Congress Introduces Online Privacy Bill Addressing Consumer Genetic Tests

Health Tech Companies Are Swallowing Up Consumers’ DNA. Can Congress Safeguard What They Do With It?

Manatt’s Scott Lashway, co-leader of the firm’s privacy and data security practice, spoke with STAT on Congress’ concerns about potential privacy issues with consumer genetics tests.

STAT reports that lawmakers are trying to determine what happens to a person’s genetic data after it is sent in for a health or ancestry genetic test—such as  those offered by Helix, Ancestry and 23AndMe—and whether this genetic data can be kept anonymous.

Senators Amy Klobuchar and Lisa Murkowski are crafting a broad online privacy bill that includes an outline of limitations on what genetic testing companies can do with their customers’ information.

Lashway said an overarching privacy policy could restrict data to the detriment of research and therapeutic development, even as other laws promote data sharing. He also said that many companies are “already focusing on how to keep compliant their data sets that are used for research or clinical aims.”



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