Hostname: page-component-745bb68f8f-s22k5 Total loading time: 0 Render date: 2025-02-05T15:18:10.788Z Has data issue: false hasContentIssue false
  • English
  • Français

Genetic Counseling and the Disabled: Feminism Examines the Stance of Those Who Stand at the Gate

Published online by Cambridge University Press:  25 March 2020

Annette Patterson  and
Martha Satz
Get access Rights & Permissions [Opens in a new window]

Abstract

This essay examines the possible systematic bias against the disabled in the structure and practice of genetic counseling. Finding that the profession's “nondirective” imperative remains problematic, the authors recommend that methodology developed by feminist standpoint epistemology be used to incorporate the perspective of disabled individuals in genetic counselors' education and practice, thereby reforming society's view of the disabled and preventing possible negative effects of genetic counseling on the self-concept and material circumstance of disabled individuals.

Type
Feminism and Disability II
Information
Hypatia , Volume 17 , Issue 3: Special Issue: Feminism and Disability, Part 2 , Summer 2002 , pp. 118 - 142
Copyright
Copyright © 2002 by Hypatia, Inc.

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

Adrienne, Asch. 1989. Reproductive technology and disability. In Reproductive laws for the 1990s, ed. Cohen, Sherrill and Taub, Nadine. Clifton, N.J.: Humana Press.Google Scholar
Adrienne, Asch 1993. The human genome and disability rights: Thoughts for researchers and advocates. Disability Studies Quarterly 13(3): 3–5.Google Scholar
Adrienne, Asch 2000. Why I haven't changed my mind about prenatal diagnosis: Reflections and refinements. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington D. C.: Georgetown University Press.Google Scholar
Bérubé, Michael. 1996. Life as we know it: A father, a family, and an exceptional child. New York: Random House.Google Scholar
Charles, Bosk. 1992. All God's mistakes: Genetic counseling in a pediatric hospital. Chicago: University of Chicago Press.Google Scholar
Collins, Patricia Hill. 1990. Black feminist thought: Knowledge, consciousness, and the politics of empowerment. Boston: Unwin Hyman.Google Scholar
Robert, Crouch. 1997. Letting the deaf be deaf: Reconsidering the use of cochlear implants in prelingually deaf children. Hastings Center Report 27(4): 14–21.Google Scholar
Davis, Dena S. 1997a. Cochlear implants and the claims of culture? A response to Lane and Grodin. Kennedy Institute of Ethics Journal 7(3): 253–58.CrossRefGoogle Scholar
Davis, Dena S. 1997b. Genetic dilemmas and the child's right to an open future. Hastings Center Report 27(2): 7–15.CrossRefGoogle Scholar
Phillip, Davis, and Bradley, John. 1997. The meaning of normal. Perspectives in Biology and Medicine 40(1): 68–77.Google Scholar
Joel, Feinberg. 1992. The child's right to an open future. In Freedom and fulfillment. Princeton: Princeton University Press.Google Scholar
Felker, Kitty S. 1994. Controlling the population: Views of medicine and mothers. Research in Sociology of Health Care 11:25–38.Google Scholar
Carol, Gilligan. 1982. In a different voice: Psychological theory and women's development. Cambridge, Mass.: Harvard University Press.Google Scholar
Sandra, Harding. 1993. Rethinking standpoint epistemology: What is strong objectivity. In Feminist epistemologies, ed. Alcoff, Linda and Potter, Elizabeth. New York and London: Routledge.Google Scholar
Nancy, Hartsock. 1983. The feminist standpoint: Developing the ground for a specifically feminist materialism. In Discovering reality, ed. Harding, Sandra and Hintikka, Merrill. Dordrecht: Reidel.Google Scholar
Helm, David T., Miranda, Sara, and Chedd, Naomi Agoff. 1998. Prenatal diagnosis of Down syndrome: Mothers’ reflections on supports needed from diagnosis to birth. Mental Retardation 36(1): 55–61.2.0.CO;2>CrossRefGoogle Scholar
Bell, Hooks. 1995. Killing rage: Ending racism. New York: Henry Holt and Company.Google Scholar
William, James. 1897. The will to believe. In The will to believe, and other essays in popular philosophy. New York: Longmans, Green, and Co.Google Scholar
Leon, Kass. 1983. Implications of the human right to life. In Intervention and reflection: Basic issues in medical ethics, ed. Munson, Ronald. Belmont, Calif.: Wadsworth.Google Scholar
Deborah, Kent. 2000. Somewhere a mockingbird. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington D. C.: Georgetown University Press.Google Scholar
Seymour, Kessler. 1997a. Genetic counseling is directive? Look again. American Journal of Human Genetics. 48 (3): 466–67.Google Scholar
Seymour, Kessler 1997b. Psychological aspects of Genetic Counseling XI: Nondirectiveness revisited. American Journal of Medical Genetics 72(2): 164–72.Google Scholar
