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Why We Cannot Trust DNA Companies Like Ancestry and 23andMe

Biometric identification — of which DNA testing is a form of along with fingerprinting, facial recognition, etc. — was not created in a race-neutral vacuum.

By Vanessa Taylor

With the popularity of at-home DNA tests rising, the idea of companies using their databases to conduct medical research is noble on its surface. Earlier this month, 23andMe announced that it sold the rights to a drug developed using its customers’ data. Although many saw this as a positive for medical advancement — with 23andMe’s vice-president, Emily Drabant Conley, even referring to it as a “seminal moment” for the company — it cannot be divorced from wider concerns around the harm that these companies can cause. 

There is much more to be concerned about when it comes to at-home DNA tests than there is to celebrate in this moment, particularly as database numbers continue to climb. In February 2019, MIT Technology Review reported that companies could expect to have the genetic makeup of more than 100 million people within 24 months. Currently, the bulk of that information is stored with Ancestry (which has more than 15 million individuals) and the aforementioned 23andMe (more than 10 million individuals). 

On social media, many responded to 23andMe’s announcement with one name: Henrietta Lacks

Lacks died of cervical cancer in 1951. Before her death, John Hopkins Hospital removed some of her cells during a biopsy and used them for research without permission. Those cells — now named HeLa cells — became the first immortal cell line. Her family has not seen any of the profits from the many medical advances that have occurred thanks to HeLa cells. 

It’s easy to try arguing that there are no similarities here. First, nobody asked Lacks’ family for permission, while DNA companies say they only use information from volunteers. In addition, 23andMe’s terms of service explicitly states that “you will not receive compensation for any research or commercial products that include or result from your generic information or self-reported information.” However, linking 23andMe’s drug to an overt example of anti-Blackness in the medical industry is where people’s gut feelings are leading them right. 

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Biometric identification — of which DNA testing is a form of along with fingerprinting, facial recognition, etc. — was not created in a race-neutral vacuum. On the contrary, you can trace early forms of biometric identification to anti-Blackness through the branding of enslaved people’s bodies with hot irons, as outlined by Simone Browne in Dark Matters: On the Surveillance of Blackness. Browne also writes that “biometric information technology — as a measure of the black body — has a long history in the technologies of slavery that sought to govern black people on the move, notably those technologies concerned with escape.”

Before at-home testing became popular, DNA was largely associated with forensics and the criminal justice system. It was a technology used to capture, to convict, and to prevent “escape” from “justice”, leading to the overrepresentation of Black people within the Combined DNA Index System (CODIS), the same system that will store samples DHS obtains from detained immigrants under a Trump administration program that is nothing more than thinly-veiled eugenics. Erin Murphy articulated issues surrounding DNA in Inside the Cell: The Dark Side of Forensic DNA, writing, “The same broken criminal justice system that created mass incarceration and that has processed millions through its machinery without catching even egregious instances of wrongful conviction, now has a new and powerful weapon in its arsenal.”

On one hand, at-home DNA testing companies like Ancestry and 23andMe seem to have the reverse problem as their databases are overwhelmingly white. That’s why Ancestry tried to appeal to Black people by broadcasting ads during the Roots miniseries in 2016 and made a failed attempt with that notorious slavery-themed ad. Then 23andMe went ahead and outright offered free tests to 10,000 African Americans to help fill holes within medical research of genetic diseases. These companies also seem to exist outside of the criminal justice system, but that’s not actually the case as a severe lack of regulations is creating new vulnerabilities. 

In November, the New York Times reported that a detective from the Orlando Police Department was able to obtain a warrant to search the entirety of GEDmatch’s entire database (about 1.3 million people). While significantly smaller than Ancestry and 23andMe, the decision opens up a precedent for law enforcement to access their databases, too—whether users consent to it or not. 

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This could be seen as an invasion of privacy or it could be seen as an extension of biometric identification’s roots within anti-Blackness. After all, what is privacy when Black people are supposed to constantly be surveilled? What is privacy when a Black woman’s cells are harvested and used by white-led companies to profit off her body even in her death? What is privacy when Black communities are hyper-policed anyway, with human eyes performing the same function as surveillance cameras, the same bogus methods of identification as facial recognition or DNA?

Biometric identification like DNA testing may don new masks through companies like Ancestry and 23andMe who will advertise themselves as neat Christmas gifts or ways to discover your roots. But even if people forget, the world remembers, and so DNA as a technology can never be divorced from its roots. That’s why it’s not only more than fair to side-eye at-home DNA testing companies, especially as they move to profit off their troves of genetic material. 

Vanessa Taylor is a writer based out of Philadelphia, although the Midwest will always be home. She has work in outlets such as Teen Vogue, Racked, and Catapult. Her work focuses on Black Muslim womanhood and the taboo. You can follow her across social media at @bacontribe.

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