In this study, 69 women were surveyed who, as a result of prenatal screening, knew they were at risk for carrying a fetus with a disability. Results indicated that most women were referred by their physicians for genetic counseling either because of their age or because of an abnormal blood test. The majority of women indicated they would choose to terminate a pregnancy that tested positive for a disability, but the type of disability of the fetus, either Down syndrome or spina bifida, made no difference in the decision that women believed they would make. The women's intention to terminate a pregnancy appeared to be unrelated to their overall knowledge about disabilities but was negatively related to their knowledge of disability-related services. Although women reported that genetic counseling was helpful, they revealed that they were not given information about future-quality-of-life issues for individuals with disabilities nor provided with the positive as well as the negative aspects of giving birth to a child with disabilities.
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References
1.
Applebaum, E. G., & Firestein, S. K. (Eds.). (1975). A genetic counseling casebook. New York: The Free Press.
2.
Beeson, D., & Golbus, M.S. (1979). Anxiety engendered by amniocentesis. Birth Defects, 15(5), 191—197.
3.
Bell, M., & Stoneman, Z. (2000). Reactions to prenatal testing: Reflection of religiosity and attitudes toward abortion and people with disabilities. American Journal of Mental Retardation, 105, 1—13.
4.
Bender, H. (1974). The right to choose or to ignore. In M. Lipkin, Jr., & P. T. Rowley (Eds.), Genetic responsibility: On choosing our children's genes (pp. 71—81). New York: Plenum.
5.
Blendon, R.J., Benson, J.M., & Donelan, K. (1993). The public and the controversy over abortion. Journal of theAmerican Medical Association, 270, 2871—2875.
6.
Brock, D.J. (1996). Prenatal screening for cystic fibrosis: Five years' experience. Lancet, 347, 148—150.
7.
Bull, C. (1999). Current and potential impact of fetal diagnosis on prevalence and spectrum of serious congenital heart disease at term in the UK. Lancet, 354, 1242—1247.
8.
Cohen, J. (1977). Statistical power analysis for the behavioral sciences (2nd ed.). New York : Academic Press.
9.
Cohen, L.G. (1986). Selective abortion and the diagnosis of fetal damage: Issues and concerns. Journal of the Association for Persons with Severe Handicaps, 11, 188—195.
10.
Elkins, T.E., Stovall, T.G., Wilroy, S., & Dacus, J.V. (1986). Attitudes of mothers of children with Down syndrome concerning amniocentesis, abortion, and prenatal genetic counseling techniques . Obstetrics & Gynecology, 68, 181—184.
11.
Finley, S., Varner, P., Vinson, P., & Finley, W. (1977). Participants' reaction to amniocentesis and prenatal genetic studies. Journal of theAmerican Medical Association , 238, 2277—2379.
12.
Fletcher, J. (1975). Moral and ethical problems of pre-natal diagnosis . Clinical Genetics, 8, 251—257.
13.
Forrester, M.B., Merz, R.D., & Yoon, P.W. (1998). Impact of prenatal diagnosis and elective termination on the prevalence of select birth defects in Hawaii. American Journal of Epidemiology, 148, 1206—1211.
14.
Gatens-Robinson, E. (1996). A defense of women's choice: Abortion and the ethics of care. The Southern Journal of Philosophy, 30(3), 39—65.
15.
Gay, L.R. (1996). Educational research: Competencies for analysis and application. Columbus, OH: Prentice Hall.
16.
Glover, N.M., & Glover, S.J. (1996). Ethical and legal issues regarding selective abortion of fetuses with Down syndrome. Mental Retardation, 34, 207—214.
17.
Heckerling, P.S., Verp, M.S., & Albert, N. (1998). The role of physician preferences in the choice of amniocentesis or chorionic villus sampling for prenatal genetic testing . Genetic Testing, 2(1), 61—66.
18.
Henifin, M.S., Hubbard, R., & Norsigian, J. (1989). Prenatal screening. In S. Cohen & N. Taub (Eds.), Reproductive laws for the 1990's (pp. 155—183). Clifton, NJ: Humana Press.
19.
Hershey, L. (1994). Choosing disability. Ms. Magazine , 5(1), 26—32.
20.
Huck S.W., & Cormier, W.H. (1996). Reading statistics and research. New York: HarperCollins.
21.
Kaplan, D. (1989). Disability rights perspectives on reproductive technologies and public policy. In B. Cohen & N. Taub (Eds.), Reproductive laws for the 1990's (pp. 241—247). Clifton, NJ: Humana Press.
22.
Kaplan, D. (1993). Prenatal screening and its impact on persons with disabilities. Fetal DiagnosticTherapy, 8(Suppl 1), 64—69.
23.
Pueschel, S.M. (1991). Ethical considerations relating to prenatal diagnosis of fetuses with Down syndrome. Mental Retardation, 29, 185—190.
24.
Rice, N., & Doherty, R. (1982). Reflections on prenatal diagnosis: The consumer's views. Social Work in Health Care, 8(1), 47—57.
25.
Richards, I.D.G., Bentley, H.B., & Glenny, A. (1999). A local congenital anomalies register: Monitoring preventive interventions. Journal of Public Health Medicine , 21(1), 37—40.
26.
Roberts, C.D. (1998). The e fects of genetic screening on women's decision-making process when at-risk for giving birth to a child with a disability. Unpublished doctoral dissertation, Texas A&M University, College Station.
27.
Robinson, J., Tennes, K., & Robinson, A. (1975). Amniocentesis: Its impact on mothers and infants. A one-year follow-up study. Clinical Genetics, 8, 97—105.
28.
Rothman, B.K. (1993). The tentative pregnancy: Then and now. Fetal DiagnosticTherapy, 8(Suppl 1), 60—63.
29.
Santalahti, P., Hemminki, E., Latikka, A., & Ryynänen, M. (1998). Women's decision-making in prenatal screening . Social Science and Medicine, 46, 1067—1076.
30.
Saxton, M. (1984). Born and unborn. In R. Arditti, R. Duelli Klein, & S. Minden (Eds.), Test-tube women: What future for motherhood? (pp. 300—311). Boulder, CO: Pandora Press.
31.
Saxton, M. (1987). Prenatal screening and discriminatory attitudes about disability. Women Wise, 4, 8—11.
32.
Smith, D. (1981). Down's syndrome, amniocentesis, and abortion: Prevention or elimination?Mental Retardation, 19, 8—11.
33.
Survey on attitudes of abortion rights: 1999—Survey of Roe v. Wade decision. Planned Parenthood Federation of America [On-line]. Available: http://www.plannedparenthood.org/About/PRESSRELEASES/ 012000Report.html
34.
United States Census Bureau. (1990). Census of population and housing— Summary of social, economic, and housing characteristics. Washington, DC: U.S. Government.
35.
Vaca, R.T., & Vaca, J.L. (1996). Content area reading (5th ed.). New York: HarperCollins .
36.
Velie, E.M., & Shaw, G.M. (1996). Impact of prenatal diagnosis and elective termination on prevalence and risk estimates of neural tube defects in California, 1989—1991 . American Journal of Epidemiology, 144, 473—479.
37.
Vincent, V.A., Edwards, J.G., Young, S.R., & Nachtigal, M. (1991). Pregnancy termination because of chromosomal abnormalities: A study of 26,950 amniocenteses in the southeast. Southern Medical Journal, 84, 1210—1213.
38.
Williamson, P., Harris, R., Church, S., Fiddler, M., & Rhind, J. (1996). Prenatal genetic services for Down's syndrome: Access and provision in 1990—1991. British Journal of Obstetrics and Gynaecology, 103, 676— 683.
