Genetic Testing and the Rush to Perfection

From NCIL: For More Info, Go Here…

Scientific, medical, and technological advances over the past decade have made genetic testing more commonly known and widely accepted among healthcare professionals and the public. Entrepreneurs offer direct- to- consumer genetic testing for individuals seeking knowledge on everything from their ancestry to their chances of developing breast cancer.

The potential for discrimination against people with genetic conditions by entities such as employers and health insurers was recognized with the passage of the Genetic Information and Nondiscrimination Act (GINA) of 2008, which provides protections from employer discrimination based on genetic factors. If and how prenatal genetic testing comprises discrimination against people with genetic conditions, however, has been more controversial and has had a much more limited federal and state response.

NCD is concerned that prenatal and adult genetic testing laboratories have exploded in terms of number in the United States, with very little regulation or oversight beyond the Centers for Medicare and Medicaid Services (CMS) ensuring that the laboratories function properly and the tests correctly measure the DNA components claimed. Additionally, providers involved in prenatal genetic screening and diagnosis have little time to provide in- depth counseling about the tests and the outcome of those tests. Genetic counselors, who would typically stand on the front lines of providing sufficient relevant information to facilitate informed reproductive choices for women, are subject to few requirements when it comes to disability cultural or social awareness and are increasingly being co- opted into the commercial genetic testing industry when they are directly hired by industry.

Genetic Testing and the Rush to Perfection examines the impact of genetic testing on people with disabilities and on disability communities, examines the range of scientific, commercial, medical/professional, and social factors that converge around prenatal genetic testing as it affects people with disabilities, and also provides an update on the interaction between genetic testing and employment discrimination. It concludes with recommendations aimed at greater federal and state oversight and quality control of genetic tests, and improving genetic counselor education on disability.

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