “The Amish: A Naturalistic Laboratory for Epidemiologic and Genetic Research,” American Journal of Psychiatry, 140, no. 1 (1983): 75–6.

But see Byers B. Crider B.W. Biggers G.K. , “Bias Crime Motivation: A Study of Hate Crime and Offender Neutralization Techniques Used Against the Amish,” Journal of Contemporary Criminal Justice, 15, no. 1 (1999): 78–96.

E.g., Ky. Rev. Stat. Ann. $ 214.155 (Michie 2000).

E.g., Fla. Stat. Ann. $ 232.032 (2001);

Ind. Code $ 20-12-71-14 (2001).

Wisconsin v. Yoder, 406 U.S. 205 (1972).

Kevles D.J. , In the Name of Eugenics (New York: A.A. Knopf, 1985).

Glass J.M. , Life Unworthy of Life: Racial Phobia and Mass Murder in Hitler's Germany (New York: Basic Books, 1997).

Lombardo P.A. , “Medicine, Eugenics, and the Supreme Court: From Coercive Sterilization to Reproductive Freedom,” Journal of Contemporary Health Law and Policy, 13 (1996): 1–25.

Loving v. Virginia, 388 U.S. 1 (1967).

Skinner v. Oklahoma, 316 U.S. 535 (1942).

Pierce W.L. , “Equality: Man's Most Dangerous Myth,” at <http://www.stormfront.org/racediff/equality.html> (last visited April 6, 2002).

“Watson's ‘Sun and Sex’ Lecture Upsets Audience,” Nature Medicine, 7 (Feb. 2001): 137.

Annas G.J. , “Genism, Racism, and the Prospect of Genetic Genocide.” Paper presented at The New Aspects of Racism in the Age of Globalization and the Gene Revolution, UNESCO 21st Century Talks, World Conference against Racism, Racial Discrimination, Xenophobia and Related Intolerance, Durban, South Africa, September 3, 2001, available at <http://www.bumc.bu.edu/www/sph/lw/pvl/genism.htm> (quoting Craig Venter).

Omi M.A. , “The Changing Meaning of Race,” in Smelser N.J. Wilson W.J. Mitchell F. , eds., America Becoming: Racial Trends and Their Consequences, vol. 1 (Washington, D.C.: National Academy Press, 2001): 243–63.

Shriver M.D. , “Ethnic-Affiliation Estimation by Use of Population-Specific DNA Markers,” American Journal of Human Genetics, 60, no. 4 (1997): 957–64;.

Smouse P.E. Chevillon C. , “Analytical Aspects of Population-Specific DNA Fingerprinting for Individuals,” Journal of Heredity, 89, no. 2 (1998): 143–50.

Lee S.S. Mountain J. Koenig B.A. , “The Meanings of ‘Race’ in the New Genomics: Implications for Health Disparities Research,” Yale Journal of Health Policy, Law, and Ethics, 1 (2001): 33–75.

Healthy People 2010, conference ed., 2 vols. (Washington, D.C.: U.S. Department of Health and Human Services, 2000).

Cooper-Patrick L. , “Race, Gender and Partnership in the Patient-Physician Relationship,” JAMA, 282, no. 6 (1999): 583–89;.

Kaplan S.H. , “Patient and Visit Characteristics Related to Physicians' Participatory Decision-Making Style. Results from the Medical Outcomes Study,” Medical Care, 33, no. 12 (1995): 1176–87.

Katz J. , The Silent World of Doctor and Patient (New York: Free Press, 1984).

Wilson J.F. , “Population Genetic Structure of Variable Drug Response,” Nature Genetics, 29 (2001): 265–89.

Brewster L. Kleijnen J. Van Montfrans G. , “Pharmacotherapy for Hypertension in People of Sub-Saharan Africa or of Sub-Saharan African Descent.” Protocol of the Cochrane Hypertension Group, Cochrane Database of Systematic Reviews, Issue 3, 2001 (citing earlier studies).

American College of Obstetricians and Gynecologists, American College of Medical Genetics, Preconception and Prenatal Carrier Screening for Cystic Fibrosis: Clinical and Laboratory Guidelines (Washington, D.C.: American College of Obstetricians and Gynecologists, 2001).

Consensus Development Panel, “Genetic Testing for Cystic Fibrosis,” National Institutes of Health Consensus Development Conference Statement, 15, no. 4 (April 14–16, 1997): At 10, available at <http://odp.od.nih.gov/consensus/cons/106/106_statement.htm>.

Press N.A. Browner C.H. , “‘Collective Fictions’: Similarities in Reasons for Accepting Maternal Serum Alpha-Fetoprotein Screening Among Women of Diverse Ethnic and Social Class Backgrounds,” Fetal Diagnostic Therapy, 8, suppl. 1 (1993): 97–106.

