CA - Genetic testing company "23andMe" possible bankruptcy concerns, October 2024

lightofmine99

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ARCHIVE (10/29/24)

It looks like discussions about this may have started in September but I didn't hear anything about it until today. I thought we should have a thread for this since 23andMe (I think) has played a significant role in solving unsolved crimes and identifying Does.
 
oh no!
23 and me is the reason we found my Dad's biological family (one of his brothers was still living)
Similar to me. I found my mother's biological family and a surviving brother who she never knew.
I better start doing a lot of screen captures on 23andMe relating to my DNA matches.
 
Similar to me. I found my mother's biological family and a surviving brother who she never knew.
I better start doing a lot of screen captures on 23andMe relating to my DNA matches.

thanks for the thought - I will have to tell my brother to do that - he's the one that arranged everything for my elderly Dad
 
My first thought is liquidation of asserts and DNA being sold off to the highest bidder.
What can of worms does this open up?
I'm not worried. But perhaps it's because I'm naive. And perhaps it's because I don't have any significant genetic disease and I'm 'older' and not relying on private health insurance anymore. I've already uploaded my DNA to Gedmatch, and consented to having my DNA used by LE for unsolved murders and unidentified remains. I'm comfortable with that. I also uploaded it to Family Tree DNA (another source used by LE) and MyHeritage. AND I did a DNA test at Ancestry. So my DNA is all over the place!

But each person must make their own decision.
No one should do a DNA test unless they are prepared for potential 'surprises'. You can't put the genie back into the box. I was ok with that. Humans are humans. They can make mistakes. You might find out that your parent is not your biological parent. Or you might find unexpected relatives. (Just like my mother's biological brother did. He was thrilled, by the way.)
And people should be aware that a company with your DNA can look into health traits. The only negative I see there is in the future could this be used 'against you' if you have a genetic marker for a disease and get denied insurance? That's not legal right now, but we can't possibly know what will happen in the future.

Lots of ethical questions here. I felt fine with my decisions but others might not.
 
 
I thought we should have a thread for this since 23andMe (I think) has played a significant role in solving unsolved crimes and identifying Does.
I'm not aware that 23andme is involved in crime solving or identification of UIDs. AFAIK only GEDmatch and Family Tree DNA allow their databases to be used for those purposes, and that is on an opt-in basis only.
 
And people should be aware that a company with your DNA can look into health traits. The only negative I see there is in the future could this be used 'against you' if you have a genetic marker for a disease and get denied insurance? That's not legal right now, but we can't possibly know what will happen in the future.

Lots of ethical questions here. I felt fine with my decisions but others might not.
I'd say it's not only a risk that 'genetic marker for a disease' could be used against the person who have done the DNA test, there is also a possibility that in the future it can be used towards all persons who are related to 'you', unless testing can clear them from carrying the genetic marker. It's not only health insurance that might be denied, maybe areas such as education, work, partners, having children could be affected.
 
Here's an article from the San Jose Mercury News that explains how to delete your data. It also says there's a law in California that forces 23andMe to delete all data upon request. (Not sure how much of what's in the article applies only to Californians):


23andMe bankruptcy announcement sparks data security concerns



Summarize
https://www.mercurynews.com/business/technology/

Privacy policy states user data may be sold or transferred in bankruptcy or sale​

Ryan MacaseroMarch 24, 2025 at 4:36 PM PDT
A sign is posted in front of the 23andMe headquarters on Feb. 01, 2024 in Sunnyvale, California. (Photo by Justin Sullivan/Getty Images)

A sign is posted in front of the 23andMe headquarters on Feb. 01, 2024 in Sunnyvale, California. (Photo by Justin Sullivan/Getty Images)
The bankruptcy filing of 23andMe, a South San Francisco company that stores the genetic information of at least 15 million customers, has raised substantial concerns about consumer data security.

