Would loss of genetic privacy protection scare people away from research participation?

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GINA—the Genetic Information Non-Discrimination Act—was written…[to prevent] employers from basing employment decisions on someone’s genes [and to stop] health insurers from denying coverage…if someone had…a gene that upped their cancer risk.

[Now,] a House committee approved a bill called H.R. 1313, which would change GINA’s applicability to “workplace wellness programs.”

[I]f H.R. 1313 passes, bosses could pressure their employees to undergo genetic tests, and demand to see the results.

[Robert Green from Brigham and Women’s Hospital is worried] that people will be less likely to agree to any form of sequencing if there’s a risk that their data can be used against them. Those risks are already a significant deterrent. Green’s team is running two large studies to see if genomics can help to guide the medical care of adults and babies. In both cases, between 15 and 20 percent of people  who initially express interest eventually decide not to enroll specifically because they fear insurance discrimination. Another 25 percent or so decline because they’re worried about the privacy of their data.

If people are put off from taking part in research, medical progress will slow. That would be particularly disastrous for rare genetic diseases, where research into cures often depends on finding enough patients.

The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion, and analysis. Read full, original post: The GOP’s New Bill Would Seriously Disrupt Genetics Research

For more background on the Genetic Literacy Project, read GLP on Wikipedia.