23andMe is on the brink. What happens to all its DNA data?

[douglas9]

Last month, Chenedy Wiles finally got around to it.

The 27-year-old traveling nurse spit into a tube and mailed it to 23andMe, where the genetic testing company’s lab examined her DNA and generated a glimpse of her ancestry.

“One of the reasons I decided to get the test is that as an African American, it’s very common for our heritage to get lost,” said Wiles, who lives in Chicago.

https://www.npr.org/2024/10/03/g-s1-25795/23andme-data-genetic-dna-privacy

[mopinko]

1. i heard this the other day. i was shocked.

they just came out w a ‘new & improved’ version. i took it.
i thought they were raking it in from the drug companies.

[MichMan]

2. China will buy it

[dalton99a]

3. What will 23andMe do with the DNA data of 15 million customers?

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.

For instance, the Health Insurance Portability and Accountability Act, also known as HIPAA, does not apply to 23andMe since it is a company outside of the health care realm.

“HIPAA does not protect data that’s held by direct-to-consumer companies like 23andMe,” she said.

[Jirel]

10. Let's debunk something about HIPAA.

HIPAA protection only applies for “covered entities.” There are many types of medical data collectors that do not fall under this definition.
* Wearable tech providers.
* Health app creators.
* Healthcare providers that do not deal with electronic data.
* Research groups, with consent or several other carve-outs.
* School-based health programs, unless providing care to the general public.
* Public health investigations, disease tracking, and a variety of emergency situations.
* Workers comp claims.
* Life insurance companies.
* Employers.
* Schools in general, with regard to the student health data they collect.
* Medical facilities that only take cash (free clinics, or those that don’t accept insurance) may not be covered (some other factors apply)
* State agencies, like Child Protective Services.
* Law enforcement agencies.

There are more than these, but you can see that in general, people believe their health data is much, MUCH more protected by HIPAA than it really is.

[ecstatic]

4. This is why I put off doing it

Unfortunately, republicans in Congress have been more concerned about turning back the clock than dealing with the issues of today.

[tanyev]

5. And if an authoritarian president with an administration full of

white supremacists got their hands on that data……

[bamagal62]

6. Many people I know

Have done it without thinking about the consequences. I’ve refused to do it and I’ve also advised that it’s not a good idea. Once that info is out there, it’s out there.

[Jirel]

7. Too late to think about that.

This cracks me up. NOW people are freaking out about this, when 23andMe has been making its money all along BY SELLING ITS CUSTOMERS’ DATA? That ship sailed years ago. Any additional dissemination by a new owner is no different than what’s been happening.

This is why some of us never do this kind of “casual curiosity” genetic testing, or drive modern cars that “phone home” constantly on infotainment systems, or but “smart” garbage for our homes that sends data to the manufacturer or puts our data on a cloud (i.e., somebody else’s hard drive that they have full access to, but we don’t). We’re not paranoid. We just don’t think our lives are any corporation’s business, and choose to not have our data become their product.

[BlueTsunami2018]

8. I never understood why anyone would willingly give their DNA to a corporation.

I don’t understand why you would give it to anyone who can store it or use it in any way.

[elocs]

9. It's really not hard to understand.

Right or wrong, most people are trusting and not paranoid.

[BlueTsunami2018]

11. I don't think it's "paranoid" to be guarded.

Particularly with very sensitive information. People are foolish to give that away. Hell, they actually pay these companies to take it.

[Ms. Toad]

12. Two reasons my daughter did

She has a rare disease that is genetically linked, no medical treatment, no cure. They were doing a study that might lead to more data than any medical study can, because of how rare it is, how geographically separate the patients are.

She was also conceived by donor insemination, and all non-genetic means of finding biological relatives had been exhausted. Given that she has a rare disease (and another chronic disease), family history is helpful, bordering on critical. She has found her biological father (and now has full biological history) as well as a half dozen half-siblings.

And they were not free to "use it in any way." There are restrictions. We thoroughly discussed both uses and restrictions on use before she provided her DNA.