The disability rights critique of prenatal genetic testing: Reflections and recommendations

Hasting Center Report

Volumn 29, Issue 5, 1999, Pages

[No Author Info available]

Author keywords

[No Author keywords available]

Indexed keywords

AMERICANS WITH DISABILITIES ACT 1990; ANALYTICAL APPROACH; ARTICLE; ATTITUDE TO HEALTH; CIVIL RIGHTS; DISABLED PERSON; EDUCATION; FEMALE; FETUS DISEASE; GENETIC DISORDER; GENETIC ENHANCEMENT; GENETIC SCREENING; GENETICS AND REPRODUCTION; HEALTH; HUMAN; LEGAL ASPECT; MORALITY; PARENT; PATERNALISM; PERSONAL AUTONOMY; PREGNANCY; PRENATAL DIAGNOSIS; PSYCHOLOGICAL ASPECT; SOCIOECONOMICS;

AMERICANS WITH DISABILITIES ACT 1990; ANALYTICAL APPROACH; GENETICS AND REPRODUCTION;

ATTITUDE TO HEALTH; CIVIL RIGHTS; DISABLED PERSONS; FEMALE; FETAL DISEASES; GENETIC DISEASES, INBORN; GENETIC ENHANCEMENT; GENETIC SCREENING; HEALTH; HUMANS; MORALS; PARENTS; PATERNALISM; PERSONAL AUTONOMY; PREGNANCY; PRENATAL DIAGNOSIS; VALUE OF LIFE;

EID: 33745208765     PISSN: 00930334     EISSN: None     Source Type: Journal    
DOI: 10.2307/3527746     Document Type: Article

References (57)

