'Cops, AI, drug companies': Who wants to buy your DNA from 23andme?
This tiny DNA sample can be used to generate a host of comprehensive reports on a person's ancestry, genetic health risks, and even how they process certain medications. Earlier this week, 23andMe announced it would be filing for Chapter 11 bankruptcy proceedings, which would involve the sale of those consumers' most sensitive biological data to the highest bidder.
This raises a monumental question: who wants to buy your DNA, and why?
If you were hoping that 23andMe would be ushering in a long line of buyers who would like to use the data to finally cure cancer, buckle up. The companies and agencies that are most likely to be interested in 23andMe's data represents a laundry list of cops, AI startups and pharmaceutical companies. And because DNA and collected by genetic testing companies isn't protected under the Health Insurance Portability and Accountability Act (HIPAA) — the privacy laws that set robust standards for providers' and insurers' handling of medical data — users' sensitive genetic information is at risk to be weaponized for any number of nefarious ends, too.
'The data could be conceivably used and repurposed for a number of consumer targeting efforts — from marketing and advertising to blackmail,' Rennie Westcott, senior intelligence analyst at Blackbird.AI, told Salon in an email.
Darren Williams, an expert in data privacy and the founder of the antivirus software BlackFog, told Salon in an email that 23andMe's genetic data could potentially be used 'for identity theft or other malicious purposes, potentially for years.'
As mentioned, 23andMe customers first pay for the service online, then send the company a swab of their saliva. In addition to customers' genetic information, 23andMe is also in possession of other highly sensitive data, 'extensive questionnaires and additional metadata about individuals,' Erika Gray, co-founder and chief medical officer of Toolbox Genomics, told Salon.
'While common genetic industry practices, and 23andMe, do keep their raw data de-identified, there is a risk that de-identified data could be re-identified with the correct inputs, and especially with 23andMe's extensive questionnaire and 'find your relative' feature,' Gray said.
Law enforcement agencies 'all the way from local to state to federal government' could be 'very interested' in 23andMe's trove of genetic information, Adanté Pointer, a civil rights attorney in Oakland, told Salon. 'Being able to get access to 23andMe gives them a bigger database of genetic information than they currently have in order to match a potential suspect, victim or even a witness to a particular incident they're investigating,' Pointer explained.
Those who sent their genetic samples to 23andMe 'may have waived the right to assert that constitutional interest in the database or the sample,' Pointer said, and the company's lengthy, 'often overlooked' private waivers may have also waived individuals' rights.'I'd imagine that in the consent form, there is language allowing 23andMe, its subsidiaries, spin-off companies, or even a company that purchases 23andMe's assets (including the DNA database), to use that data as they see fit,' Pointer added.
Pointer is no stranger to law enforcement's use of genetic information from other sources. In 2022, he represented a woman whose DNA she provided in a rape kit that was later used to arrest her six years later for retail theft. The plaintiff, identified as Jane Doe, said that before providing a DNA sample to the San Francisco Police Department, authorities assured her that her DNA would be used 'only to investigate her sexual assault.' The case ultimately settled out of court, with Doe being paid around $200,000 by the city, Pointer told Salon.
Customers' genetic data could also be attractive to the companies that serve law enforcement agencies — which have a 'ready-built customer base' of agencies already equipped to process genetic information, Pointer said.
Law enforcement agencies have long shown interest in the company's DNA stock. 23andMe received 15 requests from law enforcement between 2015 and 2024, denying all of them. That policy may change, depending on who buys that data from 23andMe's going-out-of-business sale.
Outside the law enforcement, AI companies could use the genetic information to train their data sets. 'Cybercriminals are already using generative AI to automate attacks, and large genetic datasets like this offer a new frontier,' Pete Nicoletti, a cybersecurity expert and member of the FBI and Secret Service Cybersecurity Task Force, told Salon in an email.
Pharmaceutical companies and precision medicine companies could also use the data to develop new drugs. It wouldn't be the first time 23andMe user data had been used by drugmakers: in 2018, the pharma giant GlaxoSmithKline bought a $300 million stake in 23andMe, in exchange for the ability to 'mine its genetic database for new therapies.'
Another genetic testing company could also be interested – though it's unlikely, given that consumer demand has waned for DNA kits since around the height of the pandemic, in 2021. It makes some sense: those who have their data analyzed really only need the service once, meaning there is a finite number of people likely to become customers.
'This data is probably of most immediate value to drug developers and manufacturers, and therefore pharma is a likely landing spot,' Westcott said. It's a nerve-wracking moment for 23andMe consumers. And in large part, such a data sale wouldn't represent anything new for the private market or regulators.
