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Genetic Services, Economics, and Eugenics

Published online by Cambridge University Press:  26 September 2008

Diane B. Paul
Diane B. Paul
Affiliation:
Department of Political ScienceUniversity of Massachusetts at Boston
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Abstract

What are the aims of genetic services? Do any of these aims deserve to be labeled “eugenics”? Answers to these strenuously debated questions depend not just on the facts about genetic testing and screening but also on what is understood by “eugenics,” a term with multiple and contested meanings. This paper explores the impact of efforts to label genetic services “eugenics” and argues that attempts to protect against the charge have seriously distorted discussion about their purpose(s). Following Ruth Chadwick, I argue that the existence of genetic services presupposes that genetic disease is undesirable and that means should be offered to reduce it. I further argue that the economic cost of such disease is one reason why governments and health care providers deem such services worthwhile. The important question is not whether such cost considerations constitute “eugenics,” but whether they foster practices that are undesirable and, if so, what to do about them. The wielding of the term “eugenics” as a weapon in a war over the expansion of genetic services, conjoined with efforts to dissociate such services from the abortion controversy, has produced a rhetoric about the aims of these services that is increasingly divorced from reality. Candor about these aims is a sine qua non of any useful debate over the legitimacy of the methods used to advance them.

Type
Genetic Services Eugenic Practices?
Information
Science in Context , Volume 11 , Issue 3-4 , Autumn-Winter 1998 , pp. 481 - 491
Copyright
Copyright © Cambridge University Press 1998

