Would you consent to your DNA data being shared with other companies? The rise and fall of 23andMe...

[chasy]

I have thought about this with regards to electric cars - one of the issues buying one from an upstart brand is that you're making a pretty big bet on the manufacturer's existence. I recall Fiskars looked slick, were fast and expensive. Pretty sure Fiskar is bankrupt. So good luck if you bought their car.

I never did 23 and Me, but if I had, I don't think I would have considered the scenario where they go bankrupt. I'm sure most people signed up curious to know some basic facts about their ancestry / genetics. The curve ball now is, 23 and Me is bankrupt and will need to monetize their assets and restructure their debt. Likely their biggest asset is this DNA database. Not sure I'd be thrilled to know the seemingly harmless company that has my DNA data is now likely to sell it off to the highest bidder!

[BrightonCorgi]

On 3/25/2025 at 5:59 AM, chasy said:

Likely their biggest asset is this DNA database. Not sure I'd be thrilled to know the seemingly harmless company that has my DNA data is now likely to sell it off to the highest bidder!

Threat actors have already developed targeted viruses based on specific DNA profiles. Having a worldwide database such as 23andMe allows for further refinement. 

Future depopulation efforts can much better target groups deemed not worthy of further procreation. 

[Namisgr11]

On 3/25/2025 at 5:59 AM, chasy said:

I have thought about this with regards to electric cars - one of the issues buying one from an upstart brand is that you're making a pretty big bet on the manufacturer's existence. I recall Fiskars looked slick, were fast and expensive. Pretty sure Fiskar is bankrupt. So good luck if you bought their car.

I never did 23 and Me, but if I had, I don't think I would have considered the scenario where they go bankrupt. I'm sure most people signed up curious to know some basic facts about their ancestry / genetics. The curve ball now is, 23 and Me is bankrupt and will need to monetize their assets and restructure their debt. Likely their biggest asset is this DNA database. Not sure I'd be thrilled to know the seemingly harmless company that has my DNA data is now likely to sell it off to the highest bidder!

They have a lot less DNA data on you than you think. They detect and collect data on DNA polymorphisms, naturally occurring variations found within particular genes.  They don't generate sequence data.

[chasy]

8 minutes ago, Namisgr11 said:

They have a lot less DNA data on you than you think.

Maybe - interestingly I've seen like 3 or 4 different articles come out following the bankruptcy news highlighting how 23 and Me customers are being encouraged to delete their information. I think even a CA congressman is leading the charge. I agree that 23 and Me likely doesn't have that much information, I was highlighting more of the unforeseen risk of taking a seemingly harmless DNA test if that company goes bankrupt. Also, I'd bet that the DNA data they have isn't that valuable, otherwise they would have been able to better monetize the original business model.

[Namisgr11]

For ancestry analyses, they evaluate naturally occurring variations in particular genes in which distinct variations are known to occur more frequently in certain regionally defined populations than others. They do this using a genotyping method based on what are called SNPs, or single nucleotide polymorphisms.

This type of genotyping analysis is also commonly used to evaluate known risk factors for contracting certain diseases. To establish a particular variant as a disease risk factor, the scientific community has already evaluated thousands of individuals. A quick example, the apoliprotein E gene, which in humans comes in 3 flavors, epsilon 2,3, or 4. 3 is most common in the population, but if someone has one copy of 4, they're at higher risk of cardiovascular disease and Alzheimer's disease. Two copies of 4, even higher risk, 10-fold for Alzheimers. 23andMe can determine what flavor your two apoE genes are.

So it's the case that at the database level the information collected by 23andMe isn't very useful. They don't do any DNA sequencing.

[BrightonCorgi]

14 minutes ago, chasy said:

Maybe - interestingly I've seen like 3 or 4 different articles come out following the bankruptcy news highlighting how 23 and Me customers are being encouraged to delete their information. I think even a CA congressman is leading the charge. I agree that 23 and Me likely doesn't have that much information, I was highlighting more of the unforeseen risk of taking a seemingly harmless DNA test if that company goes bankrupt. Also, I'd bet that the DNA data they have isn't that valuable, otherwise they would have been able to better monetize the original business model.

Between the meta data and machine learning; there's a lot to be gained.

[Namisgr11]

Not sure there is beyond what's already publicly available and used extensively as a basis for hundreds of research studies on particular diseases and other problems in biology. 23andMe uses SNP libraries and technologies that are in the public domain, and so accessed for up to two decades already by basic and applied researchers all. There's much more information already in the public domain, for instance from the work of deCODE Genetics, a company founded and based in Iceland that has already performed not just SNP but partial gene sequencing analyses of over 200,000 Icelanders - a number of their studies are in the refereed and published scientific literature already.

There's most definitely a reason why no company has been willing to step forward and offer the money to keep 23andMe afloat, and it's that their database is not of high value.

[BrightonCorgi]

Looks like 23andMe has been selling off user data for some time

[tbelle7]

IMO - the less personal data of any kind you make available, the better off you will be.

[Hammer Smokin']

On 3/26/2025 at 5:15 AM, Namisgr11 said:

Not sure there is beyond what's already publicly available and used extensively as a basis for hundreds of research studies on particular diseases and other problems in biology. 23andMe uses SNP libraries and technologies that are in the public domain, and so accessed for up to two decades already by basic and applied researchers all. There's much more information already in the public domain, for instance from the work of deCODE Genetics, a company founded and based in Iceland that has already performed not just SNP but partial gene sequencing analyses of over 200,000 Icelanders - a number of their studies are in the refereed and published scientific literature already.

There's most definitely a reason why no company has been willing to step forward and offer the money to keep 23andMe afloat, and it's that their database is not of high value.

Reasonable takes in a sea of garbage. Rare in today's internet age. 

[Namisgr11]

18 hours ago, tbelle7 said:

IMO - the less personal data of any kind you make available, the better off you will be.

How about if it's none, at least for Americans?  

Under the US Bankruptcy Code, companies declaring bankruptcy cannot sell personally identifiable information about a consumer unless the sale conforms to the firm’s privacy policies or until after an ombudsman is appointed.

Note that 23andMe privacy policies do not allow them to sell information that is not de-identified, and so an ombudsman would have to be brought in to decide whether the company planned to sell identifiable information and what to do about it if they did.  And that decision would be virtually certain to be that the company would not be allowed to sell personally identifiable information, since doing so would violate the Health Insurance Portability and Accountability Act of 1996.

https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html