According to the company’s U.S. privacy statement, if 23andMe is involved in a “bankruptcy, merger, acquisition, reorganization, or sale of assets, your Personal Information may be accessed, sold or transferred as part of that transaction and this Privacy Statement will apply to your Personal Information as transferred to the new entity.”

The statement also noted that the company “may disclose Personal Information about you to our corporate affiliates to help operate our services and our affiliates’ services.”

It’s the possibility of data transfer to parties consumers did not authorize, as outlined in the privacy statement, that lies at the heart of concerns over how that data could be shared.

On Friday, California Attorney General Rob Bonta issued a consumer alert, reminding customers they can delete data submitted to the struggling genetic testing firm. The “trove of sensitive consumer data” amassed by 23andMe is subject to deletion under both the Genetic Information Privacy Act and the California Consumer Protection Act, according to his office.

“California has robust privacy laws that allow consumers to take control and request that a company delete their genetic data,” Bonta said in a statement. “Given 23andMe’s reported financial distress, I remind Californians to consider invoking their rights and directing 23andMe to delete their data and destroy any samples of genetic material held by the company.”

Beyond the immediate concerns surrounding the data transfer policy, experts warn of the broader risks to genetic data.

“The issue is, if you are susceptible to some health risk — or to some lifestyle risk — then you may want to keep that private,” said Nat Natraj, a data security expert and CEO of Menlo Park-based AccuKnox. “People might choose to do this for a variety of reasons. If (the data) falls into the wrong hands, you could become essentially blackmail material.”

Natraj advised those who request deletion but want to keep their genetic data to store it in a digital “private vault” or other secure platforms.

“You can create a private vault, if with Google Docs, you can secure it with two-factor authentication or store it on your laptop with disk-level encryption,” he said. “If you want to be very, very safe, you can put it in a hardware wallet, such as a Yubikey.”

23andMe, once valued at $6 billion, has faced a turbulent year as it struggled to improve its financial health.

Earlier this year, the company cut 153 Bay Area jobs, including 122 in Sunnyvale and 31 at its headquarters in South San Francisco, representing 27% of its U.S. workforce.

According to a company filing last year, as of March 31, 2024, 23andMe employed 582 people worldwide, including 560 full-time U.S.-based employees.

Following the bankruptcy filing, CEO and founder Anne Wojcicki resigned from leadership but remained on the board.

State Sen. Josh Becker, a Menlo Park Democrat whose district includes South San Francisco, a major biotech hub in the region, said his immediate focus is to ensure “consumer privacy is protected and that no genetic information is improperly accessed as part of the bankruptcy proceeding.”

“We’re trying to publicize, make sure people know about their rights to delete,” Becker said.

The California Privacy Protection Agency is tasked with monitoring compliance with state data privacy laws for those concerned about whether the company is actually deleting data.

Becker, a former Silicon Valley executive, authored California’s “Delete Act” that goes into effect next year and could require data brokers to stop tracking individuals and delete any information collected about them.

“We want consumers to know that it’s your data and you have a right to it and delete your information whether it’s through a genetic information site or whether it’s one of 500 registered data brokers in California,” he said. “While there’s no reason to believe that data from 23andMe is at risk right now, we want people to be conscious of what data these companies have of you and know their rights.”

To delete their 23andMe account and personal information, customers can follow these steps:

— Log in to their 23andMe account on the company’s website.
— Navigate to the “settings” section of their profile.
— Scroll down to the “23andMe data” section at the bottom of the page.
— Click “view” next to “23andMe data.”
— Download their data.
— Scroll to the “delete data” section.
— Click “permanently delete data.”
— Confirm their request — an email from 23andMe will follow, containing a link to finalize the deletion.

On the website, customers can also direct the company to destroy stored saliva samples and DNA, as well as revoke permission for their genetic data to be used for research.
 
I am wondering-should I download my data? Is there a chance that we will lose access?
I doubt anyone can say what will happen, but I'd imagine that if anyone buys the company it is most likely to be one of the large healthcare or medical groups or a PE outfit and they would almost certainly be buying it for the data to sell on.

