Consumer Confidential: DNA-testing firms are lobbying to limit your right to genetic privacy

David Lazarus, Los Angeles Times on

Published in Business News

Home DNA testing can be fun. I've done it for myself and for my dog. One of us unexpectedly turned out to be 3.1% Italian. The other is mostly Saint Bernard.

The less-fun side of the DNA-testing industry is the brave new world of genetic privacy.

What are these companies doing with our genetic data?

What happens if they find a DNA marker for cancer, diabetes or any other potential illness that insurers and employers would be very interested in knowing about?

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.

The group's website says it seeks "reasonable and uniform privacy regulation that will ensure the responsible and ethical handling of every person's genetic data."

That sounds high-minded and well-intended.

In fact, the coalition is run by a prominent Washington, D.C., lobbying firm -- Mehlman Castagnetti Rosen & Thomas -- and its goal is to shape privacy rules for an industry that now largely operates on the honor system.


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