Hostname: page-component-cd9895bd7-q99xh Total loading time: 0 Render date: 2024-12-26T08:24:16.516Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  01 January 2021

Ellen Wright Clayton
Get access Rights & Permissions [Opens in a new window]

Extract

Genetics offers real opportunities for public health actors. Increased understanding of genetics will illuminate some of the factors that affect disease and, in many cases, will lead to more effective treatments. The recognition that phenylketonuria was caused by a metabolic defect that led to the accumulation of toxic levels of phenylalanine, an elevation that could largely be averted by adopting a low-phenylalanine diet, is an early example. Some cases of what was thought to be Sudden Infant Death Syndrome, a diagnosis used when no etiology is known, now appear to have been caused by metabolic defects in fatty acid oxidation and sodium channel defects. One of the tasks that has already been undertaken by the public health sector is to ensure that genomic information is incorporated into clinical care when the robusmess of findings and their clinical utility have been well defined.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 30 , Issue 2 , Summer 2002 , pp. 290 - 297
Copyright
Copyright © American Society of Law, Medicine and Ethics 2002

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Boles, R.et al., “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.et al., “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.CrossRefGoogle Scholar
Ackerman, M.J.et al., “Postmortem Molecular Analysis of SCN5A Defects in Sudden Infant Death Syndrome,” JAMA, 286 (2001): 2264–69.CrossRefGoogle Scholar
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.Google Scholar
See, e.g., PEN Fluoridation Leadership Team, at <http://www.penweb.org/fluoride> (last visited April 15, 2002).+(last+visited+April+15,+2002).>Google Scholar
An example might be deciding to screen all blacks for HIV/AIDS on the grounds that some blacks are intravenous drug abusers.Google Scholar
An example might be a decision to screen homosexuals but not intravenous drug abusers for HIV/AIDS.Google Scholar
Andreasen, N.C., “The Amish: A Naturalistic Laboratory for Epidemiologic and Genetic Research,” American Journal of Psychiatry, 140, no. 1 (1983): 75–6.Google Scholar
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.CrossRefGoogle Scholar
E.g., Ky. Rev. Stat. Ann. $ 214.155 (Michie 2000).Google Scholar
E.g., Fla. Stat. Ann. $ 232.032 (2001); Ind. Code $ 20-12-71-14 (2001).Google Scholar
Wisconsin v. Yoder, 406 U.S. 205 (1972).Google Scholar
Kevles, D.J., In the Name of Eugenics (New York: A.A. Knopf, 1985).Google Scholar
Glass, J.M., Life Unworthy of Life: Racial Phobia and Mass Murder in Hitler's Germany (New York: Basic Books, 1997).Google Scholar
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.Google Scholar
Loving v. Virginia, 388 U.S. 1 (1967).Google Scholar
>Skinner v. Oklahoma, 316 U.S. 535 (1942).Skinner+v.+Oklahoma,+316+U.S.+535+(1942).>Google Scholar
Pierce, W.L., “Equality: Man's Most Dangerous Myth,” at <http://www.stormfront.org/racediff/equality.html> (last visited April 6, 2002). (last visited April 6, 2002).' href=https://scholar.google.com/scholar?q=Pierce,+W.L.,+“Equality:+Man's+Most+Dangerous+Myth,”+at++(last+visited+April+6,+2002).>Google Scholar
“Watson's ‘Sun and Sex’ Lecture Upsets Audience,” Nature Medicine, 7 (Feb. 2001): 137.Google Scholar
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).+(quoting+Craig+Venter).>Google Scholar
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.Google Scholar
Shriver, M.D.et al., “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.Google Scholar
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.Google Scholar
Healthy People 2010, conference ed., 2 vols. (Washington, D.C.: U.S. Department of Health and Human Services, 2000).Google Scholar
Cooper-Patrick, L.et al., “Race, Gender and Partnership in the Patient-Physician Relationship,” JAMA, 282, no. 6 (1999): 583–89; Kaplan, S.H.et al., “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.CrossRefGoogle Scholar
Katz, J., The Silent World of Doctor and Patient (New York: Free Press, 1984).Google Scholar
Wilson, J.F.et al., “Population Genetic Structure of Variable Drug Response,” Nature Genetics, 29 (2001): 265–89.CrossRefGoogle Scholar
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).Google Scholar
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).Google Scholar
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>..>Google Scholar
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.Google Scholar
See, e.g., Ark. Stat. Ann. $ 20-15-302 (2000).CrossRefGoogle Scholar
Tsevat, J.et al., “Neonatal Screening for Sickle Cell Disease: A Cost-Effectiveness Analysis,” Journal of Pediatrics, 118 (1991): 546–54.CrossRefGoogle Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
See generally Reilly, R.R., Genetics, Law, and Social Policy (Cambridge: Harvard University Press, 1977).CrossRefGoogle Scholar
Struewing, J.P.et al., “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.CrossRefGoogle Scholar
Stolberg, S.G., “Jewish Concern Grows as Scientists Deepen Studies of Ashkenazi Genes,” New York Times, April 22, 1998.Google Scholar
“Jewish Leadership Meeting on Genetics,” The American Scene (Fall/Winter 1998), available at <http://www.hadassah.org/news/pubfrm3.htm>..>Google Scholar
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).+(last+visited+April+15,+2002).>Google Scholar
Tesh, S., Hidden Arguments: Political Ideology and Disease Prevention Policy (New Brunswick, New Jersey: Rutgers University Press, 1988).Google Scholar
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>..>Google Scholar
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.Google Scholar
45 C.F.R. §§ 46.111(1)–(2) (2001).Google Scholar
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>.;+National+Action+Plan+on+Breast+Cancer,+Consent+Form+for+Use+of+Tissue+for+Research,+at+.>Google Scholar
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.et al., “The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research,” American Journal of Human Genetics, 64 (1999): 1719–27.CrossRefGoogle Scholar
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>..>Google Scholar
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>.;+Joint+Statement+of+the+Icelandic+Medical+Association+and+deCODE+Genetics+on+the+Health+Sector+Database+(August+27,+2001),+available+at+.>Google Scholar
Guideline 4, supra note 46.Google Scholar