No CrossRef data available.
Article contents
Eugenics and Genetic Testing
Published online by Cambridge University Press: 26 September 2008
Abstract
Pressures to lower health-care costs remain an important stimulus to eugenic approaches. Prenatal diagnosis followed by abortion of affected fetuses has replaced sterilization as the major eugenic technique. Voluntary acceptance has replaced coercion, but subtle pressures undermine personal autonomy. The failure of the old eugenics to accurately predict who will have affected offspring virtually disappears when prenatal diagnosis is used to predict Mendelian disorders. However, when prenatal diagnosis is used to detect inherited susceptibilities to adult-onset, common, complex disorders, considerable uncertainty is inherent in the prediction. Intolerance and the resurgence of genetic determinism are current pressures for a eugenic approach. The increasing use of carrier screening (to identify those at risk of having affected offspring) and of prenatal diagnosis could itself generate intolerance for those who refuse the procedures. Genetic determinism deflects society from social action that would reduce the burden of disease far more than even the maximum use of eugenics.
Information
- Type
- Genetic Services Eugenic Practices?
- Information
- Copyright
- Copyright © Cambridge University Press 1998
References
Adams, S., Wiggins, S., Whyte, P., Bloch, M., Shokeir, M. H., Soltan, H., Meschino, W., Summers, A., Suchowersky, O., Welch, J. P., Huggins, M, Theilman, J., and Hayden, M. R.. 1993. “Five Year Study of Prenatal Testing for Huntington's Disease: Demand, Attitudes, and Psychological Assessment.” Journal of Medical Genetics 30:549–556.CrossRefGoogle Scholar
Allen, G. E. 1994. “The Genetic Fix: The Social Origins of Genetic Determinism.” In Challenging Racism and Sexism: Alternatives to Genetic Explanations, edited by Tobach, E., and Rosoff, B., 163–187. New York: Feminist Press.Google Scholar
Angastiniotis, M. A. and Hadjiminas, M. G.. 1981. “Prevention of Thalassaemia in Cyprus.” Lancet 1 (8216, 14 February):369–370.CrossRefGoogle ScholarPubMed
Angastiniotis, M. A., Kyriakidou, S., and Hadjiminas, M. G.. 1986. “How Thalassemia Was Controlled in Cyprus.” World Health Forum 7:291–297.Google Scholar
Arnheim, N. and Erlich, H. A.. 1988. “Commercial Uses of Recombinant DNA Technology in Human Genetic Disease.” In Molecular Genetics in Medicine, edited by Childs, B., Holtzman, N. A., Kazazian, H. H., and Valle, D., 195–219. New York: Elsevier.Google Scholar
Baird, P. A., Anderson, T. W., Newcombe, H. B., and Lowry, R. B.. 1988. “Genetic Disorders in Children and Young Adults: A Population Study.” American Journal of Human Genetics 42:677–693.Google Scholar
Brunner, H. G., Nelen, M. R., van Zandvort, P., Abeling, N. G. G. M., van Gennip, A. H., Wolters, E. C., Kuiper, M. A., Ropers, H. H., and van Oost, B. A.. 1993. “X-linked Borderline Mental Retardation with Prominent Behavioral Disturbance: Phenotype, Genetic Localization; and Evidence for Disturbed Monoamine Metabolism.” American Journal of Human Genetics 52:1032–1039.Google Scholar
Burke, B. M. and Kolker, A., 1994. “Directiveness in Prenatal Genetic Counseling.” Women and Health 22:31–53.CrossRefGoogle ScholarPubMed
Chang, J. C. and Kan, Y. W., 1982. “A Sensitive New Prenatal Test for Sickle-Cell Anemia.” New England Journal of Medicine 707:30–32.CrossRefGoogle Scholar
Cao, A., 1994. “1993 William Allan Award Address.” American Journal of Human Genetics 54:397–402.Google Scholar
Cao, A., Furbetta, M., Galanello, R., Melis, M., Angius, A., Ximenes, A., Rosatelli, C., Ruggeri, R., Addis, M., Tuveri, T., Falchi, A. M., and Paglietti, E.. 1981. “Prevention of Homozygous B-Thalassemia by Carrier Screening and Prenatal Diagnosis in Sardinia.” American Journal of Human Genetics 33:592–605.Google Scholar