I don't think many 23andMe users realise that the main business of that particular company is acquiring DNA data specifically for sale in anonymised form to medical research companies such as GSK. It's the only one of the popular consumer DNA companies which is not focused on family history and genealogy. It's all a bit cheeky, really - they make money out of their users by charging them to analyse and process their data and then make money out of the data by selling it on.
 
I think it is important to understand that the company is in Chapter 11 bankruptcy. That is a reorganization, not liquidation. So the company will continue at least for now. But they many not even be allowed at this point to delete information if you request. Let see what happens. It is possible it could convert to a Chapter 7 liquidation and that would get interesting for sure.
 
I think it is important to understand that the company is in Chapter 11 bankruptcy. That is a reorganization, not liquidation. So the company will continue at least for now. But they many not even be allowed at this point to delete information if you request. Let see what happens. It is possible it could convert to a Chapter 7 liquidation and that would get interesting for sure.
As you say, this is a sort of breathing space but there has to be a question over which other entity, if any, will be willing to buy the company and/or its assets. I see that it has lost 99.7% of its share price, leaving it with a market cap of $48m, but is the data it holds, presumably its only significant asset, worth that much?
 
As you say, this is a sort of breathing space but there has to be a question over which other entity, if any, will be willing to buy the company and/or its assets. I see that it has lost 99.7% of its share price, leaving it with a market cap of $48m, but is the data it holds, presumably its only significant asset, worth that much?
It is a good question. It is worth what someone will pay for it. And I have NO idea what that would be. I assume the company has sold access to this data in some form previously. Did they just sell access to it? Unknown.
 
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It is a good question. It is worth what someone will pay for it. And I have NO idea what that would be. I assume the company has sold access to this data in some form previously. Did they just sell access to it? Unknown.
AFAIK, they created anonymised data sets from it and sold those sets to pharmaceutical companies for specific research projects. I'm fairly certain GSK is one of those. I suppose one way of looking at it is that the company has 15m customers and their market cap is currently $48m, which makes each customer's data worth slightly more than $3.
 
What are the fees that you pay when you go to these companies and how are they structured? For 23 and Me is apparently isn't enough. Do they do business differently than the others? or are we going to see the other entities following suit eventually?
 
What are the fees that you pay when you go to these companies and how are they structured? For 23 and Me is apparently isn't enough. Do they do business differently than the others? or are we going to see the other entities following suit eventually?
It depends on what sort of analysis they do.

Ancestry and MyHeritage only carry out autosomal analyses, which is the type most useful for standard family history. They provide an insight into ancestry on both parents' lines back for about 5 to 7 generations which means you can match with 4th to 6th cousins or thereabouts. I believe, but am not certain, that 23andMe falls into this category. I don't know what they charge but My Heritage usually has an offer for about £33 ( about $40)

Others such as Family Tree DNA, LivingDNA and a few others, also do that but in addition can also carry out mtDNA and/or Y-chromosome analyses for the female or male lines respectively. The costs here vary between companies and also depending on how wide an analysis you want. From memory, a full sequence mtDNA is around £150 whereas what is often described as the Big-Y (similar for the Y chromosome) can be up to £300.

Both types of companies can usually offer a health screen into conditions you are more or less likely than average to be susceptible to such as heart disease, Crohns, Type II diabetes etc. This may be for an extra cost as an add-on.

It may be that there are simply too many companies in the market at present, though as mentioned previously 23andMe was different from its competitors because of its focus on health matters. If 23andMe does disappear, it will take some competition out of the market but who knows if it will lead to increased business for other providers or whether the market is in effect saturated.
 
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Delawareonline (News Journal) March 25, 2025 article by Anitra Johnson entitled ‘23andMe's bankruptcy prompts Delaware AG to issue alert’:


In short, Delaware Attorney General Kathleen Jennings is suggesting that Delaware residents that used the online service delete their data.

IANAL and cannot attest to the process or ability to ensure any information of concern might be addressed by these measures. MOO
 

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