'This is not new in practice — user data is bought and sold constantly without any notification to the user,' Westcott explained. In 2020, the private equity giant Blackstone paid $4 billion for Ancestry.com — just one high-profile, public example.
But given that 23andMe itself would be acquired in bankruptcy proceedings, 'the sale of genetic data is somewhat untested and unaccounted for territory from a legal perspective, and the sale of consumer data in the U.S. has historically faced fewer regulatory roadblocks,' Westcott said.
In that sense, this moment also represents a chance to establish a precedent of strong consumer protections around packaged sales of sensitive biological data.
'Governments and regulators must step in now — with clear protocols, independent oversight, and enforceable safeguards — before any data changes hands,' Nicoletti said. 'Once this kind of information is leaked, it's out there forever.
It's not much comfort to ponder which of these buyers might eventually come into possession of approximately 4.4% of Americans' genetic information — and, by proxy, their relatives' genetic information too. Many guides exist informing customers how to delete their data from 23AndMe before the company is sold (here's the handiest guide I found on how to purge your genetic info from its database.) But even for customers who do everything they can to protect themselves, they're still vulnerable.
'While consumers may hope the genetic material is deleted and not retained by 23andMe, that would be naïve,' Pointer warned. 'Once information enters a database and is shared across servers or affiliates, it may exist in multiple locations.'
In Utah, Gray and her mother were among the many users that opted into the data being used for 'research purposes,' she said. 'Unfortunately, for individuals such as myself and my family, the way the research contribution was portrayed is that it would benefit society as a whole,' she said. For users who chose to opt into research, the company was given permission to 'analyze our de-identified data and possibly sell it to third parties,' Gray said.
In a message to customers, 23andMe said its leadership would approach the sale process and 'look to secure a partner who shares in its commitment to customer data privacy and will further its mission of helping people access, understand and benefit from the human genome.'
That doesn't mean much, Westcott said. '23&Me has publicly committed to finding a buyer that shares an interest in protecting customer data privacy, but this is just a statement and doesn't bind the potential buyer in any way,' she said. A spokesperson for 23andMe wouldn't comment to NPR on what the company might do with its data beyond 'general pronouncements about its commitment to privacy.'
Stunningly, the company is still operating as normal — and still welcoming you to hand over your personal data. '23andMe is still open for business,' it said in an open letter to customers.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
USA Today
23 minutes ago
- USA Today
The Daily Money: Can an ideal partner earn five figures?
Good morning! It's Daniel de Visé with your Daily Money. The median U.S. salary is about $62,192, but Americans expect their ideal partner to earn six figures. That's the takeaway from a new survey. Many of us don't understand Social Security American workers pay taxes into a Social Security 'trust fund.' The more you earn now, the more you will reap later in retirement benefits. You can monitor your progress in a government account called 'my Social Security.' Those facts might lead some people to believe that everyone has a personal Social Security fund, money earmarked just for them. Is that true? 📰 More stories you shouldn't miss 📰 📰 A great read 📰 Finally, here's a popular story from earlier this year that you may have missed. Read it! Share it! A survey of wealthy Americans by Charles Schwab reveals a fascinating generational divide over how, and when, they leave money to their heirs. Millennials and Generation Xers want to transfer wealth to the next generation during their lifetime, the survey found. Baby boomers prefer to wait until they are dead. About The Daily Money Each weekday, The Daily Money delivers the best consumer and financial news from USA TODAY, breaking down complex events, providing the TLDR version, and explaining how everything from Fed rate changes to bankruptcies impacts you. Daniel de Visé covers personal finance for USA Today.