Jason, Kingsley, and Levitz, Mitchell. 1994. Count us in: Growing up with Down syndrome. New York: Harcourt Brace.Google Scholar
Kittay, Eva Feder, with Kittay, Leo. 2000. On the expressivity and ethics of selective abortion for disability: Conversations with my son. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington, D. C.: Georgetown University Press.Google Scholar
A life apart: Hasidism in America 1997. Produced and directed by Menachem Daum and Oren Rudavsky. 95 min. First Run/Icarus Films. Videocasette.Google Scholar
Lugones, Maria C., and Spelman, Elizabeth V. 1983. Have we got a theory for you! Feminist theory, cultural imperialism and the demand for “the woman's voice” Women's Studies International Forum 6(6): 573–81.CrossRefGoogle Scholar
Marteau, T.M., Slack, J., Kidd, J., and Shaw, R.W. 1992. Presenting a routine screening test in antenatal care: Practice observed. Public Health 106(2): 131–41.CrossRefGoogle ScholarPubMed
Jenny, Morris. 1991. Pride against prejudice: Transforming attitudes to disability. Philadelphia: New Society.Google Scholar
William, Morris ed. 1985. The American heritage dictionary of the English language. New York: Houghton Mifflin.Google Scholar
Nel, Noddings. 1984. Caring, a feminine approach to ethics and moral education. Berkeley: University of California Press.Google Scholar
Erik, Parens, and Asch, Adrienne. 2000a. Introduction. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington, D. C.: Georgetown University Press.Google Scholar
Erik, Parens, and Asch, Adrienne 2000b. The disability rights critique of prenatal genetic testing: Reflections and recommendations. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington, D. C.: Georgetown University Press.Google Scholar
Nancy, Press. 2000. Assessing the expressive character of prenatal testing: The choices made or the choices made available. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington, D. C.: Georgetown University Press.Google Scholar
Press, Nancy Anne, and Browner, Carole H. 1994. Collective silences, collective fictions: How prenatal diagnostic testing became part of routine prenatal care. In Women & prenatal testing: Facing the challenges of genetic technology ed. Rothenberg, Karen H. and Thomson, Elizabeth J.Columbus: Ohio State University Press.Google Scholar
Rayna, Rapp. 1988. The power of positive diagnosis: Medical and maternal discourses on amniocentesis. In Childbirth in America: Anthropological perspectives, ed. Michaelson, Karen L.South Hadley, Mass.: Bergin and Garvey.Google Scholar
Adrienne, Rich. 1986. What does a woman need to know? In Blood, bread, and poetry: selected prose 1979–1985. New York, London: W.W. Norton and Company.Google Scholar
William, Ruddick. 2000. Ways to limit prenatal testing. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington, D. C.: Georgetown University Press.Google Scholar
Sacks, Oliver W. 1989. Seeing voices: A journey into the world of the deaf. Berkeley: University of California Press.Google Scholar
Marsha, Saxton. 1984. Born and unborn. In Test‐tube women: What future for motherhood, ed. Arditti, Rita, Klein, Renatti Duelli, and Minden, Shelley. Boston: Routledge/Kegan.Google Scholar
Marsha, Saxton 1996. Disability feminism meets DNA: A study of an educational model for genetic counseling students on the social and ethical issues of abortion. Ph.D. diss., Union Institute.Google Scholar
Marsha, Saxton 2000. Why members of the disability community oppose prenatal diagnosis and selective abortion. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington, D. C.: Georgetown University Press.Google Scholar
Silvers, AnitaWasserman, Dave, and Mahowald, Mary. 1998. Disability, difference, discrimination. Lanham, Md.: Rowman and Littlefield.Google Scholar
Marc, Steinbach. 1964. The normal in cardiovascular diseases. Lancet 2: 1116–18.Google Scholar
Suter, Sonia M. 1998. Value neutrality and nondirectiveness: Comments on future directions in genetic counseling. Kennedy Institute of Ethics Journal 8(2): 161–63.CrossRefGoogle ScholarPubMed
Joan, Tollifson. 1997. Imperfection is a beautiful thing. In Staring back: The disability experience from the inside out, ed. Fries, Kenny. New York: Plume.Google Scholar
Walker, Ann Platt. 1998. The practice of genetic counseling. In A guide to genetic counseling, ed. Baker, Diane L.Schuette, Jane, and Uhlmann, Wendy. New York: Wiley‐Liss.Google Scholar
Susan, Wendell. 1996. The rejected body. New York: Routledge.Google Scholar
Wertz, Dorothy C. 2000. Drawing lines: Notes for policymakers. In Prenatal testing and disability rights, ed. Parens, Erik and Asch, Adrienne. Washington D. C.: Georgetown University Press.Google Scholar
Peter, Williams. 1995. Duties and decency. The Mount Sinai Journal of Medicine 62(2): 98–101.Google Scholar