How much genetic privacy is a consumer entitled to?
Congress is now pondering federal privacy rules that probably will address such questions, so some of the top DNA-testing firms have come together to make sure lawmakers keep the industry’s interests front and center.
The so-called Coalition for Genetic Data Protection is backed by Ancestry, 23andMe and Helix, with an open invitation for other companies to join the club.
[Coalition executive director Steve] Haro told me he wants to make sure there are no carve-outs in a federal privacy law for genetic information. In other words, no provisions that place more stringent rules on DNA testing companies than on, say, Facebook or Google.
Rather, the coalition wants any privacy protections to be one-size-fits-all.
Experts say that would be a big mistake.
“Genetics is totally different,” said David Agus, a professor of medicine at USC and co-founder of Navigenics, a pioneering DNA-testing company. “We need totally different rules.”
I have a suggestion. The DNA-testing industry’s disdain for special treatment notwithstanding, lawmakers should do just that and impose, at least on an interim basis, the same privacy standards applied to other medical data.
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