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. Key Concepts Neither PGD nor any method of pre‐natal testing can accurately indicate a potential child's quality of life. The expressivist argument is only one type of disability critique, which focuses on the negative message that PGD or pre‐natal testing followed by selective embryo implantation or selective abortion sends to current persons living with disabilities. The disability critique is not primarily expressivist. Most negative facets of life with disability can be attributed to societal attitudes and practices that are open to change, and not to the medical condition itself. Clinicians and professionals should understand that they have a role in ending discrimination against people with disabilities, much as they work to practice their professions without sexism or racism. Disability, like sex, race, and ethnicity, is a legitimate, respectable form of human variation. Preventing the incidence of disability is quite different from preventing the existence of persons with disability. Research indicates that people with disabilities and their families fare relatively the same as the rest of the population. The norms of good parenting include fostering and supporting the uniqueness of individual children, with all their mix of talents, personalities, strengths, and problems. Information about the nonmedical facets of life with disability and connections to disability support groups need to be provided to prospective parents deciding about their reproductive future.
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.