1. Cynthia M. Powell, "The Current State of Prenatal Genetic Testing in the U.S.," in Prenatal Genetic Testing and the Disability Rights Critique, ed. Erik Parens and Adrienne Asch (Washington, D.C.: Georgetown University Press, forthcoming).
2. Thomas H. Murray, The Worth of a Child (Berkeley and Los Angeles: University of California Press, 1996), pp. 116-17.
3. Diana W. Bianchi, Timothy M. Crombleholme, Mary D'Alton, Fetology: Diagnosis and Management of the Fetal Patient (Blacklick, Ohio: McGraw Hill, forthcoming).
4. Adrienne Asch, "Reproductive Technology and Disability," in Reproductive Laws for the 1990s, ed. Sherrill Cohen and Nadine Taub (Clifton, N.J.: Humana Press, 1989), pp. 69-124, at 86.
5. Allen E. Buchanan, "Choosing Who Will Be Disabled: Genetic Invervention and the Morality of Inclusion," Social Philosophy and Policy 13 (1996): 18-46.
6. Asch, "Reproductive Liberty," p. 81.
7. Adrienne Asch, "Why I Haven't Changed My Mind," in Parens and Asch, Prenatal Genetic Testing.
8. Dorothy C. Wertz and John C. Fletcher, "Sex Selection through Prenatal Diagnosis: A Feminist Critique," in Feminist Perspectives in Medical Ethics, ed. Helen Bequaert Holms and Laura M. Purdy (Bloomington, Ind.: Indiana University Press, 1992), pp. 240-53.
9. Marsha Saxton, "Disability Rights and Selective Abortion," in Abortion Wars: A Half Century of Struggle, 1950-2000, ed. Rickie Solinger (Berkeley and Los Angeles: University of California Press, 1997), pp. 374-95, at 391.
10. Nancy Press, "Assessing the Expressive Character of Prenatal Testing: The Choices Made or the Choices Made Available?" in Parens and Asch, Prenatal Genetic Testing.
11. Eva Feder Kittay with Leo Kittay, "On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son,"
12. and James Lindemann Nelson, "The Meaning of the Act: Reflections on the Expressive Force of Reproductive Decision-making and Policies," both in Parens and Asch, Prenatal Genetic Testing.
13. Nelson, "Meaning of the Act."
14. Bonnie Steinbock, "Disability, Prenatal Testing, and Selective Abortion," in Parens and Asch, Prenatal Genetic Testing.
15. Asch, "Reproductive Technology and Disability," p. 88.
16. Murray, Worth of a Child pp. 115-41;
17. and Adrienne Asch and Gail Geller, "Feminism, Bioethics, and Genetics," in Feminism and Bioethics: Beyond Reproduction, ed. Susan M. Wolf (New York: Oxford University Press, 1996).
18. William Ruddick, "Pregnancies and Prenatal Tests," in Parens and Asch, Prenatal Genetic Testing.
19. J. A. Blier Blaymore, J. A. Liebling, Y. Morales, M. Carlucci, "Parents' and Pediatricians' Views of Individuals with Meningomyelocile," Clinical Pediatrics 35, no. 3 (1996): 113-17;
20. M. L. Wollraich, G. N. Siperstein, P. O'Keefe, "Pediatricians' Perceptions of Mentally Retarded Individuals," Pediatrics 80, no. 5 (1987): 643-49.
21. Philip Ferguson, Alan Gartner, Dorothy Lipsky, "The Experience of Disability in Families: A Synthesis of Research and Parent Narratives," in Parens and Asch, Prenatal Genetic Testing.
22. M. W. Krauss, "Child-Related and Parenting Stress: Similarities and Differences Between Mothers and Fathers of Children with Disabilities," American Journal of Mental Retardation 97 (1993): 393-404.
23. D. A. Abbott and W. H. Meredith, "Strengths of Parents with Retarded Children," Family Relations 35 (1986): 371-75;
24. A. P. Turnbull, J. M. Patterson, S. K. Behr et al., eds., Cognitive Coping: Families and Disability (Baltimore, Md.: Paul H. Brookes, 1993).
25. J. P. Lehman and K. Roberto, "Comparison of Factors Influencing Mothers' Perceptions about the Future of Their Adolescent Children with and without Disabilities," Mental Retardation 34 (1996): 27-38.
26. Ruth I. Freedman, Leon Litchfield, Marjl Erickson Warfield, "Balancing Work and Family: Perspectives of Parents of Children with Developmental Disabilities," Families in Society: The Journal of Contemporary Human Services (October 1995): 507-14, at 511.
27. Sara Ruddick, Maternal Thinking: Toward a Politics of Peace (Boston: Beacon Press, 1989).
28. Mary Ann Baily, personal communication.
29. Caroline Moon, unpublished paper on file with Luce Program at Welleseley College.
30. Asch, "Reproductive Technology," p. 73.
31. Deborah Kent, "Somewhere a Mockingbird," in Parens and Asch, Prenatal Genetic Testing.
32. Nora Ellen Groce, Everyone Here Spoke Sign Language: Hereditary Deafness an Martha's Vineyard (Cambridge, Mass.: Harvard University Press, 1985).
33. Allen Buchanan, "Choosing Who Will Be Disabled."
34. Dena S. Davis, "Genetic Dilemmas and the Child's Right to an Open Future," Hastings Center Report 27, no. 2 (1997): 7-15;
35. Bonnie Steinbock and Ronald McClamrock, "When Is Birth Unfair to the Child?" Hastings Center Report 24, no. 6 (1994): 15-21;
36. Ronald Green, "Parental Autonomy and the Obligation Not to Harm One's Child Genetically," Journal of Law, Medicine & Ethics 25, no. 1 (1997): 5-16.
37. Steinbock, "Disability Prenatal Testing."
38. Philip Ferguson, personal communication.
39. Kent, "Somewhere a Mockingbird."
40. Alice Domurat Dreger, "The Limits of Individuality: Ritual and Sacrifice in the Lives and Medical Treatment of Conjoined Twins," Studies in the History and Philosophy of Science 29, no. 1 (1998): 1-29.
41. Michael Bérubé, Life As We Know It: A Father, a Family, and an Exceptional Child (New York: Pantheon, 1996).
42. James Lindemann Nelson, personal communication.
43. Jeffrey Botkin, "Fetal Privacy and Confidentiality," Hastings Center Report 25, no. 5 (1995): 32-39;
44. see also Mary Terrell White, "Making Responsible Decisions: An Interpretive Ethics for Genetic Decision-making," Hastings Center Report 29, no. 1 (1999): 14-21.
45. Barbara M. Knoppers, Dorothy C. Wertz, Ruth Chadwick et al., "Defining 'Serious' Disorders in Relation to Genetics Services: Who Should Decide?" American Journal of Human Genetics 57, no. 4, Supplement (1995): A296, abstract 1723;
46. Dorothy Wertz, "What's Missing from Genetic Counseling: A Survey of 476 Counseling Sessions," Abstract, National Society of Genetic Counselors meetings, October 1998.
47. See, however, Murray, Worth of a Child and Erik Parens, ed., Enhancing Human Traits: Ethical and Social Implications (Washington, D.C.: Georgetown University Press, 1998).
48. National Society for Genetic Counselors, "National Society for Genetic Counselors Code of Ethics," in Prescribing Our Future: Ethical Challenges in Genetic Counseling, ed. Dianne M. Bartels, Bonnie S. LeRoy, Arthur L. Caplan (New York: Aldine DeGruyter, 1993), pp. 169-71.
49. J. Teicher, J. Tsipis, D. Wertz et al. "Disability Awareness Training in the Graduate Genetic Counseling Training Program: A Survey of Recent Graduates," Journal of Genetic Counseling 7 (1998): 498.
50. Asch, "Reproductive Technology," Appendix A (pp. 108-17).
51. Marsha Saxton, Disability Feminism Meets DNA: A Study of an Educational Model for Genetic Counseling Students on the Social and Ethical Issues of Selective Abortion. The Graduate School, The Union Institute, Brandeis University (1996) [dissertation].
52. Barbara Bowles Biesecker, personal communication.
53. On parents' views of the future health of their fetus, see Barbara Bowles Biesecker and Theresa M. Marteau, "The Future of Genetic Counseling: An International Perspective," Nature Genetics 22 (June 1999): 133-37.
54. Diana Bianchi, personal communication.
55. Lori B. Andrews, JaneFullerton, Neil Holtzmen et al., Assessing Genetic Risks: Implications for Health Policy (Washington, D.C.: National Academy Press, 1994), p. 150.
56. National Down Syndrome Congress, "Position Statement on Prenatal Testing and Eugenics: Families' Rights and Needs," http://members. carol.net/ndsc/eugenics. html.
57. Nancy Press and Carole Browner, "Collective Silences, Collective Fictions: How Prenatal Diagnostic Testing Became Part of Routine Prenatal Care," in Women and Prenatal Testing, pp. 201-18.