When 23andMe was founded in 2006, it was the first company to offer at-home DNA testing and interpretive results. As it started raising venture capital and picking up in popularity, concerns were raised about data privacy. In 2013, the FDA temporarily ordered them to stop selling their testing kits while they did a regulatory review. In 2023, there was a data breach involving almost seven million users’ data. But, for most people, myself included, the allure of knowing more specific details about your heritage was irresistible. I finally talked a hesitant Mr. Rosie into doing it with me in 2017. To date, more than 15 million people have used the service. Once the company went public in 2021, it stopped being profitable. After a series of financial problems, company wide layoffs, and dramatic events that included the entire board resigning last fall, 23andMe filed for Chapter 11 bankruptcy on Sunday night.
Gene testing firm 23andMe said on Sunday it had filed for Chapter 11 bankruptcy protection in order to facilitate its sale, after years of struggling to find a sustainable business model. In a statement announcing the bankruptcy, the firm said its CEO, Anne Wojcicki, had resigned effective immediately. She will remain on the company’s board of directors.
“After a thorough evaluation of strategic alternatives, we have determined that a court-supervised sale process is the best path forward to maximize the value of the business,” Mark Jensen, chair and member of the Special Committee of the board of directors, said in the statement.
Late last year, the company said it was cutting about 40% of its workforce – around 200 employees – and discontinuing further development of all its therapies as part of a restructuring program, according to Reuters. In September, all seven of the company’s independent directors resigned en masse, citing their frustration with the CEO’s “strategic direction” and efforts to take 23andMe private. The company, which went public in 2021, had never made a profit. The stock shot up following the listing, briefly valuing the company at $6 billion. Wojcicki, who owned 49% of the company, became a billionaire.
Its core product, an at-home DNA testing kit, offers “personalized genetic insights” that the company says can flag potential health risks such as one’s likelihood of developing Alzheimers or certain cancers. 23andMe tried to convert one-time buyers into subscribers with the promise of continued feedback and personalized wellness plans but had reportedly fallen short of its goals.
Since the company will eventually be sold off via bankruptcy court, there are a lot of concerns about whether or not its customers’ genetic data will be safe. There is good reason to be concerned. According to TechCrunch, 23andMe is not beholden to HIPAA laws. Instead, it follows its own privacy policies, which can be changed at the company’s discretion. 23andMe’s current policy states, “If we are 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…” This means that users are at the mercy of whoever ends up buying the company’s intentions. The good news is that you can download and delete your genetic data from 23andMe’s database. WaPo has compiled an easy step-by-step guide on how to delete your personal info.
How to delete genetic data from 23andMe:
1. Log into your 23andMe account.
2. Go to your Profile, then tap Settings.
3. Scroll to the “23andMe Data” section at the bottom of the page and click View.
4. If you want to download your data, select what you want.
5. Scroll to the “Delete Data” section and click Permanently Delete Data.
6. Confirm your request: You’ll receive an email from 23andMe, and click the link in the email to confirm.
My husband and I both just used this guide to delete our genetic data. I genuinely liked learning more about my heritage. One-half of my family tree was basically unknown and so many blanks were filled in. I also learned that I don’t have an increased risk of Alzheimer’s or breast cancer, which was a relief because both run on one side of my family and I had no idea about the other side. I never bothered with their additional surveys or anything like that because I got exactly what I wanted out of it. It truly sucks that our data is a hot commodity that’s worth billions of dollars to big companies. Greed ruins everything.
Photos credit: Xavier Collin/Image Press Agency/Avalon, Jeffrey Mayer/Avalon
I’m thankful for using their service, because it helped me get diagnosed with Celiac Disease (it showed I was a slightly increased risk due to having one of the known genes for it), but my husband was always concerned about this outcome.
One note about deleting your data: double-check to ensure you didn’t ask them to save any samples you sent. I’d had that box checked on my account, and had I deleted my data and not that, they still would have had my genetic material.
in addition to being heading the company originally associated with Dr. Henry Louis Gates’s PBS series FINDING YOUR ROOTS, Anne Wojcicki has been one of the credited supporters/underwriters of that program on PBS. I wonder what the bankruptcy will do to the way genetic testing is handled on the show.
It is clear that there are other major corporate underwriters, but Gates and his father had their entire genome sequenced by 23 and Me and Harvard has backed research initiatives conducted by Wojcicki’s company.
Of course, the current state of the NIH doesn’t make the prospects brighter for improving the company’s financial footing and data breaches are still making headlines (although not typically in the same league as discussing military intelligence secrets on unsecured channels with zero confidence that national security is being protected).
I just read that even if you never use these sites – your DNA is out there one way or another. Because so many people have used them that through family connection, you’re on there, whether you want to be or not.
