The once-popular and now-bankrupt DNA testing company 23andMe is about to sell its trove of genetic data to the highest bidder, marking a rare bipartisan moment of shared horror among legislators who say it’s finally time to create a national privacy law.
For the second day in a row, the company’s top executive was pummeled on Capitol Hill over concerns that the company is about to transfer roughly 15 million people’s genetic information to a pharmaceutical company or a newly created firm — without any guarantee that it would not be misused.
The hearings come just as 27 states and the District of Columbia filed suit against the company and urged residents to ask the company to delete their data.
Interim CEO Joe Selsavage repeatedly asserted that customers could easily make those deletion requests, even though a surge had temporarily shut down the company’s website.
But things took a turn when Republican Sen. Josh Hawley, who represents Missouri, where the company recently filed its bankruptcy case, pointed out that 23andMe’s legal fine print actually says the company will retain your genetic information even if you choose to delete your account.
“Senator, to the best of my knowledge, we do not maintain any genetic information,” Selsavage said, as Hawley pointed to a highlighted printout.
“Your consumers aren’t actually in control of anything — you are. You control their data, you control their information ... in fact, you’ve lied to them, have you not?” Hawley clamored. “I hope they will rush to the courthouse, even as we are here today, to sue you into oblivion for lying to them.”
Facing questions from Democratic Sen. Amy Klobuchar, the 23andMe executive claimed that only 1.3 million customers had asked for their genetic information to be wiped from the company’s computers — and that the backlog is now cleared.
For now, fears that a database of Americans’ DNA will end up in China or Russia are tempered with the reality that 23andMe is about to approve a sale to one of two companies. One is Regeneron, the pharmaceutical company that created a monoclonal antibody “cocktail” to treat COVID-19. The other is TTAM Research Institute, a new nonprofit led by the scorned 23andMe cofounder Anne Wojcicki, whose efforts to buy the company were previously rebuffed by the board of directors.
Still, senators all expressed concern about how this kind of data could be misused in the future by medical insurers, employers and other companies that could cast predetermined judgments on people based on their genetic makeup.
“In the wrong hands, it can enable dystopian discrimination and surveillance can be used by our adversaries,” Sen. Dick Durbin said. “There are very few federal guardrails to protect your most sensitive data ... it’s time for Congress to put some protections in place for Americans.”
Sen. Chuck Grassley, the chair of the Judiciary Committee, expressed a fear that foreign adversaries could “conduct tailored attacks on key military and government personnel.”
“In light of the serious evidence that COVID-19 was created in a Chinese laboratory, the weaponization of biologics and the military applications of genomic data are no longer far-fetched fantasies of science fiction,” Grassley said.
Wednesday’s hearing presented a rare, bipartisan moment in Washington — save for a brief detour by Republican Sen. Katie Britt, who used it as an opportunity to question the science-company executive about gender identity.
In the tech world, the past decade has been defined by increasingly intrusive consumer cell-phone settings, widespread personal-information tracking by social media companies, and a Wall Street obsession with accumulating “Big Data” to guide business decision making — all while cybersecurity experts have been sounding the alarm on the frequency of massive data thefts by hackers. The United States still does not have a national privacy law that applies to the internet age, relying instead on a patchwork of state codes.
The pending sale of 23andMe has renewed calls for a national debate about personal ownership of one’s information.
Rep. Clay Higgins touched on that when Selsavage testified at a similar House Oversight and Government Reform Committee hearing, where the congressman pointed out that “15 million people become 100 million descendants.”
“Congress must act in response to this newly emerging threat, because you’re not just talking about 15 million people for 23andMe,” he said. “So this body is going to create legislation, and that legislation will impact the sale of this data.”
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Jose Pagliery is a reporter at NOTUS. Em Luetkemeyer contributed reporting.