Why I Regret Using 23andMe: I Gave Up My DNA Only to Find Out I’m British | technology

23andMe is on the verge of implosion. As the once-promising genetic testing company flounders — losing 98% of its $6 billion valuation, all of its independent board members and nearly half of its workforce — many of its 15 million customers are scrambling to get their DNA data out to delete the company’s archives. I am one of them.

My hesitant journey to 23andMe began in 2016 when I ordered a kit in the mail. After leaving the box on my desk for weeks, I finally spat into a tube and sent it to the company for analysis. I’m a technology journalist and I like to think that I think carefully about what data I share with companies. I was particularly wary of genetic data, which, unlike a password or credit card number, can never be changed.

My father’s family makes a point of tracing our ancestry, and there are records that give the exact name of the small village in Ireland where our ancestors came from. My mother’s side is less thorough. Although I know that my grandmother’s great-grandparents came to the United States from Denmark and barely spoke English most of their lives, I have no idea what country our last name Galusha comes from. I wanted to know more. Despite my concerns – and there were many – my curiosity got the better of me and I sent in a test.

What did I get in return for giving the company $119 and perpetual access to my genetic data? Confirmation that I am 63% British and Irish, 17% Danish and otherwise “largely northwest European.” I felt a resounding ambivalence about the results, including a certain disappointment that I had not discovered a newfound heritage—information that would add a new dimension to my identity. I was also surprised to find out that some parts of my identity present in family history – a Czech heritage – were not actually present in my genes. Now, as the company’s impending collapse raises serious concerns about what will happen to the database containing users’ genomic information, I’m having a hard time reconciling the fact that I gave up my genetic privacy to find out that I am primarily British.

Timothy Caulfield, a professor at the University of Alberta who has studied the motivations for conducting genetic ancestry tests and consumers’ reactions to their results, said my reaction – one of ambivalence – is actually the most common.

“Pop culture tells us to care — that your genes matter,” he said. “But a lot of people get their results and find them very disappointing.”

In addition to finding my results inconsequential, I have always found the idea of ​​genetic ancestry testing difficult and was hesitant to embrace the idea that my genetic heritage has any bearing on who I am as a person. Caulfield, who had his own ancestry tested despite similar concerns, is of the same opinion. He claims that race is “a biological fiction,” one that these companies promote by promoting the idea that our genes are relevant to how we see ourselves as individuals. This mindset, says Caulfield, is “the essence of racism.”

“On the one hand, I’m angry about it – I think it’s an incredibly damaging trend, especially in this polarized world we live in, where we’re becoming more and more tribalistic,” he said. “But at the same time I understand it. People are looking for roots. They are looking for meaning. They are looking for a tribe to belong to. And I think the marketing plays to that idea.”

This marketing was extremely successful for almost two decades. 23andMe was co-founded by Anne Wojcicki in 2006. When the company went public in 2021, it was worth $3.5 billion and reached a peak of $6 billion shortly after. Competitors such as Ancestry.com and MyHeritage entered the sphere, and by 2024, more than 40 million people in the world had taken consumer genetic testing.

The individual appeal of these tests varies widely, but many consumers explicitly express a desire to understand the personal origins that shape their identities, said Muriel Leuenberger, a postdoctoral researcher at the University of Zurich whose work focuses on identity philosophy and genealogy.

“One hope I see in people taking these tests is to develop a better understanding of themselves,” she said. “You have the thought that you’re given this information, and then suddenly things that you’ve done in the past or character traits that you have might come together and make sense in a different way that they didn’t before have done.”

For many people, these tests can redefine a sense of identity, for better or worse. Many have told stories about a genetic test disproving long-standing family traditions – such as a long-quoted story about negating Native American roots. I had always heard that my family was Czech – a heritage that didn’t show up as a percentage in my results. This identity wasn’t part of my upbringing, aside from passing references, so discovering that it didn’t exist had a huge impact on me. However, similar discoveries can lead to existential crises for those who have closely aligned themselves with a particular identity, Leuenberger said.

“Some people have a whole cultural background that they really identify with, maybe it was even part of their upbringing, and all of a sudden they’re kind of cut off from it,” she said. “It can lead people to question this connection and whether they have a right to it if it is not proven by a genetic test.”

Such desires for specific cultural connections vary significantly from country to country, noted Caulfield – whose research found that consumers in countries like Canada and the US take tests hoping for an “exotic” background that matches our countries’ cultural understanding as a genetic melting pot. Black Americans have used genetic testing to trace a lineage violently broken by the transatlantic slave trade, although some black Americans have raised concerns about privacy — as well as the way DNA testing could reify racial stratification. In markets like China and Japan, he said, advertising campaigns instead aim to affirm ancestral purity.

With the future of 23andMe in jeopardy, the overarching question among existing customers is now what will happen to the data they have already collected. Leuenberger noted that by entering DNA into a database, users are sacrificing not only their own privacy, but also that of their blood relatives. Because a person’s DNA is similar in structure to that of their relatives, information about others can be obtained from one person’s sample. This is particularly evident with the emergence of open access DNA websites such as GEDMatch, where users can upload genetic data that can be compared with other samples. A consumer genealogy test helped identify serial killer Joseph James DeAngelo.

“The ethical issue with genetic data is that it’s not just about self-knowledge, but also knowledge about all your relatives,” Leuenberger said. “Morally speaking, it’s not necessarily your information that you can share – and that risk becomes even greater if that company goes bust and the fate of the data becomes even more perilous.”

To minimize these risks, I requested that my account be deleted and that the company send me a copy of my information. I received an email confirming my deletion request – with some restrictions. While samples I agreed to retain would be discarded, if I had consented to my data being used for research purposes, this information could not be withdrawn or reversed. Luckily I didn’t have that. 23andMe and its genotyping laboratories are required by the federal Clinical Laboratory Improvement Amendments of 1988 and California laboratory regulations to retain my genetic information, date of birth and gender. In other words, the company is obliged to retain some parts of the information that I request to be deleted. The Company will also retain “limited information” related to my deletion request.

23andMe declined to respond to questions about the type of genetic information that needs to be stored. In a statement, spokeswoman Katie Watson noted 23andMe’s “strong customer privacy protections,” including not sharing customer information with third parties without the customer’s consent. Many privacy concerns revolve around what happens to the data if 23andMe changes ownership or goes bankrupt. Regarding these concerns, Watson pointed out that the company’s CEO, Wojcicki, has stated that she intends to take the company private and is unwilling to consider third-party acquisition proposals – thus maintaining the current privacy policy.

“We are committed to protecting customer data and are consistently focused on maintaining our customers’ privacy,” Watson said. “That won’t change.”

As for my genetic data, I received a copy of my ancestry report – which confirms my largely British ancestry – and a 17MB text file containing my entire genome. Although many privacy laws make it mandatory to obtain such data, this raises questions about how useful it really is to demand our data back from tech companies, Caulfield said. Referring to a 2020 study, He said consumers fundamentally feel they should have a right to their genomic information — even if they can’t understand the raw mass of millions of As, Cs, Ts and Gs.

“It’s important for people to have a right to this data dump of their entire genome, even if it’s meaningless to virtually every person on the planet,” Caulfield said.

So what do I do with my newfound self-image and the long list of genotype identifiers sitting on my computer desktop? Nothing. I have not traveled much in Europe and therefore have not yet visited any of my different home countries. When I travel to London in the near future, perhaps I will be overwhelmed with a sense of belonging and all my worry about who owns my genomic information will be worth it. But I doubt the compromise resulted in anything other than resounding ambivalence and the sacrifice of my genetic self.