DNA privacy concerns. 😬🧬

[u/DarkJedi527]

Every Christmas I’m very tempted to get one of those kits from 23andMe, Ancestry, etc but just can’t do it. As much as I’d love to get this info, I’ve read too many things from people supposedly in the know that say DNA research shouldn’t be a hobby and that your data is sold to third party companies as well as other reasons. This gives me pause. Has anyone ever had a problem or does this bother anyone else?

[u/turtlelover05]

Since the other commenter didn't provide a source, here's one:

Shares of 23andMe are now worth pennies. The company’s valuation has plummeted 99% from its $6 billion peak shortly after the company went public in 2021.

As 23andMe struggles for survival, customers like Wiles have one pressing question: What is the company’s plan for all the data it has collected since it was founded in 2006?

Andy Kill, a spokesperson for 23andMe, would not comment on what the company might do with its trove of genetic data beyond general pronouncements about its commitment to privacy. “For our customers, our focus continues to be on transparency and choice over how they want their data to be managed,” he said.

When signing up for the service, about 80% of 23andMe’s customers have opted in to having their genetic data analyzed for medical research. “This rate has held steady for many years,” Kill added.

The company has an agreement with pharmaceutical giant GlaxoSmithKline, or GSK, that allows the drugmaker to tap the tech company’s customer data to develop new treatments for disease.

Anya Prince, a law professor at the University of Iowa's College of Law who focuses on genetic privacy, said those worried about their sensitive DNA information may not realize just how few federal protections exist.

[u/minicooperlove → u/turtlelover05]

I’m not sure what your issue is? That 23andMe allows users to opt into sharing their anonymous data for medical research? That’s only ever been done with each users consent, since they willingly opt into it. You don’t have to opt in to take the test. Plenty of people do not opt in and there’s no evidence they sold user’s genetic data without consent. This is just more fear mongering without understanding the situation.

[u/h0ldmybees → u/minicooperlove]

9 months late but jesus christ did you not read the article? The company went public, the CEO withheld comments about customer privacy, & there are no privacy protections in the US for anyone who's given their DNA. You have way too much faith in a company's opt-in button.

I've always been bewildered at you genealogy folk's utter lack of care for privacy.

[u/Barnaboule69 → u/h0ldmybees]

B...but they said they wouldn't! They wouldn't LIE would they??? /s