New York Post
23 minutes ago
- New York Post
You can cut your risk of dementia by 61% by doing this — but you have to start before age 70
Listen up — your brain health might depend on it. New research suggests that a single device can dramatically reduce your dementia risk, but only if you get one before the age of 70. The findings come as dementia diagnoses are on the rise nationwide, with the number of Americans affected by the memory-robbing disease expected to double by 2060. Advertisement 3 Studies suggest that one in 10 older Americans currently have dementia. fizkes – The device that can make a difference? A simple hearing aid. Researchers looked at 2,953 adults from the long-running Framingham Heart Study, which has tracked heart and brain health in thousands of people since the 1940s. At the start, they were 60 or older and dementia-free. Each took hearing tests between 1977 and 1998, and scientists followed them for up to 20 years to see who developed dementia. Advertisement Over the follow-up period, 583 people — about 20% — developed dementia. The biggest brain boost was seen in people who started wearing hearing aids in their 60s. They had a whopping 61% lower risk of dementia compared to those with hearing loss who never used the devices. People in their 60s with normal hearing also had a 29% lower risk than those with untreated hearing loss. Advertisement But once participants hit age 70, hearing aids didn't offer much protection. 'Managing hearing loss during midlife — improving hearing with the use of a hearing aid — could help protect the brain and reduce risk of dementia,' Dr. Sudha Seshadri, a behavioral neurologist and co-author of the study, told MedPage Today. Hearing loss and the link to memory The new study adds to a growing body of evidence that hearing aids may also lend a hand to your brain. 3 Hearing aids are electronic devices that amplify sounds for people with hearing loss – Advertisement In one 2023 study, hearing aids cut cognitive decline by nearly 50% over three years in adults aged 70 to 84 who were already at high risk for dementia. They also saw major improvements in communication. Scientists are still digging into exactly why hearing aids seem to help, but a few theories are already making noise. When hearing fades, your brain works harder to fill in the blanks. That constant mental strain can take a toll on memory and thinking ability, according to UCLA Health. Hearing loss has also been shown to speed up brain shrinkage with age, a process already linked to cognitive decline. Social isolation may play a role, too. Older adults with hearing loss tend to withdraw from conversations and social settings, which means less mental stimulation — another potential dementia risk factor. Experts say the link between hearing loss and dementia could be a golden opportunity for early intervention. 3 Over-the-counter hearing aids became available in the US in October 2022. ManuPadilla – Advertisement Making hearing aids more accessible Hearing loss is the third most common chronic condition in the US, behind arthritis and heart disease. Nearly 27 million Americans over 50 are affected, but just one in seven use a hearing aid, according to Johns Hopkins. Even among those who do, the average user waits about 10 years before seeking help. During that time, communication breaks down, relationships suffer, and the risks of depression, isolation and cognitive decline climb. But things might be shifting. In 2022, the FDA approved a new category of over-the-counter hearing aids, allowing Americans with mild to moderate hearing loss to buy them directly in stores or online — no prescription, no audiologist required. Advertisement The move was aimed at making hearing care cheaper and easier to access, tackling two of the biggest reasons millions avoid getting help. Now, it may be good news for the brain too. A January study found Americans over 55 face a 42% lifetime risk of developing dementia, with new cases expected to reach one million per year by 2060 without major intervention. That's a wide reaching problem, as dementia's impact extends beyond memory loss. The disease increases the risk of a range of physical and mental health issues, including infections, falls, cardiovascular problems, malnutrition and depression.
Axios
23 minutes ago
- Axios
Chamath Palihapitiya returns to the SPAC game
The SPAC King is back, crown dented but confidence unbowed. Driving the news: Venture capitalist and podcaster Chamath Palihapitiya has filed to raise $250 million for a new blank-check company called American Exceptionalism Acquisition A. It aims to acquire a company in one of several industries, including energy production or decentralized finance, although SPACs often settle on targets way outside their original purviews. Why it matters: Palihapitiya for several years was the SPAC market's most active and visible sponsor, raising over $6.3 billion in IPOs for 10 of them and buying six companies. He also became a lightening rod for SPAC critics, as all but one of those companies now trade below $4 per share. The exception is SoFi, which closed yesterday at $22.75 per share. Palihapitiya also was involved in PIPEs for several other SPAC mergers — including for Desktop Metal, which later was acquired at a steep discount and recently filed for Chapter 11 bankruptcy protection. Catch up quick: Palihapitiya in 2022 seemed to sour on SPACs, winding down a pair of tech-focused ones after failing to find adequate merger targets. In short, he argued that such companies had failed to adequately reset valuation expectations to a post-ZIRP world. He kept a pair of biotech-focused SPACs open, but those never consummated deals either and eventually shut down. Fast forward: Palihapitiya seems to believe that valuations have finally begun to take their Adderall, and there's some new data backing him up (both in terms of private round valuations and IPO prices vs. last private marks). In the new SPAC prospectus, he also cites a belief that "the biggest gains in the future will come from companies that are involved in fixing the fundamental risks that come from our interconnected global order while reinforcing American exceptionalism." The former Democrat has taken a Trumpy turn, and perhaps wants to return to an asset class where Trump and his wons have increasngly dabbled. Or perhaps he's banking on talk that the SEC will relax Biden-era SPAC oversight. Yes, but: Palihapitiya gives a nod to his past performance problems, bolding a section about improved investor alignment. The new SPAC includes no warrants and a larger-than-normal sponsor promote, although his shares only vest if the post-merger company trades at a 50% premium to the IPO price (i.e., $15 or more). He also notes that this sort of offering is more appropriate for institutions than retail investors, and that any participants should go in with the understanding that there's "no crying in the casino."
