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Journal of Genetic Counseling

, Volume 14, Issue 3, pp 183–187 | Cite as

Disability Rights, Prenatal Diagnosis and Eugenics: A Cross-Cultural View

  • Aviad E. Raz
Professional Issues

Abstract

This paper considers the disability rights critique of genetic testing in the context of different communities and the issue of nondirectiveness. Despite the wide usage of genetic diagnosis in Israel, no public debate has emerged there concerning disability rights and prenatal testing. The common attitude that emerged from interviews with Israeli representatives of organizations “of’’ and “for’’ people with genetic diseases and congenital disabilities can be described as a two-fold view of disability: support of genetic testing during pregnancy, and support of the disabled person after birth. This two-fold view is explained as a secular construction situated in legal, economic and cultural contexts. The paper concludes by considering the implications of the “two-fold view’’ of disability for the profession of genetic counseling. It is argued that awareness of the existence of conflicting views among clients—such as the view of the ‘disability critique’ as well as of the “two-fold view of disability’’—should strengthen the significance of nondirectiveness.

Key Words

disability rights prenatal diagnosis eugenics Israel non-directiveness 

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References

  1. Amir, D., & Binyamini, O. (1992a). Abortion approval as ritual of symbolic control. In C. Feinman (Ed.), The criminalization of women’s body (pp. 1–25). Binghampton, NY: Haworth Press.Google Scholar
  2. Amir, D., & Binyamini, O. (1992b). The abortion committees: Educating and controlling women. J Women Crim Justice, 3, 5–25.Google Scholar
  3. Asch, A. (1988). Reproductive technology and disability. In S. Cohen & N. Taub (Eds.), Reproductive laws for the 1990s (pp. 59–101). Clifton, NJ: Humana Press.Google Scholar
  4. Asch, A. (1994). The human genome and disability rights. Disability rag and resource (pp. 12–15). Jan/Feb.Google Scholar
  5. Ben-Eliezer, U. (1995). A nation in arms: State, nation and militarism in Israel’s first years. Comp Stud Soc Hist, 37, 264–285.Google Scholar
  6. Ben-Zvi, B. (1995). Over-protection versus discrimination in legislation for the disabled (in Hebrew). Soc Secur, 43, 45–53.Google Scholar
  7. Benjamin, C., Colley, A., Donnai, D., Kingston, H., Harris, R., & Kerzin-Storrar, L. (1993). Neurofibromatosis type-1: Knowledge, experience and reproductive decisions of affected patients and families. J Med Genet, 30, 567–574.PubMedGoogle Scholar
  8. Biesecker, B., & Hambi, L. (2000). What difference the disability community arguments should make for the delivery of prenatal genetic information? In E. Parens & A. Asch (Eds.), Prenatal testing and disability rights (pp. 341–357). Washington, DC: Georgetown University Press.Google Scholar
  9. Blumberg, L. (1994). The politics of prenatal testing and selective abortion. Sex Disabil, 12(2), 135–153.Google Scholar
  10. Bolderson, H., & Mabbett, D. (1991). Social policy and social security in Australia, Britain and the U.S.A. Aldershot: Avebury.Google Scholar
  11. Buchanan, A. (1996). Choosing who will be disabled: Genetic intervention and the morality of inclusion. Soc Philos Policy, 13, 18–46.PubMedGoogle Scholar
  12. Chen, E., & Schiffman, J. (2000). Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities. J Genet Couns, 9(2), 137–152.CrossRefPubMedGoogle Scholar
  13. Conway, S., Allenby, K., & Pond, M. (1994). Patient and parental attitude toward genetic screening and its implications at an adult cystic fibrosis centre. Clin Genet, 45, 308–312.PubMedGoogle Scholar
  14. Furu, T., Kaariainen, H., Sankila, E., & Norio, R. (1993). Attitudes toward prenatal diagnosis and selective abortion among patients with retinitis pigmentosa or choroideremia as well as among their relatives. Clin Genet, 43, 160–165.PubMedGoogle Scholar
  15. Gal, J. (2001). The perils of compensation in social welfare policy: Disability policy in Israel. Soc Serv Rev, 75(2), 225–246.CrossRefGoogle Scholar
  16. Kahn, S. M. (2000). Reproducing Jews: A cultural account of assisted conception. Durham: Duke University Press.Google Scholar
  17. Levy-Schreiber, E., & Ben-Ari, E. (2000). Body-building, character-building and nation-building: Gender and military service in Israel. Stud Contemp Judaism, 16, 171–190.Google Scholar
  18. National Down Syndrome Congress (1994). Position Statement on Prenatal Testing and Eugenics: Families’ Rights and Needs. http://members.carol.net/ndsc/eugenics.html
  19. Parens, E., & Asch, A. (2003). Disability rights critique of prenatal genetic testing. Ment Retard Dev Disabil Res Rev, 9(1), 40–47.CrossRefPubMedGoogle Scholar
  20. Parens, E., & Asch, A. (Eds.). (2000). Prenatal testing and disability rights. Washington, DC: Georgetown University Press.Google Scholar
  21. Parens, E., & Asch, A. (1999). The disability rights critique of prenatal genetic testing: Reflections and recommendations. Hastings Cent Rep, 29(5), S1–S22.Google Scholar
  22. Raz, A. (2004). ‘Important to test, important to support’: Attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel, Soc Sci Med, 59(9), 1857–1866.CrossRefPubMedGoogle Scholar
  23. Sher, C., Romano-Zelekha, O., Manfred, S., & Shohat, T. (2003). Factors affecting performance of prenatal genetic testing by Israeli Jewish women. Am J Med Genet, 120A(3), 418–422.CrossRefGoogle Scholar
  24. Shohat, M., et al. (2003). Prenatal diagnosis of Down syndrome: Ten year experience in the Israeli population. Am J Med Genet, 122A(3), 215–222.CrossRefGoogle Scholar
  25. Shuval, J., & Anson, O. (2000). Social structure and health in Israel. Jerusalem: Magnes Press, The Hebrew University (in Hebrew).Google Scholar
  26. Varnet, S., & Naon, S. (1996). Recipients of the general disability benefit, 1994–1995 (in Hebrew). Jerusalem: National Insurance Institute.Google Scholar
  27. Ward, L. (2002). Whose right to choose? The ‘New’ genetics, prenatal testing and people with learning difficulties. Crit Pub Health, 12(2), 187–200.CrossRefGoogle Scholar
  28. Weiss, M. (2002). The chosen body: The politics of the body in Israeli society. Stanford: Stanford University Press.Google Scholar
  29. Wertz, D. (1998). Eugenics is alive and well: A survey of genetic professionals around the world. Sci Con, 3–4, 493–510.Google Scholar
  30. Zlotogora, J., & Leventhal, A. (2000). Screening for genetic disorders among Jews: How should the Tay-Sachs screening program be continued? Isr Med Assoc J, 2, 665–667.PubMedGoogle Scholar

Copyright information

© Springer Science + Business Media, Inc. 2005

Authors and Affiliations

  1. 1.Department of Behavioral SciencesBen-Gurion University of the NegevBe’er-ShevaIsrael
  2. 2.Ben-Gurion UniversityIsrael

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