If You're Black, You Have Every Right To Be Paranoid About Where Your Genetic Data Is Going

There’s a 23andMe spit collection kit sitting somewhere in my bedroom, unopened, unregistered and collecting dust. I spent $79 on the kit, hopeful to connect with long-lost relatives and uncover my African ancestry, which, like millions of Black Americans, was all but erased by the transatlantic slave trade.

Any curiosity I had, though, was no match for my more powerful paranoia.

Where would my genetic data go after I dropped it in a mailbox and sent it to a lab for an intimate analysis performed by some anonymous professional on behalf of a publicly traded company? I felt one could never be too sure.

Direct-to-consumer genealogy research company 23andMe has marketed itself as a bridge linking Black Americans impacted by the slave trade to their ethnic genealogy on continental Africa. The company actively recruited people with four grandparents from sub-Saharan Africa for a genetic research project in 2013 and, over the years, has strived to give users details about the ancestral African tribes and cultures from which they originate.

While 23andMe has not disclosed the total number of Black Americans who submitted DNA since the company launched its test in 2007, the company announced in 2016 that 45,000 of the about 1.2 million users participating in 23andMe research, or just under 4%, identified as African American. If that ratio held, 23andMe may have the DNA and genetic data of more than half a million Black people today.

Last week, the genetics company filed for bankruptcy and will sell its trove of user-submitted DNA to the highest or best bidder, the company said in an open letter to customers about the bankruptcy proceedings. Auctioning off Black genetic material in 2025 sounds like the beginning of a sci-fi novel written in 1964, but hey, what could go wrong?

To find out, I spoke to experts (who aren’t affiliated with 23andMe) about how America’s persistent legacy of discrimination, racial profiling and race-based disparities in everything from health research to criminal justice means Black users could face unique security risks.

“These companies in some ways are providing vital family histories for African Americans,” says Ifeoma Ajunwa, a legal scholar and associate dean at Emory Law. “On the other hand, there is a concern that the terms of service of some of these companies may leave African American genetic data vulnerable to breach.”

Limited federal law coupled with the now-eminent sale of user-submitted genetic data exposes the Black community to potential race-based discrimination, according to bioethicists and legal experts who I consulted. In other words, now might be a good time for Black people to download the data they want, delete what data they can from the 23andMe databases and request that their physical sample be destroyed. But even then, some information will remain in 23andMe’s possession, and experts say the lack of regulation leaves Black users unprotected.

It’s a gray area that invites the opportunity for what Ajunwa calls “genetic discrimination,” based on eugenics and pseudoscientific ideas about Black people. “It has been done in the past, so there is a worry about the misuse of this data to support racist ideas about racial categories and specifically about Black folks,” says Ajunwa.

When we reached out to the company to ask about the potential misuse of Black Americans’ data after a sale, 23andMe spokesperson Kyra Taylor said that “all bidders will be required to comply with our privacy policy,” as well as applicable laws, a point also iterated in a company press release about the bankruptcy proceedings. I know this is supposed to provide a level of relief — but the reality is more complicated.

When Troy Dontè Prestwood used 23andMe in 2019, he didn’t think of any race-specific risks, but meticulously read the privacy statement and opted out of anything he wasn’t comfortable with. Prestwood hoped the company’s extensive record of African DNA, along with its health data analyses, would help him learn more about his family’s history.

“Those of us who are of African descent in this country, we hit a brick wall when we tried to go back and find out more about where we came from,” says Prestwood, a public relations business owner. “We hit a brick wall in this country because of the sin of slavery, and so these tests offered great promise to us.”

Prestwood learned he was both Ghanaian and Nigerian, and was proud to share that knowledge with his family. After news of the bankruptcy broke, he took steps to delete his data from the site and shared an article about how to do it on social media.

Krystal Tsosie, a genetic epidemiologist and ethicist at Arizona State University who works with Indigenous groups, says once data is in the hands of companies like 23andMe and its third-party affiliates, it’s hard to know for sure where it may circulate. “Even deletion and removal of data cannot be reasonably secured,” she tells me. “You’re relying on the word of a researcher or a company that your data has been deleted.”

The relationship between genetic testing companies and underrepresented groups is fraught because they appeal directly to vulnerable communities, Tsosie notes. “If you look at the marketing for most direct-to-consumer genetic testing kits,” says Tsosie, who is a member of Diné/Navajo Nation, “they rely on capitalizing on the narrative of displacement.”

Ashley Yates, a writer and activist from St. Louis who works in nonprofit development in East Oakland, believes genetic testing companies zero in on Black Americans’ desire for connection to Africa. “It’s predatory and enabled by the American government’s continued refusal to truly acknowledge the sins of colonization and chattel slavery that allow it to exist in its current state,” she says.

“And history has shown,” Yates continues, “most technology developed with us in mind is leveraged towards the carceral.” Police already don’t always need a warrant to access user-submitted genetic data thanks to a legal concept called the third-party doctrine, Anujwa tells me. This poses an acute risk to Black Americans who endure racial discrimination in the criminal justice system.

“Once you’ve willingly given up data to one party, a third party — in this case criminal justice or law enforcement — may obtain what you’ve already given up without a warrant,” Ajunwa says.

A “transparency report” from 23andMe states it has never shared personal information with law enforcement without explicit user consent, and the company’s privacy summary states it would only share information with law enforcement “if required by a valid legal process.” Other genealogical research firms have been required to release information to law enforcement to help solve crimes.

But even if the powers that be at 23andMe take all the steps that they can to protect your data, American law enforcement (which, as we all know, operates with a very pronounced bias) plays a major factor.

Last Wednesday afternoon, Melissa Washington boarded a train for Washington, D.C., to meet her sisters and a brother for the second time ever. When Washington, who is now 57, submitted her DNA to Ancestry.com, a 23andMe competitor, in 2019, she was fascinated to learn of her connection to a Cameroonian ethnic group with similar facial features to her and her family.

Washington says she didn’t even know her DNA had been used to find genetic family members until she got a message from someone claiming to be her sister. Since then, Washington has connected with five siblings.

“And that started,” she tells me, “because of Ancestry.” Washington was never worried about how her data would be used because, she says, “it’s out there whether we like it or not.”

But, she says, if she’d known something like the 23andMe bankruptcy and data sale could have happened prior to her using consumer genealogical services, “I probably would’ve never took it.”