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Prenatal Testing and Disability Rights

Prenatal testing such as amniocentesis has rapidly become a routine part of pregnancy care, and new tests can detect more and more genetic anomalies. While most people unquestioningly herald this as a great advance, others worry that prenatal testing, and the concomitant use of pregnancy terminations when potential disabilities are detected, is entering into general use without enough attention to its implications.

According to Adrienne Asch, a professor at Wellesley College and former Our Bodies Ourselves board member, "Using prenatal tests to prevent the births of babies with disabilities seems to be self-evidently good to many people."1 But for many people with disabilities, the message implicit in the practice of abortion based on genetic characteristics is, "It is better not to exist than to have a disability. Your birth was a mistake. Your family and the world would be better off without you alive."2

Disability activists say underlying (mis)assumptions about disability influence womenís decisions about whether to abort. They believe families need more accurate information about various disabilities and the lives of people with disabilities. Activists also point out that discrimination has a huge impact on the lives of people with disabilities, and that "many of the limits on quality of life come not from medical burdens, but from barriers set up by society, from stigmatization to elevators that don't work."3

The issue has added complexity to the debate over abortion, and has caused conflict between some prochoice activists who fear such concerns will impinge on womenís right to choose abortion, and disability rights activists who believe in choice and yet feel uncomfortable, and sometimes even oppose, terminations for specific prenatal findings.

One of the most interesting and in-depth explorations of the moral issues raised by new genetic technologies comes from a two-year project undertaken by the Hastings Center, a health ethics research center. Erik Parens and Adrienne Asch, the coordinators of the project, engaged a group of scholars, philosophers, ethicists, biologists, physicians, sociologists and educators to grapple with the question of whether prenatal testing for genetic disabilities "sends a message" that devalues disabled people. They hoped the group would find common ground and set clear moral limits for when it would be appropriate to use the technology for selective abortion and when it wouldn't. After meeting for two years, the group could not reach consensus, but their perspectives and processes are illuminating. The final report of this project, The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations, is unfortunately not available online, though you can purchase it for a $10 fee from the Hastings Center.

Parens and Asch expanded the report in the recently published Prenatal Testing and Disability Rights, and while the book isnít available online, an excellent review, Airing the 'Disability Perspective' But Getting Few Converts, is available online at the website of The Ragged Edge, a disability rights magazine.

In their article Disability, Community and Identity: Perceptions of Prenatal Screening4authors Deborah Kaplan and Marsha Saxton explain the disability rights perspective by examining the social origins of disability discrimination. Saxton and Kaplan compare the rising awareness of disabled people to the womenís movement: "As feminists have transformed women's sense of self, the disability community has reframed the experience of having a disability. In part, through developing a sense of community, we've come to realize that the stereotyped notions of the 'tragedy' and 'suffering' of 'the disabled', result largely from the isolation and exclusion of disabled people from mainstream society."5

Disability activists argue that many women who undergo prenatal testing don't understand the limits of the technology. People often believe that genetic testing will ensure that they will give birth to a healthy child, but in reality many of the disabilities of those impaired at birth are not genetically determined. In addition, while the physical or mental effects of many conditions vary greatly, genetic testing gives no indication of how severely a child will be affected. Finally, more than 80% of disabled people are not born with their impairment but acquire it.

The GeneLetter article Genetic Testing Spurs Fear of Eugenics, explores the implications of these realities: "The mere offering of such tests sets a minimum standard for admission into the living world Ö with dangerous implications for those who are already participants."6 People with disabilities will always be part of our world, these activists say, and society would be better served by improving accessibility and access and changing its attitudes toward people with disabilities.

Julie Mak, a student in genetic counseling program, has created an excellent website that provides an overview of the ethical issues raised by prenatal testing. Her article Genetic Testing and People with Disabilities explores the different personal reactions and perspectives of people with disabilities as well as supporters of genetic testing, and suggests possible ways that the field of genetic counseling can be more responsive to these concerns.

Other websites of interest:

*Please note: This report is posted as .pdf file, which means that you need to have Adobe Acrobat Reader installed on your computer in order to read it.  You can download Adobe Acrobat Reader for free by clicking here.

ENDNOTES

  1. http://www.raggededgemagazine.com/0101/0101bkrev1.htm [back to text]

  2. Disability Community and Identity: Perceptions of Prenatal Screening, Kaplan et al, GeneWatch, Volume 14, No. 2 March 2001 Special Section: Disability, Reproduction, and Biotechnology. [back to text]

  3. Lehrman, Sally: 'Prenatal genetic testing spurs fear of eugenics,' GeneLetter, 1 Sep 2000. [back to text]

  4. Unfortunately this article is no longer online. It is from GeneWatch, Volume 14, No. 2 March 2001 Special Section: Disability, Reproduction, and Biotechnology. [back to text]

  5. Disability Community and Identity: Perceptions of Prenatal Screening, Kaplan et al, GeneWatch, Volume 14, No. 2 March 2001 Special Section: Disability, Reproduction, and Biotechnology. [back to text]

  6. Lehrman, Sally: 'Prenatal genetic testing spurs fear of eugenics,' GeneLetter, 1 Sep 2000. [back to text]

Written By Our Bodies, Ourselves
Last revised May 2003

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