That’s how the Golden State killer was found. And while we rightfully celebrate that outcome, it also means exactly what you just said.
exactly. I never used 23 and me but members of my family did, so my dna is out there already.
This part of it all upsets me so much. And if any of them don’t follow that guide, my DNA is about to get sold to some venture capitalist, without my consent or having ever done anything to put it in their hands.
I’d say you’re right if one lives in the UK or USA. None of my relatives in Italy ever did that and I always avoided doing it even out of curiosity because I didn’t trust them to keep my DNA data safe long-term.
I was so afraid of my data being out there, I never signed up. I’m glad everyone is able to delete their data.
Something tells me (corporations being notoriously evil) that a few simple clicks on their website doesn’t delete your DNA. They have that info and they won’t let go of it. Where is the proof your info is permanently deleted with them?
agreed, they still have your data, deleting your account will not protect you.
What are the risks of your data being sold and “used”? How could it impact an individual?
Profiling (genetic risk of disease, addiction, risk taking behavior) that will impact an individual’s access, affordability of :
-Medical insurance
-Other insurance
-Employment at certain jobs
-Housing
-Credit
Basically, redlining for the modern age
Also given the current US political environment: arrest, incarceration/ deportation of individuals deemed to be associated with undesirables due to their family tree. No crimes committed other than being related to someone or with heritage from the “wrong” countries/ethnicities. People are currently being deported because they have a tattoo of a Spanish soccer club that an ignorant person thought was a gang sign … they are looking for any pretext to rain trouble down on brown people or people who push back on them … genetic info is just one more pretext for them.
And also, not far down the line in Project2025 Christofacist America human rights repercussions for someone born outside of wedlock, married to someone of the same gender, with a child they’ve had out of wedlock, or a woman presumed to never have had a biological child of their own (Vance and his horrible opinions of childless woman and how they should not have access to certain positions, like POTUS)
Actually, they can’t do those things under US law. Look up the Genetic Information non-discrimination act.
guess who is going to buy this (or try at least)…El*n M*sk, and guess what hes going to do with your genetic data?…likely sell it to insurance companies to help give them reasons to say “no” to anything you file a claim for…
yikes.
The only reason I never did this test. They spent too much money on being “cool”. One day being cashed strapped was bound to happen. I didn’t trust them to delete my sample. they also wouldn’t allow anyone to be anonymous. That was suspicious too me. I still wish I could anonymously have a dna map.
I thought “delete data” means it’s deleted from your server but not theirs.
Rosie, and others – 23andMe doesn’t test for all known genetic mutations. Rosie, you specifically mentioned breast cancer. Breast cancer runs on my mom’s side of the family and my cousin got genetic testing done (she was pre menopausal when she got breast cancer), wondering if she had BRCA, and discovered she has a mutation called Lynch Syndrome, PMS2. I have it as well. With the exception of my mom, every woman in my family over the age of 45 has gotten breast cancer at some point. 23andMe doesn’t test for it. My report merely said I had a higher risk for macular degeneration. Nothing about my increased risk of colon, endometrial, ovarian, uterine, or breast cancer. So don’t assume the 23andMe reports accurately screen for everything. Go to a geneticist and get tested. It significantly helps with getting certain diagnostic tests paid for.
Do they have the samples, or the genetic information?
Just because they don’t sell consumers certain info (ie they tell consumers that info isn’t provided in the reports consumers receive) doesn’t necessarily mean the data isn’t there in their systems.
They have some of the samples. It depends on whether a person consented to have their sample quote bio-banked for further research. Apparently one needs to contact customer service to get the sample destroyed. There is no button on the website to request that. Also, some of the data can take days to be ready for download, so don’t wait too long to download data before deleting.
@Luna, That’s not true. I was able to change the setting in my profile on their website, requesting that they no longer bank my sample. I was deleting my data last night and found that before I found the section on deleting my data.
I’d like to echo your comment. 23andMe testing is insufficient to rule out increased breast & other cancer risk. One needs to get medical genetic testing for that.
We did 23 and Ancestry and with both we used fake names, burner emails, and paid with a friend’s credit card. Also we deleted our data the minute the 23 bankruptcy rumors started. Friends and family called us paranoid but now they get it.
You must have luck in and did this very early. I wanted a kit but they had a way to link addresses. They closed the anonymous loop hole. I will look into ancestry again.
I don’t understand why ancestry couldn’t buy them out and keep the data. I know I don’t understand anti-trust laws and always wondered about a company having your DNA as being quite scary but I don’t know how this has been allowed t happen by governments when it comes to the most personal data
A dubious scam from the beginning and people fell for it like lemmings.
Millions will NOT delete their data and that will be a wonderful acquisition for pharmaceutical or insurance companies.