The Importance of Attitudes toward and Understanding of Disability and Science in the Age of Genetics

Abstract

This article reports concerns among disability community members that the implications of genetic research will be driven by mistaken beliefs about genetics and negative attitudes toward disability as identified in a qualitative study funded by the National Human Genome Research Institute. In addition to reporting the nature and the context of disability community concerns related to perceptions of disability and of human genetics, the authors discuss the historic role of attitudes toward disability and science in popularizing eugenics in early 20th century America as evidence of the seriousness of these concerns.

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“…(p. 192). They found that this was indeed the case in their research with several focus groups of persons with disabilities, citing that disability is still largely viewed by society as a burden and that most medical professionals lack knowledge of the real lives of disabled people (Stowe, Turnbull, Pence, et al, 2007). Concerning prenatal genetic testing, several studies have found that 80% to 90% of women terminate their pregnancies after receiving a diagnosis of Down syndrome (Kramer et al, 1998;Rosch, Steinbicker, & Kopf, 2000), giving credence to the fear that increased genetic testing may lead to extermination or abortion of fetuses prenatally diagnosed with autism.…”

“…These policies may now seem outdated and "a thing of the past"; however, disabled people still have relevant concerns about genetic discrimination, the effects of genetic research, and violations of privacy . Stowe, Turnbull, Pence, et al (2007) asked the important question, "Are persons with disabilities and their families still concerned that discriminatory attitudes will drive genetic research and the implementation of genetics?" (p. 192).…”