See, e.g., Ark. Stat. Ann. $ 20-15-302 (2000).

Tsevat J. , “Neonatal Screening for Sickle Cell Disease: A Cost-Effectiveness Analysis,” Journal of Pediatrics, 118 (1991): 546–54.

Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health and Human Services, Sickle Cell Disease: Screening, Diagnosis, Management, and Counseling in Newborns and Infants (Rockville, Maryland: U.S. Department of Health and Human Services, 1993);

La. Rev. Stat. $ 40:1229.1 (2001), amended by Acts 1999, No. 328, $ 1.

Teach S.J. Lillis K.A. Grossi M. , “Compliance with Penicillin Prophylaxis in Patients with Sickle Cell Disease,” Archives of Pediatrics and Adolescent Medicine, 152, no. 3 (1998): 274–78.

See generally Reilly R.R. , Genetics, Law, and Social Policy (Cambridge: Harvard University Press, 1977).

Struewing J.P. , “The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA2 Among Ashkenazi Jews,” N. Engl. J. Med., 336, no. 20 (1997): 1401–08;.

Prior T.W. , “The I1307K Polymorphism of the APC Gene in Colorectal Cancer,” Gastroenterology, 116, no. 1 (1999): 58–63.

Stolberg S.G. , “Jewish Concern Grows as Scientists Deepen Studies of Ashkenazi Genes,” New York Times, April 22, 1998.

“Jewish Leadership Meeting on Genetics,” The American Scene (Fall/Winter 1998), available at <http://www.hadassah.org/news/pubfrm3.htm>.

Harry D. , Coordinator, Indigenous Peoples Coalition Against Biopiracy, “Tribes Meet to Discuss Genetic Colonization,” at <http://www.ipcb.org/calendar/conf_rpt.html> (last visited April 15, 2002).

Tesh S. , Hidden Arguments: Political Ideology and Disease Prevention Policy (New Brunswick, New Jersey: Rutgers University Press, 1988).

Action Group on Erosion, Technology and Concentration, “Colombian Indigenous People Negotiate to get Human Tissue Samples Back” (March 18, 1997), at <http://www.rafi.org/article.asp?newsid=80>.

Clayton E.W. , “Creating a Process to Collect Human Biological Materials and Medical Records for Research from Patients in Teaching Hospitals.” Abstract from presentation at A Decade of ELSI Research: A Celebration of the First Ten Years of the Ethical, Legal, and Social Implications (ELSI) Programs,

printed in Journal of Law, Medicine & Ethics, 29, no. 2, supplement (2001): at 5.

45 C.F.R. §§ 46.111(1)–(2) (2001).

The National Action Plan on Breast Cancer in the United States was one of the pioneers in developing and pilot-testing mechanisms to provide patients with these choices. See National Action Plan on Breast Cancer, National Biological Resource Banks Working Group, Sunset Report (July 1998), available at <http://www.4woman.gov/napbc/catalog.wci/napbc/sunset2.htm>;

National Action Plan on Breast Cancer, Consent Form for Use of Tissue for Research, at <http://www.4woman.gov/napbc/napbc/consent.htm>.

Sharp R.R. Foster M.W. , “Involving Study Populations in the Review of Genetic Research,” Journal of Law, Medicine & Ethics, 28, no. 1 (2000): 41–51;.

Weijer C. Emanuel E.J. , “Protecting Communities in Biomedical Research,” Science, 289 (2000): 1142–44;.

Foster M.W. Eisenbraun A.J. Carter T.H. , “Communal Discourse as a Supplement to Informed Consent for Genetic Research,” Nature Genetics, 17, no. 3 (1997): 277–79;.

Foster M.W. Bernsten D. Carter T.H. , “A Model Agreement for Genetic Research in Socially Identifiable Populations,” American Journal of Human Genetics, 63 (1998): 696–702;.

Foster M.W. , “The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research,” American Journal of Human Genetics, 64 (1999): 1719–27.

Council for International Organizations of Medical Sciences (CIOMS), “Cultural Considerations,” Guideline 4, International Ethical Guidelines for Biomedical Research Involving Human Subjects, rev. ed. (January 2002), available at <http://www.cioms.ch/guidelines_january_2002.htm>.

Act on a Health Sector Database no. 139/1998, passed by the Icelandic Parliament at 123rd session, 1998–99, available at <http://brunnur.stjr.is/interpro/htr/htr.nsf/pages/forsid-ensk>;

Joint Statement of the Icelandic Medical Association and deCODE Genetics on the Health Sector Database (August 27, 2001), available at <http://www.decodegenetics.com/news/releases/older/item.ehtm?id=17881>.

Guideline 4, supra note 46.