What does choice really mean? Prenatal testing, disability, and special education without illusions.

Author:Pergament, Deborah
Position::Introduction through IV. Shaping Choices: The Prenatally and Postnatally Diagnosed Conditions Awareness Act, p. 55-84 - New Technologies, New Challenges: Women and Prenatal Genetic Testing in the 21st Century

CONTENTS INTRODUCTION I. RECENT CONTROVERSIES: PRESIDENTIAL POLITICS, AMNIOCENTESIS, AND PUBLIC EDUCATION II. A BRIEF OVERVIEW OF THE PAST AND THE CURRENT STATUS OF PRENATAL GENETIC TESTING A. Prenatal Genetic Testing B. Prenatal Screening C. Prenatal Genetic Diagnosis and Array-Based Comparative Genome Hybridization D. Non-Invasive Prenatal Testing III. LEGAL, SOCIAL, AND BIOETHICAL EXAMINATIONS OF PRENATAL GENETIC TESTING AND DISABILITY IV. SHAPING CHOICES: THE PRENATALLY AND POSTNATALLY DIAGNOSED CONDITIONS AWARENESS ACT V. THE ILLUSION OF SPECIAL EDUCATION: THE PRIVATIZATION OF RESOURCES AND CHOICE A. Public Special Education and the IDEA B. Parents as Enforcers: The Privatization of "Rights" and the Illusion of Parents as Equal Members of the "Team" C. Private Remedies: The Real Focus of the IDEA and the Illusion of Public Responsibility for Children with Disabilities D. Vouchers and Charter Schools: The Illusion of Choice and the Ultimate Privatization of Public Education CONCLUSION 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. (1)

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.

Part I of this Article frames the discussion surrounding recent public controversies about prenatal testing, public education, and choice. It explores the choices that some of my clients have made about prenatal genetic testing and considers their experiences in the context of recent political discourse. Part II provides a brief overview of prenatal testing and the choices pregnant women must make in light of emerging prenatal genetic testing technologies. Part III discusses the legal, social, and bioethical implications of prenatal testing and disability. Part IV discusses efforts to address these issues through legislation and the use of public policy to shape the choices resulting from the use of prenatal genetic testing. Finally, Part V examines questions related to the current efforts to constrict reproductive choices involving genetic testing while simultaneously privatizing responsibility for disability. This section considers some of the challenges that arise from not just being pregnant and giving birth but actually parenting children with disabilities. For parents of children with disabilities, educational issues are often a primary concern, and the public school system is the government institution that usually helps define parental choices and responsibilities. My examination focuses on the effects of increased privatization of public special education programs and services. I emphasize the contradictions created by public policies intended to constrict the exercise of reasonable reproductive choices while claiming that the need to foster parental choice justifies the neo-liberal state's transfer of educational services for children with disabilities to the private realms of family and market. (2)


    Professor Harold Pollack notes that "[s]ixty years ago, the birth of an intellectually disabled child was viewed as a private tragedy. Families did the best they could, for as long as they could, or turned to forbidding public institutions for help." (3) The full inclusion and equality of people with disabilities in American society is far from being achieved, but a return to the secrecy, shame, and stigma that had surrounded families with disabled children will likely never occur. Unlike the women of sixty years ago, my clients do not view their children as private tragedies; rather, they proudly advocate for them and openly share their experiences. Clients have shared stories with me about their experiences with prenatal testing and how it has affected parenting a child with disabilities. These stories reveal what influences women's choices whether to undergo prenatal testing and how they use the information that testing reveals to make decisions about their pregnancies. These stories provide insights into the complex and often transformative experience of raising children with disabilities.

    I have observed that women's ethnic backgrounds, religious beliefs, language barriers, and education levels can influence their decisions about prenatal testing. These factors, however, are not predictive or uniform across cultural or ethnic groups. (4) Some of the women I represent have refused prenatal testing for religious or cultural reasons. Yet other women with religious and personal objections to abortion have undergone prenatal testing--not with the intent to terminate ah affected pregnancy, but rather to prepare for the birth and share the diagnosis with family, friends, and health professionals. I have also represented families of children who had been diagnosed prenatally with spina bifida and undergone fetal surgery. Although these children still demonstrate disabilities, their medical and education records indicate that prenatal diagnosis and surgery likely lessened the severity of their conditions.

    Some of the women I have represented underwent prenatal testing because of advanced maternal age and, after learning the fetus had a chromosomal abnormality, chose to continue the pregnancy. These women decided that the challenges associated with the diagnosis neither precluded a good quality of life nor detracted from the potential satisfaction of having a child. Other women have been very open in admitting that they did not wish to have a child with a disability. These women underwent prenatal testing and were told that the fetus had normal chromosomes. However, after demonstrating unusual health issues as newborns and subsequent developmental delays, these children were diagnosed with rare genetic disorders that are not tested for unless there is a known family history. Some of these mothers have since had other children after learning about the possibility of preimplantation genetic diagnosis or prenatal diagnosis for these rare disorders. These women wanted reassurance before undertaking another pregnancy and the opportunity to act on the information if the fetus was similarly affected. Other clients, concerned about the parenting challenges they already face, have elected not to have more children despite the availability of prenatal testing or knowledge that the likelihood of another affected pregnancy is statistically small. (5)

    Many women who underwent prenatal diagnosis and chose to continue an affected pregnancy have shared with me that during their pregnancy and the child's infancy they felt that they exercised independent judgment and made conscious choices despite pressure from partners or family. (6) Ultimately, these women relied on their own personal values and the information they received from health care professionals. They reported that the physicians and genetic counselors they consulted were knowledgeable and helpful. (7)

    The women who learned about their child's disability during the prenatal period have felt sadness and loss about the diagnosis and experienced doubts about their choices. All profess love for their children and value their children's place in their family life, (8) but many remain affected by the difficulties of constantly focusing on their child's health. Before the births of their children, several of my clients had significant experiences with disability: some had siblings with disabilities or...

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