23andMe faces implosion. As the once-promising genetic testing company fails (losing 98% of its $6 billion value, all of its independent board members, nearly half of its staff) and many of its 15 million customers. they are fighting delete your DNA data from company files. I am one of them.
My reluctant path to 23andMe began in 2016, when I ordered a kit by mail. After leaving the box on my desk for weeks, I finally spit into a tube and sent it to the company for analysis. I am a technology journalist; I like to think I’m thoughtful about the data I share with corporations. When it came to genetic data, which unlike a password or credit card number can never be changed, I was especially cautious.
My father’s side of the family is meticulous in tracing our ancestry, with records containing the exact name of the small town in Ireland our ancestors came from. My mother’s side is less thorough. Although I know that my grandmother’s great-grandparents came to the US from Denmark and spoke little English for much of their lives, I have no idea what country our last name, Galusha, comes from. I wanted to know more. So, despite my doubts (which were many), my curiosity prevailed and I sent a test.
What did I get in exchange for giving the company $119 and indefinite access to my genetic data? Confirmation that I am 63% British and Irish, 17% Danish and otherwise “broadly North West European”. I felt a strong ambivalence about the results, including some disappointment that I had not discovered a new heritage, information that would give my identity a new dimension. I was also surprised to discover that some parts of my identity present in family tradition (a Czech heritage) were not actually present in my genes. Now, as the company’s imminent collapse raises serious concerns about what will happen to its database of users’ genomic information, I am struggling to reconcile the fact that I gave up my genetic privacy to discover that I am majority British.
Timothy Caulfield, a professor at the University of Alberta who has studied the motivations for undergoing genetic ancestry testing and how consumers respond to their results, said my reaction, one of ambivalence, is actually the most common.
“Pop culture tells us that we’re supposed to care, that your genes matter,” he said. “But a lot of people get the results and find them very disappointing.”
In addition to finding my results inconsequential, I always found the idea of genetic testing to determine ancestry complicated and was hesitant to accept the idea that my genetic origins had any bearing on who I am as a person. Caulfield, who was challenged about his own ancestry despite similar misgivings, feels the same way. He claims that race is “a biological fiction,” which these companies promote, marketing the idea that our genes are relevant to how we see ourselves as individuals. This mentality, Caulfield says, is “the essence of racism.”
“On the one hand, it makes me angry; I think it’s an incredibly harmful trend, especially in this polarized world that we live in, where we’re becoming more tribal,” he said. “But at the same time I understand it. People look for roots. They are searching for meaning. They are looking for a tribe to belong to. And I think marketing influences that idea.”
That marketing was wildly successful for the better part of two decades. 23andMe was co-founded in 2006 by Anne Wojcicki. When it went public in 2021, the company was worth $3.5 billion, and its value peaked at $6 billion shortly after. Competitors like Ancestry.com and MyHeritage entered the sphere, and by 2024, more than 40 million people worldwide had undergone consumer genetic testing.
The individual appeal of these tests varies widely, but many consumers expressed an explicit desire to understand the personal origins that inform their identities, said Muriel Leuenberger, a postdoctoral researcher at the University of Zurich whose work focuses on the philosophy of identity and genealogy. .
“One hope I see in people who undergo these tests is to develop a richer self-conception,” he said. “There’s this idea that you get this information and suddenly things you’ve done in the past or character traits you have can fit together and make sense in a different way than before.”
For many people, such trials can reframe a sense of identity, for better or worse. Many have shared stories about a genetic test disproving a long-standing family tradition, such as a long-cited story about denying Native American roots, for example. I had always heard that my family was Czech, a heritage that did not appear in any percentage in my results. This identity was not part of my upbringing beyond passing references, so finding out that it didn’t exist had a huge impact on me. However, similar discoveries can lead to existential crises for those who are closely associated with a certain identity, Leuenberger said.
“For some, you have a whole cultural background that you really identify with, maybe it was even part of your upbringing, and suddenly you’re kind of isolated from it,” he said. “It may lead people to question this connection and whether they have a right to it if it is not proven by genetic testing.”
Such desires for certain cultural connections differ substantially by country, said Caulfield, whose research found that in places like Canada and the United States, consumers take tests in hopes of having an “exotic” background that aligns with their cultural understanding. countries as a genetic melting pot. . black Americans I have used genetic testing to trace a lineage violently fractured by the transatlantic slave trade, although some black Americans have raised concerns about privacy as well as the ways in which DNA testing risks reifying racial stratification. In markets like China and Japan, he said, advertising campaigns seek to appeal to the reaffirmation of ancestral purity.
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With 23andMe’s future in jeopardy, the general question among former customers is what will happen to the data that has already been collected. Leuenberger noted that by entering DNA into a database, users sacrifice not only their own privacy but also that of their blood relatives. Because an individual’s DNA has a similar structure to that of their relatives, information about others can be obtained from a person’s sample. This is especially pronounced with the rise of open access DNA sites like GEDMatch, where users can go up genetic data that can be compared with other samples. A consumer genealogy test contributed to the identification of serial killer Joseph James DeAngelo.
“What’s ethically complicated with genetic data is that it’s not just self-knowledge, but also knowledge of all your family members,” Leuenberger said. “From a moral point of view, it is not necessarily information that you can give away, and this risk is exacerbated if this company goes bankrupt and the fate of the data becomes more dangerous.”
In an attempt to minimize these risks, I requested that my account be deleted and that the company send me a copy of my data. I received an email confirming my deletion request, with some warnings. While the samples I agreed to be stored would be discarded, if I had chosen to have my data used for research, that information could not be removed or disposed of. Luckily he hadn’t. 23andMe and its genotyping laboratories are required under 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 must retain some parts of the information that I ask it to delete. The company will also retain “limited information” related to my deletion request.
23andMe declined to answer questions about the nature of the genetic information it must retain. In a statement, spokesperson Katie Watson cited 23andMe’s “strong customer privacy protections,” including not sharing customer data with third parties without the customer’s consent. Many privacy concerns center on what will happen to the data if 23andMe changes ownership or goes bankrupt. Regarding those concerns, Watson noted that the company’s CEO, Wojcicki, has stated that he intends to take the company private and is not willing to consider third-party acquisition proposals, thus maintaining the current privacy policy.
“We are committed to protecting customer data and constantly focus on maintaining the privacy of our customers,” Watson said. “That won’t change.”
As for my genetic data, I received a copy of my ancestry report (confirming my majority British heritage) and a 17MB text file containing my entire genome. While being able to receive such data is mandatory under many privacy laws, it raises the question of how useful it really is to get our data back from tech companies, Caulfield said. Reference a study carried out in 2020, He said that at a fundamental level, consumers 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 that people have the right to this data dump with their entire genome, even though for virtually every human being on the planet this doesn’t make sense,” Caulfield said.
So what will I do with my new understanding of myself and the long list of genotype identifiers I have on my computer desktop? Nothing. I have traveled little in Europe and therefore have not yet visited any of my disparate countries of origin. Maybe if I head to London in the near future, I will be overwhelmed by a feeling of belonging and all my angst about who owns my genomic information will be worth it. But I doubt the trade-off resulted in anything more than blunt ambivalence and the sacrifice of my genetic self.