The Sordid Saga of 23andMe
The Sordid Saga of 23andMe
What's going to happen as they face bankruptcy?
Dear Readers,
Today I’m going to be talking about recent news that the direct-to-consumer DNA testing company 23andMe is facing bankruptcy and struggling to survive. Long-time readers of All Science know that I have a particularly personal connection to this company: I previously chronicled my multi-year journey into my heritage and genetic origins that began with 23andMe results on the collaborative literary Substack
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When it went public in 2021, it was valued at around $6 billion. However, since then, the stock price has plummeted, losing more than 97% of its value. So, what happened? How did 23andMe go from being one of the most promising startups of the early 2000s to a company facing significant public trust issues and evolving business priorities?
The story of 23andMe intersects with a number of topics I like to write about, including genomics, consumer lab testing, and health tech start-ups. We’ll discuss how they got into trouble, and what it might mean for your data with the company.
—Eric
A Meteoric Rise
23andMe was once hailed as the future of personalized medicine, offering customers the ability to unlock the secrets of their DNA with a simple saliva test. Founded in 2006 by Anne Wojcicki (the ex-wife of Google co-founder Sergey Brin), the company quickly became a household name, promising to revolutionize how we understand genetics and health. It wasn't just a tech company; 23andMe symbolized the fusion of Silicon Valley’s innovation with the promise of a medical breakthrough. Indeed, its early years were founded by millions in investment from Google and Silicon Valley venture capital firms.
At its core, 23andMe offered a simple value proposition: customers could learn more about their ancestry, discover relatives, and receive personalized health information. For $999, customers received detailed reports on their ethnic heritage, traits, and medical risks. While that seems like a lot of money now, you have to remember the Human Genome Project was only completed in 2003 and cost billions of dollars.
By 2013, advances in technology and higher volumes of testing dropped the price to $99, making genetic testing accessible to millions. This lower price point, coupled with media buzz and an intuitive user interface, led to a rapid growth in their customer base. Whether it was interest in ancestry or a desire for personalized health information, a ton of people (myself included) signed up.
Regulatory Battles and Scientific Skepticism
Unlike competitors like Ancestry.com and MyHeritage, 23andMe wasn’t just about discovering whether you were part Viking or Native American—it had grander visions. The company initially marketed itself as a health service, capable of providing valuable insights into a person’s risk for diseases like Parkinson’s, Alzheimer’s, or cancer. By analyzing genetic variants associated with diseases, 23andMe promised to democratize healthcare by giving individuals actionable medical insights.
When I first signed up, I was more interested in the health and science angle than the heritage part. My results showed that I had several genetic risk markers for macular degeneration, which is definitely a concern for pathologists who rely on their eyesight to do their job.
This excitement around 23andMe's health reports caught the attention of regulators. In 2013, the U.S. Food and Drug Administration (FDA) intervened, instructing the company to stop marketing its health-related genetic testing services. The FDA expressed concerns that 23andMe's tests were not scientifically validated and could lead to misinterpretation by consumers. The fear was that users might make drastic health decisions based on incorrect or incomplete information, such as undergoing unnecessary medical procedures (particularly when it came to cancer markers like BRCA1/2).
For 23andMe, this was a significant blow. Its primary value proposition—empowering consumers with health insights—was suddenly off the table. The company spent years working with the FDA to bring their tests into compliance. By 2017, 23andMe managed to regain FDA approval for some health-related reports, including tests for certain genetic conditions and predispositions, but the damage had already been done.
The Pivot to Drug Development
One of the biggest issues 23andMe faced was its business model: People only needed to submit the test once, and the price had dropped significantly. As the influx of people interested in DNA testing waned, they needed to find new sources of recurring revenue. Rival companies like Ancestry that focused on genealogy research were able to sell subscription services for access to rare historical records (this actually predated their DNA testing business). In 2018, 23andMe partnered with pharmaceutical giant GlaxoSmithKline (GSK) to use its vast database of genetic information to develop new drugs. As part of this pivot to pharmaceutical partner, the company went public via a SPAC in 2021, signaling its ambitions for growth beyond consumer testing.