Chee, M., Yang, R., Hubbell, E., Berno, A, Huang, X. C., Stern, D., Winkler, J., Lockhart, D. J., Morris, M. S., and Fodor, S. P. A.. 1996. “Accessing Genetic Information with High-Density DNA Arrays.” Science 274:610–614.CrossRefGoogle ScholarPubMed
Cho, M. K., Arruda, M., and Holtzman, N. A.. 1997a. “Educational Material about Genetic Testing: Does It Provide Key Information for Patients and Practitioners?” American Journal of Medical Genetics 73:314–320.Google Scholar
Cho, M. K., Arruda, M., and Holtzman, N. A.. 1997b. “Informational Materials about Genetic Tests.” In Task Force on Genetic Testing: Promoting Safe and Effective Genetic Testing in the United States, edited Holtzman, N. A., and Watson, M. S., 125–135. Baltimore: Johns Hopkins University Press.Google Scholar
Clarke, A. 1991. “Is Non-Directive Genetic Counselling Possible?” Lancet 338:998–1001.Google Scholar
Cystic Fibrosis Genotype-Phenotype Consortium. 1993. “Correlation between Genotype and Phenotype in Patients with Cystic Fibrosis.” New England Journal of Medicine, 4:1308–1313.Google Scholar
DiMichele, D. 1996. “Hemophilia 1996. New Approach to an Old Disease.” Pediatric Clinics of North America 43 (3-4): 709–736.Google Scholar
Ebstein, R. P., Segman, R., Benjamin, J., Osher, Y., Nemanov, L., and Belmaker, R. H.. 1997. “5-HT2C (HTR2C) Serotonin Receptor Gene Polymorphism Associated with the Human Personality Trait of Reward Dependence: Interaction with Dopamine D4 Receptor (D4DR) and Dopamine D3 Receptor (D3DR) Polymorphism.” American Journal of Medical Genetics 74:65–72.Google Scholar
Embury, S., Scharf, S. J., Saiki, R. K., Gholson, M. A., Golbus, M. G., Arnheim, N., and Erlich, H. A.. 1987. “Rapid Prenatal Diagnosis of Sickle Cell Anemia by a New Method of DNA Analysis.” New England Journal of Medicine 316:656–660.Google Scholar
Epstein, C., Childs, B., Fraser, F. C., McKusick, V. A., Miller, J. R., Motulsky, A. G., Rivas, M., Thompson, M. W., Shaw, M. W., and Sly, W. S.. 1975. “Genetic Counseling (Statement of the American Society of Human Genetics Ad Hoc Committee on Genetic Counseling).” American Journal of Human Genetics 27:240–242.Google Scholar
Eskes, T. K. 1997. “Folates and the Fetus.” European Journal of Obstetrics, Gynecology, and Reproductive Biology 71:105–111.Google Scholar
Faden, R. R., Chwalow, J. A., Orel-Crosby, E., Holtzman, N. A., Chase, G. A., and Leonard, C. O.. 1985. “What Participants Understand about a Maternal Serum Alpha-Fetoprotein Screening Program.” American Journal of Public Health 75:1381–1384.Google Scholar
Fraser, F. C. 1974. “Genetic Counseling.” American Journal of Human Genetics 26:636–661.Google ScholarPubMed
Gaston, M. H., Verter, J. L., Woods, G., Pegalow, C., Kelleher, J., Presbury, G., Zarkowsky, H., Vichinsky, E., Iyer, R., and Lobel, J. S.. 1986. “Prophylaxis with Oral Penicillin in Children with Sickle Cell Anemia: A Randomized Trial.” New England Journal of Medicine 314:1593–1599.Google Scholar
Geller, G. and Holtzman, N. A.. 1995. “A Qualitative Assessment of Primary Care Physicians' Perceptions about the Ethical and Social Implications of Offering Genetic Testing.” Qualitative Health Research 5:97–116.CrossRefGoogle Scholar
Gilbert, W. 1992. “A Vision of the Grail.” In The Code of Codes: Scientific and Social Issues in the Human Genome Project, edited by Kevles, D. J., and Hood, L., 83–97. Cambridge: Harvard University Press.Google Scholar
Hall, J. G., Powers, E. K., Mcllvanie, R. T., and Ean, V. H.. 1978. “The Frequency and Financial Burden of Genetic Disease in a Pediatric Hospital.” American Journal of Medical Genetics 1:417–435.Google Scholar
