How a lot genetic privateness is a client entitled to?
Congress is now pondering federal privateness guidelines that most likely will tackle such questions, so a number of the high DNA-testing corporations have come collectively to verify lawmakers preserve the trade’s pursuits entrance and heart.
The so-called Coalition for Genetic Information Safety is backed by Ancestry, 23andMe and Helix, with an open invitation for different corporations to affix the membership.
[Coalition executive director Steve] Haro advised me he needs to verify there aren’t any carve-outs in a federal privateness legislation for genetic data. In different phrases, no provisions that place extra stringent guidelines on DNA testing corporations than on, say, Fb or Google.
Somewhat, the coalition needs any privateness protections to be one-size-fits-all.
Consultants say that might be a giant mistake.
“Genetics is completely completely different,” mentioned David Agus, a professor of drugs at USC and co-founder of Navigenics, a pioneering DNA-testing firm. “We want completely completely different guidelines.”
I’ve a suggestion. The DNA-testing trade’s disdain for particular therapy however, lawmakers ought to do exactly that and impose, not less than on an interim foundation, the identical privateness requirements utilized to different medical information.
Learn full, authentic publish: DNA-testing corporations are lobbying to restrict your proper to genetic privateness