Home DNA testing has become a cultural phenomenon — with at least 37 million test kits sold in America — and the San Francisco Bay Area is central to its evolution, implications and potential. Bay area residents will have an unobstructed view as this industry evolves further, raising profound questions about privacy, criminal justice and the future of health care.
Home DNA testing did not start in California. Its American origins began in 2000 when Houston-based FamilyTreeDNA sent out its first test kits for ancestry purposes. But the field was transformed 15 years ago with the founding of Sunnyvale-based 23andMe, which focused from the outset on the implications of home DNA testing for health and inherited traits. 23andMe is truly a Silicon Valley creation, with key early investments by Google, Genentech and Mohr Davidow Ventures.
The field was transformed again in recent months with three major acquisitions: 23andMe has announced that it is going public through a merger with a company founded by the billionaire Richard Branson, in a deal that values it at $3.5 billion. Blackstone completed its majority acquisition of Ancestry for $4.7 billion. And MyHeritage announced that it is being acquired by Francisco Partners, a San Francisco-based private equity firm, at a reported value of $600 million.
Home DNA testing, which gained early popularity as a product to assist amateur genealogists, morphed into a casual purchase and popular holiday gift for tens of millions of people interested in learning more about their heritage. But 23andMe is betting the future of the industry is on the health side, in initiatives like the development of new pharmaceuticals. “We have always seen health as a much bigger opportunity,” the company’s co-founder CEO Anne Wojcicki said recently. In Wojcicki’s view, the COVID-19 pandemic has reaffirmed 23andMe’s vision of advancing health care, ushering in greater enthusiasm for both disease prevention and pharmaceutical development.
Yet the three recent acquisitions have revived questions about the privacy of sensitive genetic information as companies merge and change hands. Interesting questions also arise around the relationship between the home DNA tester and the information revealed by the test.
Consumers typically pay about $99 for ancestry testing, and more when health and ancestry testing are bundled together. Research drawing on this genetic data and information volunteered by consumers can, in turn, be used to develop future therapeutics for diseases like cancer. Yet the tester, who has provided the crucial data, doesn’t profit off the discoveries yielded by it, leading some industry observers to describe the relationship between the industry and consumers as deeply asymmetrical.
Clear ethical issues have arisen around the use of home DNA test results in a different field, criminal justice, and here, too, the Bay area figures prominently. Paul Holes, at the time a cold-case investigator for the Contra Costa County District Attorney’s Office, pushed to use consumer genetic information in the case of the infamous Golden State Killer after law enforcement databases for years failed to yield a hit on the killer’s crime scene DNA. The approach led to the arrest and sentencing of Joseph James DeAngelo.
Yet recent reporting by the Los Angeles Times has revealed that MyHeritage’s DNA database was used to help solve the Golden State Killer case without the company’s knowledge or permission, and that FamilyTreeDNA granted database access to the FBI without telling its customers. Such revelations raise questions about the willingness and ability of some companies, at least, to protect their consumers’ most sensitive information.
Even the sheer number of people tested raises issues. According to Pew Research, more than 15% of adult Americans have taken a mail-in DNA test. That has led to a tipping point — many more of us are potentially impacted by this technology than have actually tested. Because of the nature of family — our shared genetic segments and our shared lives — people who are not in consumer genetic databases are nevertheless often identifiable to genetic kin searching for them.
This has innumerable impacts. It has rendered promises of sperm donor anonymity moot, offered adopted people access to knowledge of their birth families, and disintegrated long-held family secrets, leading to widespread intergenerational reckonings. Millions of Americans have already been impacted by these revelations, leading to a rise in mental health professionals offering therapeutic support for a phenomenon that barely existed a mere 10 years ago — “misattributed parentage experiences” arising from consumer DNA tests. This is technology touching our most intimate lives, amounting to major cultural changes we will talk about for decades to come.
Industry experts say privacy concerns as well as the saturation of home DNA testing help explain why there’s been a slowdown in spit-kit sales over the last two years, with so many Americans with genealogical interests already having used one or more services. But 23andMe’s long-term focus was always health — medical research, pharmaceutical development, preventative insights — and its databases have already grown extensive with the popularity of testing for ancestry purposes.
The era of genetic reckoning is upon us, with all that this implies about the future of privacy, criminal justice and health care. The Bay Area will no doubt be at the forefront of whatever is to come, as it has been for years. To see the future of this extraordinary cultural phenomenon, we need only, as they say, “watch this space.”
Libby Copeland, an award-winning journalist and former media fellow at Stanford University, is author of “The Lost Family: How DNA Testing Is Upending Who We Are.” The paperback edition will be published in June.