This move was framed as a way to leverage genetic insights for the greater good. Earlier this year, 23andMe announced that they had initiated a Phase 1 clinical trial for an antibody target they discovered that could treat multiple forms of cancer. For me, contributing to this kind of discovery was a big part of the appeal—I opted in to sharing my genetic and survey data for research, and as of today my (anonymized) data went into at least seven published genetic studies.
While this pivot to pharmaceutical partner may have been necessary for the financial health of the company, it led to an identity crisis. 23andMe was no longer the disruptor it once was, promising to empower individuals with personalized health insights. Instead, it has become part of the pharmaceutical establishment, focusing on developing drugs based on aggregate genetic data.
Privacy Concerns and the Data Dilemma
As 23andMe shifted its focus from consumer health testing to ancestry services and partnerships with pharmaceutical companies, another issue began to loom large: privacy. Customers willingly sent in their genetic data, and many did so without fully understanding the long-term implications.
Though the company assured users that their data would only be used with consent, the very act of collecting such sensitive information brought up concerns about potential misuse, especially if the data were to fall into the wrong hands or be sold to third parties. This created an erosion of trust, and many customers started to view 23andMe with skepticism.
The concerns over data privacy weren’t theoretical either. Genetic information is not just personal—it’s familial. Information about your DNA can inadvertently reveal data about your relatives, even if they’ve never consented to the testing. Additionally, law enforcement agencies have increasingly turned to genetic databases to solve crimes, using data from services like 23andMe and other companies to track down suspects through familial matches. While this has helped solve cold cases (most notoriously the Golden State Killer), it raises ethical questions about the limits of privacy and the unintended consequences of mass genetic testing.
The End of 23andMe?
The final blow came in 2023 when 23andMe suffered a large data breach and some customer information ended up for sale on the dark web. The troubled company recently settled a class action lawsuit related to the hack for $30 million in September 2024.
Following that settlement, as the company was in dire financial straits, CEO Wojcicki mentioned “considering third-party takeover proposals.” This greatly unsettled the market and her board, so she quickly walked back that statement and said that she was merely considering taking 23andMe private. However, the damage was already done, and the entire board of directors resigned. The whole saga reminds me of the board mutiny at the equally controversial tech company OpenAI that began with the short-lived firing of CEO Sam Altman (they specifically called out his “lack of candor”) and has continued to this day with loss of senior leadership.
So, what does this mean for you today if you have used 23andMe’s services in the past? Fortunately, the 2008 Genetic Information Nondiscrimination Act (GINA) prevents denying health insurance or employment to anyone on the basis of of genetic test results. For other privacy concerns, the specific type of DNA testing 23andMe uses (single nucleotide polymorphism arrays, or SNPs) is a lot less informative—and therefore less dangerous if it fell into the wrong hands—than whole genome or exome sequencing or other types of DNA testing.
However, some cybersecurity experts suggest people who are concerned restrict or delete their data from 23andMe, especially if the company folds and the records are sold to the highest bidder. You can completely delete your data by logging in to your 23andMe account and going to Settings > Account Information > Delete Your Account, although their terms state they will retain a few pieces of anonymized data (raw DNA results, gender, and date of birth) for legal compliance reasons. Alternatively, if you don’t want to go that far, you can revoke consent for specific items like sample storage, sharing data for research, relationship matches, etc. If you decide to go the full deletion route, I recommend downloading all of your relevant reports and raw data before they are gone forever.
(Out of an abundance of caution, I am taking these steps above)
Conclusion
The nearly 20-year story of 23andMe is a mix of scientific innovation and a cautionary tale. It succeeded in popularizing genetic testing and bringing DNA into mainstream conversation, but it also exposed the limitations and ethical questions of personal genomics. As the company pivots toward drug development, it leaves behind a mixed legacy—one that includes both groundbreaking contributions to science and troubling questions about data privacy, medical ethics, and the true value of genetic insights.
At this time, whether 23andMe can survive long enough to become profitable and regain the public trust remains to be seen. It may yet carve out a successful niche in biotech, but its early promise of democratizing healthcare has been tempered by the realities of science, regulation, and the complexities of human genetics. For consumers, the lesson is clear: while we may hold the keys to our genetic code, the interpretation—and the implications—are far more complicated than we once believed.