Is my baby "defective"? Fetal genetic testing as part of a public health care plan

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Selecting against embryos or foetuses on the basis of predicted disability reinforces the belief that disability is inimical to a worthwhile life. The disability critique of pre-natal testing and pre-implantation genetic diagnosis (PGD) flows from the belief that life with disability can be valuable to individuals, their families, and society. Disability should be understood as just another form of human variation. Reassessment of the crucial elements of the parent–child relationship is fundamental to create a welcoming society for persons with varying abilities. Reforms should be made to the information provided about the lives of persons with disabilities and their families in order to enhance women and couples’ informed reproductive decision-making. Additionally, clinicians and genetics professionals need to understand that society contributes significantly to the difficulties that people with disabilities experience in attaining full participation in family and community life.
In this Article, I advance a new frame through which to organize discourse on disability and the law: the notion of ambivalence. I make two claims, one descriptive and one normative. Descriptively, I argue that ambivalence pervades encounters with disability. Disability attracts because it is a force that makes us human and disability repels because it is a force that threatens our humanity. The tension between these sentiments is not easily tolerated and tends to prompt denials of ambivalence; we embrace a conscious view of disability that belies our mixed sentiments and we suppress reactions to disability that conflict with this conscious view. Normatively, I argue that the law should express and expose ambivalence about disability. When we deny ambivalence, I argue, we cannot account for our genuine sentiments and we cannot prevent suppressed sentiments from emerging, intensified, in harmful and unanticipated forms. To avoid these dangers, the law should prevent the embrace of unequivocal views of disability as valued, devalued, or neutral, and seek to expose ambivalence about disability to the public. This prescription calls into question the prevailing orthodoxies of disability law.
Not only do genetic traits sometimes translate into physical and mental illnesses, they may also manifest themselves as tendencies towards certain behaviours. This discovery has led to the misinterpretation and misapplication of genetic information, and has been directed to unforeseen uses, from criminal defence to genetic racism. The issue is especially sensitive when deciding if and when parents should have access to the genetic information of their children. The author begins with an overview of the principles of behavioural genetics and types of behaviour currently under study. Next, the social and psychological risks associated with genetic testing are presented, along with guidelines necessary to distinguish between testing which is therapeutic and that which is non-therapeutic. The distinction is a crucial one, as the author proposes a therapeutic-benefit test, advocating testing only where an effective intervention is available. Finally, the author concludes that legislation is the more appropriate medium for defining the extent of parental rights once intervention is allowed rather than leaving physicians to decide on a case-by-case basis.