Don’t expect to keep that DNA test info private

Stephanie Goldberg reports:

As genetic testing gains popularity both at home and in the doctor’s office, gaps in privacy protections are becoming more apparent.

Existing restrictions are full of loopholes. Federal law prevents genetic discrimination by health insurance companies and employers, but it doesn’t prevent other insurers—including those selling life and disability policies—from making coverage decisions based on an applicant’s DNA.

A bill headed for Gov. J.B. Pritzker’s desk would prevent at-home DNA testing companies in Illinois from sharing information with any health or life insurance company. But there are a number of other ways people can lose control of their sensitive biological data. For example, a long-term care insurer can require consumers to turn over DNA test results before issuing a policy. Worrisome indicators could lead to higher premiums.

Read more on Crain’s Chicago Business.

Yesterday, I attended a fascinating session at the Privacy Law Scholar’s Conference in Berkeley. The attendees were discussing a draft paper by Natalie Ram dealing with law enforcement searching commercial DNA databases like GEDmatch to find people who might be suspects in crimes or even related to suspects.  We discussed a number of concerns, including the fact that a suspect may have never given consent for their DNA to be shared with anyone, and yet their DNA is essentially shared if a relative decides to share THEIR DNA.

“It’s complicated” would be a pretty good summary of the conversation and issues. What should the standard be for law enforcement to be able to access a database to do a broad search for a person with a particular DNA profile or close to that profile?

And while the search/Fourth Amendment issues predominated the discussion, a number of attendees communicated that they were more concerned about other uses — or potential misuses of these databases.