Hamer, D. H., Hu, S., Magnuson, V. L., Hu, N., and Pattatucci, A. M. L.. 1993. “A Linkage between DNA Markers on the X Chromosome and Male Sexual Orientation.” Science 261:321–327.CrossRefGoogle ScholarPubMed
Hartley, N. E., Scotcher, D., Harris, H., Williamson, P., Wallace, A., Craufurd, D., and Harris, R.. 1997. ”The Uptake and Acceptability to Patients of Cystic Fibrosis Carrier Testing Offered in Pregnancy by the GP.” Journal of Medical Genetics 34:459–464.Google Scholar
Hobbins, J. C., Venus, I., and Mahoney, M. J.. 1981. “Ultrasonography and Fetoscopy in the Prenatal Detection of Hereditary Disorders.” In Genetic Issues in Pediatric and Obstetric Practice, edited by Kaback, M. M, 517–524. Chicago: Year Book Medical Publishers.Google Scholar
Hofman, K. J., Tambor, E. S., Chase, G. A., Geller, G., Faden, R. R., and Holtzman, N. A.. 1993. “Physicians' Knowledge of Genetics and Genetic Tests.” Academic Medicine 68:625–631.Google Scholar
Holmes-Siedle, M. N., Rynanen, M., and Lindenbaum, R. H.. 1987. “Parental Decisions Regarding Termination of Pregnancy Following Prenatal Detection of Sex Chromosome Abnormality.” Prenatal Diagnosis 7:239–244.Google Scholar
Holtzman, N. A. 1989. Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era. Baltimore: Johns Hopkins University Press.Google Scholar
Holtzman, N. A., Kronmal, R. A., Doorninck, van W., Azen, C., and Koch, R.. 1986. “Effect of Age at Loss of Dietary Control on Intellectual Performance and Behavior of Children with Phenylketonuria.” New England Journal of Medicine 314:593–598.Google Scholar
Jaroff, L., Nash, J. M., and Thompson, D.. 1989. “The Gene Hunt.” Time March 20:62–67.Google Scholar
Kaback, M., Lim-Steele, J., Dabholkar, D., Brown, D., Levy, N., and Zeiger, K.. 1993. “Tay-Sachs Disease — Carrier Screening, Prenatal Diagnosis, and the Molecular Era. An International Perspective, 1970 to 1993. The International TSD Data Collection Network.” Journal of the American Medical Association 207:2307–2315.Google Scholar
Kadir, R. A., Economides, D. L., Braithwaite, J., Goldman, E., and Lee, C. A.. 1997. “The Obstetric Experience of Carriers of Haemophilia.” British Journal of Obstetrics and Gynaecology 104:803–810.Google Scholar
Kallmann, F. J. 1939. “Informal Discussion.” In Mental Health, No. 9, edited by Moulton, F. R., and Komora, P. O., 143– 145. Lancaster, PA: The Science Press.Google Scholar
Kan, Y. W. and Dozy, A. M.. 1978. “Antenatal Diagnosis of Sickle-Cell Anemia by DNA Analysis of Amniotic-Fluid Cells.” Lancer 2 (8096,28 October): 910–912.Google Scholar
Kessler, S. 1997a. “Psychological Aspects of Genetic Counseling. XI. Nondirectiveness Revisited.” American Journal of Medical Genetics 72:164–171.3.0.CO;2-V>CrossRefGoogle ScholarPubMed
Kessler, S. 1997b. “Genetic Counseling Is Directive? Look Again.”American Journal of Human Genetics 61:466–467.CrossRefGoogle Scholar
Koshland, D. E. 1989. “Sequences and Consequences of the Human Genome.” Science 246:189.Google Scholar
Laken, S. J., Petersen, G. M., Gruber, S. B., Oddoux, C., Ostrer, H., Giardiello, F. M., Hamilton, S. R., Hampel, H., Markowitz, A., Klimstra, D., Jhanwar, S., Winawer, S., Offit, K., Luce, M. C., Kinzler, K. W., and Vogelstein, B.. 1997. “Familial Colorectal Cancer in Ashkenazim Due to a Hypermutable Tract in APC.” Nature Genetics 17:79–83.Google Scholar
Leibel, R. L. 1997. “And Finally, Genes for Human Obesity.” Nature Genetics, 16:218–220.Google Scholar
Lewontin, R. C., Rose, S., and Kamin, L. J.. 1984. Not in Our Genes. New York: Pantheon Books.Google Scholar
Loeben, G. L., Marteau, T. M., and Wilfond, B. S.. 1998. “Mixed Messages: Presentation of Information in Cystic Fibrosis-Screening Pamphlets.” American Journal of Human Genetics 63:1181–1189.CrossRefGoogle ScholarPubMed
Lombardo, P. A. 1985. “Three Generations, No Imbeciles: New Light on Buck v. Bell.” New York University Law Review 60:30.Google Scholar
