Disability and Genetics: A Disability Critique of Pre‐natal Testing and Pre‐implantation Genetic Diagnosis (PGD)

Abstract

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.

Keywords: disability; ethics; pre‐implantation genetic diagnosis (PGD); pre‐natal diagnostic testing; pre‐natal screening

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Asch, Adrienne, and Barlevy, Dorit(May 2012) Disability and Genetics: A Disability Critique of Pre‐natal Testing and Pre‐implantation Genetic Diagnosis (PGD). In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005212.pub2]