Pergament on Choice in Prenatal Testing and Special Education

Just out: Deborah Pergament, What Does Choice Really Mean? Prenatal Testing, Disability, and Special Education Without Illusions, 23 Health Matrix 56 (2013).  From the introduction:

Debates over prenatal testing, disability, and public education are at the very center of my everyday work as an attorney. My legal practice focuses on representing children and families in complex special education and adoption law matters. Many of the children I represent are affected by genetic syndromes, chromosomal abnormalities, spina bifida and other neural tube defects, or disabilities caused by pregnancy, birth, and neonatal complications. I also advise several educational, medical, and social service organizations. This work involves counseling medical geneticists and genetic counselors who provide prenatal genetic testing services and develop new genetic technologies.

Through these experiences, I am uniquely able to observe and participate in the debates over the ethical and legal parameters that govern women’s choices about prenatal testing and the responsibilities of individual families and society in caring for the wellbeing of children with disabilities. This Article considers the experiences of families with children affected by genetic conditions and the issues raised by prenatal genetic testing technologies. It raises questions about the appropriateness of state involvement in the choices women make about prenatal testing, particularly under the Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008.

Paradoxically, those political and social actors that most often seek to involve the state in reproductive choice also support the privatization of responsibility for the care and education of children with disabilities. As a result, the privacy right relating to intimate relationships, the family, and decisions about whether to have a child is becoming less absolute. I argue that this is not accidental, as the expansion of public surveillance and regulation of women’s reproductive decisions and the related demonizing of the exercise of reproductive choice has diverted attention from efforts to provide for the social welfare by developing the necessary response of a just society. Such a response should involve: (1) the promulgation of rational regulations governing the development, access, and use of existing and emerging prenatal genetic screening and diagnostic technologies; and (2) the development of policies that give all children, including ones affected by genetic disorders, access to meaningful educational opportunities and health care.