Loukopoulos, D., Kaltsoya-Tassiopoulou, A., and Fessas, P.. 1983. “Prevention of Thalassemia.” Schweizerische Medizinische Wochenschrift 113:1419–1427.Google ScholarPubMed
Lucarelli, G., Galimberti, M., Polchi, P., Angelucci, E., Baronciani, D., Giardini, C., Politi, P., Durazzi, S. M. T., Muretto, P., and Albertini, F.. 1990. “Bone Marrow Transplantation in Patients with Thalassemia.” New England Journal of Medicine 322:417–421.Google Scholar
Marteau, T. M. and Drake, H.. 1995. “Attributions for Disability: The Influence of Genetic Screening.” Social Science and Medicine 40:1127–1132.Google Scholar
Marteau, T. M., Drake, H., and Bobrow, M.. 1994. “Counselling Following Diagnosis of a Fetal Abnormality: The Differing Approaches of Obstetricians, Clinical Geneticists, and Genetic Nurses.” Journal of Medical Genetics 31:864–867.Google Scholar
Marteau, T. M., Plenicar, M., and Kidd, J.. 1993. “Obstetricians Presenting Amniocentesis to Pregnant Women: Practice Observed.” Journal of Reproductive and Infant Psychology 11:3–10.Google Scholar
Michie, S., Bron, F., Bobrow, M., and Marteau, T. M.. 1997. “Nondirectiveness in Genetic Counseling: an Empirical Study.” American Journal of Human Genetics 60:40–47.Google Scholar
Nelkin, D. and Lindee, S.. 1995. The DNA Mystique: The Gene as Cultural Icon. New York: W. H. Freeman.Google Scholar
Paul, D. B. 1995. Controlling Human Heredity. 1865 to the Present. New Jersey: Humanities Press.Google Scholar
Paul, D. B. 1997. “The History of Newborn Phenylketonuria Screening.” In Promoting Safe and Effective Genetic Testing in the United States. Final Report of the Task Force on Genetic Testing, edited by Holtzman, N. A., and Watson, M. S., 137–160.Baltimore: Johns Hopkins Univeristy Press.Google Scholar
Paul, D. B. and Spencer, H. G.. 1995. “The Hidden Science of Eugenics.” Nature 374:302–304.Google Scholar
Pauling, L. 1963. “Our Hope for the Future.” In Birth Defects, edited by Fishbein, M., 164–170. Philadelphia: J. B. Lippincott.Google Scholar
Pauling, L., Itano, H. A., Singer, S. J., and Wells, I. G.. 1949. “Sickle-Cell Anemia, a Molecular Disease.” Science 110:543.Google Scholar
Petrukhin, L., Dangel, J., Vanderveer, L., Costalas, J., Bellacosa, A., G. G, , Daly, M., and A. K. G., 1997. “The 11307K APC Mutation Does Not Predispose to Colorectal Cancer in Jewish Ashkenazi Breast and Breast-Ovarian Cancer Kindreds.” Cancer Research 57:5480–5484.Google Scholar
Powledge, T. M. 1989. “Toward the Year 2005.” AAAS Observer. Supplement to Science 246 (3 November):6.Google Scholar
Press, N. A. and Browner, C. H.. 1993. “‘Collective Fictions’: Similarities in Reasons for Accepting Maternal Serum Alpha-Fetoprotein Screening among Women of Diverse Ethnic and Social Class Backgrounds.” Fetal Diagnosis and Therapy 8:97–106.Google Scholar
Reilly, P. 1977. Genetics, Law, and Social Policy. Cambridge: Harvard University Press.Google Scholar
Reilly, P. 1991. The Surgical Solution: A History of Involuntary Sterilization in the United States. Baltimore: Johns Hopkins University Press.Google Scholar
Resta, R. G. 1997. “Eugenics and Nondirectiveness in Genetic Counseling.” Journal of Genetic Counseling 6:255–258.Google Scholar
Risch, N. and Botstein, D.. 1996. “A Manic Depressive History.” Nature Genetics 12:351–353.Google Scholar
Rosner, F. 1989. “Confidential Tay-Sachs Carrier Screening.” NY State Journal of Medicine 89:585.Google Scholar
Rothman, B. K. 1986. The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood. New York: Penguin Books.Google Scholar
Rowley, P. T., Loader, S., Sutera, C. J., Walden, M., and Kozyra, A.. 1991. “Prenatal Screening for Hemoglobinopathies. I. A Prospective Regional Trial.” American Journal of Human Genetics 48:439–446.Google Scholar
