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Still Concerns

Although there haven't been many genetic discrimination-related lawsuits in the US — 333 cases in 2013, as compared to more than 90,000 other discrimination cases — people are still concerned about it. In an opinion piece appearing in the New England Journal of Medicine last week, Brigham and Women's Hospital's Robert Green and his colleagues write that the Genetic Information Nondiscrimination Act (GINA) aimed to fill two purposes when it was signed into law seven years ago: to prevent discrimination and to assuage fears about genetic testing.

A survey of 1,479 people in 2014 performed by Green and his colleagues indicates that many people aren't aware of the law and that knowledge of it doesn't actually reassure people. Thirty percent of respondents were more concerned about discrimination after reading a description of the law, they add.

"We noticed how present in the minds of our participants concerns about genetic discrimination were — particularly by employers and insurance," Green tells The Verge.

These concerns may hamper research as people decline to participate in genetic projects. As GenomeWeb notes, about a quarter of prospective participants for the MedSeq project, which Green is running to study whole-genome sequencing in the clinic, decided not to take part because they feared discrimination by insurance companies. The law prohibits discrimination by health insurance companies, but not by long-term or life insurance companies.

"What was fascinating to me was that the very language of GINA was attempting to reassure the public, so that they could take advantage of the fruits of genomic research," Green tells The Verge.

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