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References

Andrews, L. B., Fullarton, J. E., Holtzman, N. A., and Motulsky, A. G., eds. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, D.C.: National Academy Press.Google Scholar
Annas, G. J. 1989. “Who's Afraid of the Human Genome?” Hastings Center Report (July/ August), 19–21.CrossRefGoogle ScholarPubMed
Andreano, R. L. and McCollum, D. W.. 1983. “A Benefit-Cost Analysis of Amniocentesis.” Social Biology 30:347–373.Google ScholarPubMed
Bishop, J. E. and Waldholz, M.. 1990. Genome. New York: Simon and Schuster.Google Scholar
Boone, C. K., 1988. “Bad Axioms in Genetic Engineering.” Hastings Center Report (August/September), 9–13.CrossRefGoogle ScholarPubMed
Caplan, A. C., 1993. “Neutrality Is Not Morality: The Ethics of Genetic Counseling.” In Prescribing the Future: Ethical Challenges in Genetic Counseling, edited by Bartels, D. M.,LeRoy, B. S., and Caplan, A. C., 149–165. New York: Aldine de Gruyter.Google Scholar
Chadwick, R. F. 1993. “What Counts as Success in Genetic Counselling?” Journal of Medical Ethics 19:43–46.CrossRefGoogle ScholarPubMed
Clarke, A. 1990. “Genetics, Ethics, and Audit.” Lancet 335:1145–1147.CrossRefGoogle ScholarPubMed
Conley, R. W. 1985. “Down Syndrome: Economic Burdens and Benefits of Prevention.” In Aneuploidy: Etiology and Mechanisms, edited by Dellarco, V. L., et al. , 35–59. New York: Plenum.CrossRefGoogle Scholar
Conley, R. and Milunsky, A.. 1975. “The Economics of Prenatal Genetic Diagnosis.” In Prevention of Genetic Disease and Mental Retardation, edited by Milunsky, A., 442–455. Philadelphia: W. B. Saunders.Google Scholar
Cowan, R. S. 1992. “Genetic Technology and Reproductive Choice: An Ethics for Autonomy.” In The Code of Codes: Scientific and Social issues in the Human Genome Project, edited by Kevles, D. J. and Hood, L., 245–263. Cambridge: Harvard University Press.Google Scholar
Crandall, B. F.,Lebhertz, T. B., and Tabsh, K.. 1986. “Maternal Age and Amniocentesis: Should this Be Lowered to 30 Years?” Prenatal Diagnosis 6:237–242.CrossRefGoogle ScholarPubMed
Duster, T. 1990. Backdoor to Eugenics. London: Routledge.Google Scholar
Edel, C. K. and Edel, M.. 1985. “Economic Costs of Aneuploidy: Some Problems of Measurement and Conceptualization.” In Aneuploidy: Etiology and Mechanisms, edited by Dellarco, V. L., Voytek, P. E., and Hollaender, A., 61–73. New York: Plenum.CrossRefGoogle Scholar
Falk, R. 1998. “Eugenics Denied.” New York Review of Books. (Jan. 15) 35:61.Google Scholar
Goldstein, H. and Philip, J.. 1990. “A Cost-Benefit Analysis of Prenatal Diagnosis by Amniocentesis in Denmark.” Clinical Genetics 37:241–263.CrossRefGoogle ScholarPubMed
Green, R. M. 1997. “Parental Autonomy and the Obligation not to Harm One's Child Genetically.” Journal of Law, Medicine & Ethics 25:5–15.CrossRefGoogle Scholar
Haddow, J. E., Palomaki, G. E., Knight, G. J., Cunningham, G. C., Lustig, L. S., and Boyd, P. A.. 1994. “Reducing the Need for Amniocentesis in Women 35 Years of Age or Older with Serum Markers for Screening.” New England Journal of Medicine (April 21) 330:1114–1118.CrossRefGoogle ScholarPubMed
Haggard, S. and Carter, F. A.. 1976. “Preventing the Birth of Infants with Down's Syndrome: A Cost-Benefit Analysis.” British Medical Journal (27 March), 753–756.CrossRefGoogle Scholar
Harris, J. 1992. Wonderwoman and Superman: The Ethics of Human Biotechnology. New York: Oxford University Press.Google Scholar
Healthy Children 2000: National Health Promotion and Disease Prevention Objectives Related to Mothers, Infants, Children, Adolescents, and Youth. 1991. Rockville, MD: U.S. Dept. of Health and Human Services, Public Health Service, Maternal and Child Health Bureau.Google Scholar
Heyd, David. 1992. Genethics: Moral Issues in the Creation of People. Berkeley: University of California Press.CrossRefGoogle Scholar
Hook, E. B. 1979. “Genetic Counseling and Prenatal Genetic Services: Cost-Benefit Considerations and Policy Implications.” In Service and Education in Medical Genetics, edited by Porter, I. H. and Hook, E. B., 29–54. New York: Academic Press.Google Scholar
Hubbard, R. and Wald, E.. 1993. Exploding the Gene Myth. Boston: Beacon Press.Google Scholar
Johnson, M. 1990. “Defective Fetuses and Us.” Disability Rag (March/ April), 34.Google Scholar
Karjala, D. 1992. “A Legal Research Agenda for the Human Genome Initiative.” Jurimetrics 32:121–222.Google ScholarPubMed
Kitcher, P. 1996. The Lives to Come: The Genetic Revolution and Human Possibilities. New York: Simon and Schuster.Google Scholar
Lippman, A. 1992. “Mother Matters: A Fresh Look at Prenatal Genetic Testing.” Issues in Reproductive and Genetic Engineering 5:141–154.Google Scholar
Maddox, J. 1994. “Adventures in the germ line.” New York Times (Sunday, December 11), Section IV, 15.Google ScholarPubMed
Marfatia, L., Punales-Morejon, D., and Rapp, R.. 1990. “Counseling the Under-served: When an Old Reproductive Technology Becomes a New Reproductive Technology.” Birth Defects: Original Article Series 26:109–136.Google Scholar
Morris, D. T. 1994. “Cost Containment and Reproductive Autonomy: Prenatal Genetic Screening and the American Health Security Act of 1993.” American Journal of Law and Medicine 20:295–316.CrossRefGoogle ScholarPubMed
Morton, O. 1998. “Overcoming Yuk.” Wired (Jan.), 44–48.Google Scholar
Motulsky, A. G. 1980. “Governmental Responsibilities in Genetic Diseases.” In Genetics and the Law II, edited by Milunsky, A. and Annas, G. J., 237–244. New York: Plenum Press.CrossRefGoogle Scholar
Neel, J. V. 1994. Physician to the Gene Pool. New York: Wiley.Google Scholar
OTA (Office of Technology Assessment), U. S. Congress. 1988. Mapping our Genes-Genome Projects: How Big, How Fast? OTA-BA-373. Washington, D.C.: USGPO.Google Scholar
OTA (Office of Technology Assessment), U.S. Congress. 1992. Cystic Fibrosis and DNA Tests: Implications of Carrier Screening. OTA-BA-532. Washington, D.C.: USGPO.Google Scholar
Parfit, D. 1976. “On Doing the Best for our Children.” In Ethics and Population, edited by Bayles, M D.. Cambridge, MA: Schenkman.Google Scholar
Parfit, D. 1984. Reasons and Persons. Oxford: Oxford University Press.Google Scholar
Paul, D. B. 1992. “Eugenic Anxieties, Social Realities, and Political Choices.” Social Research 59:663–683.Google Scholar
Paul, D. B. 1995. Controlling Human Heredity: 1865 to the Present. Amherst, NY: Prometheus Books.Google Scholar
Paul, D. B. 1997. “From Eugenics to Medical Genetics.” Journal of Policy History 9:96–116.CrossRefGoogle Scholar
Pfaff, W. 1997. “Eugenics, Anyone?” New York Review of Books (Oct. 23) 34:23–24.Google Scholar
Robertson, J. A. 1996. “Genetic Selection of Offspring of Characteristics.” Boston University Law Review 76:421–482.Google ScholarPubMed
Sadovnick, A. D. and Baird, P. A.. 1981. “A Cost-Benefit Analysis of Prenatal Detection of Down Syndrome and Neural Tube Defects in Older Mothers” American Journal of Medical Genetics 10:367–378.CrossRefGoogle ScholarPubMed
Shackley, P. 1996. “Economic Evaluation of Prenatal Diagnosis: A Methodological Review,” Prenatal Diagnosis 16:389–95.3.0.CO;2-U>CrossRefGoogle ScholarPubMed
van der Riet, A. P. M., van Hout, B. A., and Rutten, F. F. H. 1997. “Cost-Effectiveness of DNA Diagnosis for Four Monogenic Diseases.” Journal of Medical Genetics 34:741–745.CrossRefGoogle ScholarPubMed
Waitzman, N. J., Romano, P. S., and Scheffler, R. M.. 1994. “Estimates of the Economic Costs of Birth Defects.” Inquiry 31:188–205.Google ScholarPubMed
Wertz, D. C. 1997. “Society and the Not-so-New Genetics: What are We Afraid of? Some Future Predictions from a Social Scientist.” Journal of Contemporary Health Law and Policy 13:299–346.Google ScholarPubMed
Wikler, D., forthcoming. In In the Shadow of Eugenics (tentative title), edited by Buchanan, A. E., Brock, D., Daniels, N., and Wikler, D..Google Scholar