Saiki, R. K., Scharf, S. J., Faloona, F., Mullis, K. B., Horn, G. T., Erlich, H. A., and Arnheim, N.. 1985. “Enzymatic Amplification of B-globin Genomic Sequences and Restriction Site Analysis for Diagnosis of Sickle Cell Anemia.” Science 230:1350–1354.Google Scholar
Schatzkin, A., Goldstein, A., and Freedman, L. S.. 1995. “What Does It Mean to Be a Cancer Gene Carrier? Problems in Establishing Causality from the Molecular Genetics of Cancer.” Journal of the National Cancer Institute 87:1126–1130.Google Scholar
Schilsky, M. L. 1996. “Wilson Disease: Genetic Basis of Copper Toxicity and Natural History.” Seminars in Liver Diseases 16 (1):83–95.Google Scholar
Schwab, S. G., Albus, M., Hailmay, J., Honig, S., Borrmann, M., Lichtermann, D., Ebstein, R. P., Ackenheil, M., Lerer, B., Risch, N., Maier, W., and Wildenauer, D. R.. 1995. “Evaluation of a Susceptibility Gene for Schizophrenia on Chromosome 6p by Multipoint Affected Sib-Pair Linkage Analysis.” Nature Genetics 11:325–327.Google Scholar
Simpson, J. L. 1993. Essentials of Prenatal Diagnosis. New York: Churchill Livingstone.Google Scholar
Sorenson, J. R., Swazey, J. P., and Scotch, N. A.. 1981. “Reproductive Pasts, Reproductive Futures: Genetic Counseling and Its Effectiveness.” Birth Defects: Original Article Series. 17:1–192.Google ScholarPubMed
Stamatoyannopoulos, G. 1974. “Problems of Screening and Counseling in the Hemoglobinopathies.” In Birth Defects: Proceedings of the Fourth International Conference, edited by Motulsky, A. G., and Ebling, F. J. G., 268–276. Amsterdam: Excerpta Medical.Google Scholar
Steele, M. W. 1983. “Mass Screening for Tay-Sachs Disease.” Hastings Center Report 13:44.Google Scholar
Struewing, J. P., Hartge, P., Wacholder, S., Baker, S. M., Berlin, M., McAdams, M., Timmerman, M. M., Brody, L. C., and Tucker, M. A.. 1997. “The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA2 among Askhenazi Jews.” New England Journal of Medicine 336:1401–1408.Google Scholar
Tambor, E. S., Bernhardt, B. A., Chase, G. A., Faden, R. R., Geller, G., Hofman, K. J., and Holtzman, N. A.. 1994. “Offering Cystic Fibrosis Carrier Screening to an HMO Population: Factors Associated with Utilization.” American Journal of Human Genetics 55:626–637.Google Scholar
Treacy, E., Childs, B., and Scriver, C. R.. 1995. “Response to Treatment in Hereditary Metabolic Disease: 1993 Survey and 10-Year Comparison.” American Journal of Human Genetics 56:359–367.Google Scholar
Verlinsky, Y. and Kuliev, A., 1996. “Preimplantation Polar Body Diagnosis.” Biochemical Molecular Medicine 58 (1): 13–7.Google Scholar
Wertz, D. C. and Fletcher, J. C.. 1988. “Attitudes of Genetic Counselors: A Multinational Survey.” American Journal of Human Genetics 42:592–600.Google ScholarPubMed
White-Van Mourik, J. M., Connor, J. M., and Ferguson-Smith, M. A.. 1992. “The Psychosocial Sequelae of a Second Trimester Termination of Pregnancy for Fetal Abnormality over a Two Year Period.” In Psychosocial Aspects of Genetic Counseling, edited by Evers-Kiebooms, G., Fryns, J., Cassiman, J., and Van den Berghe, H., 57–60. New York: Wiley-Liss.Google Scholar
Wildhagen, M. F., vanOs, T. A. M., Polder, J. J., ten Kate, L. P., and Habbema, J. D. F.. 1998. –Explorative Study of Costs, Effects and Savings of Screening for Female Fragile X Premutation and Full Mutation Carriers in the General Population.” Community Genetics 1:36–47.Google Scholar
Wolff, G. and Jung, C.. 1995. “Nondirectiveness and Genetic Counseling.” Journal of Genetic Counseling 4:3–25.CrossRefGoogle ScholarPubMed
Zhang, Y., Proenca, R., Maffei, M., Barone, M., Leopold, L., and Friedman, J. M.,. 1994. “Positional Cloning of the Mouse Obese Gene and Its Human Homologue.” Nature 371:425–432.Google Scholar
- 10
- Cited by