From Libby Copeland
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 development, impact, and potential. Bay Area residents will have an unobstructed view as this industry evolves and raises profound questions about privacy, criminal justice, and the future of healthcare.
No home DNA tests were started in California. Its American origins began in 2000 when FamilyTreeDNA of Houston sent out its first testing kits for ancestry purposes. However, the field was changed 15 years ago with the formation of 23andMe in Sunnyvale, which from the beginning focused on the effects of home DNA testing on health and inherited traits. 23andMe is truly a Silicon Valley creation, with major early investments from Google, Genentech, and Mohr Davidow Ventures.
The field has been transformed again in the past few months by three major acquisitions: 23andMe announced that it will go public through a merger with a company founded by billionaire Richard Branson, valued at $ 3.5 billion. Blackstone completed the majority acquisition of Ancestry for $ 4.7 billion. And MyHeritage announced that it will be acquired by Francisco Partners, a San Francisco-based private equity firm, for a reported value of $ 600 million.
Home DNA testing, which grew early in popularity as a product to assist amateur genealogists, turned into a bargain purchase and a popular Christmas gift for tens of millions of people eager to learn more about their heritage. But 23andMe is betting that the future of the industry lies in initiatives like new drug development on the health side. “We have always seen health as a much bigger opportunity,” said Anne Wojcicki, co-founder of the company, recently. According to Wojcicki, the COVID-19 pandemic reaffirmed 23andMe’s vision to advance health care, which has sparked a greater buzz in both disease prevention and pharmaceutical development.
However, the three recent acquisitions have revived questions about the privacy of sensitive genetic information when companies merge and change hands. Interesting questions also arise about the relationship between the home DNA tester and the information revealed by the test.
Consumers typically pay around $ 99 for parentage testing and more when health and parentage testing are bundled. The research that is based on this genetic data and information, voluntarily provided by consumers, can in turn be used to develop future therapeutics for diseases such as cancer. However, the tester who provided the critical data does not benefit from the lessons learned, leading some industry observers to describe the relationship between industry and consumers as deeply asymmetrical.
Clear ethical issues have arisen with the use of DNA test results at home in another area called the criminal justice system, and again here the numbers in the Bay Area play a prominent role. Paul Holes, at the time a cold investigator with the Contra Costa District Attorney’s Office, urged the use of consumer genetic information in the infamous Golden State Killer after years law enforcement databases failed to find a match for the killer’s crime scene DNA. The approach resulted in the arrest and conviction of Joseph James DeAngelo.
However, recent reports from the Los Angeles Times revealed that MyHeritage’s DNA database was used to 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 clients. Such revelations raise questions about the willingness and ability of some companies to protect at least the most sensitive information of their consumers.
Even the sheer number of people tested poses problems. According to Pew Research, more than 15% of American adults have had a mail-in DNA test. This has led to a tipping point – far more of us are potentially affected by this technology than actually tested. Because of the nature of family – our shared genetic segments and life together – people who are not in consumer genetic databases are still often identifiable by genetic relatives searching for them.
This has a myriad of effects. It has challenged promises about the anonymity of sperm donors, given adopters access to knowledge about their birth families, and resolved long-held family secrets, leading to widespread intergenerational billing. Millions of Americans have been affected by these revelations, leading to an increase in mental health professionals offering therapeutic support for a phenomenon that barely existed just 10 years ago – “misrepresented ancestry experiences” resulting from DNA testing of Surrender to consumers. This is a technology that touches our most intimate lives and represents great cultural changes that we will talk about in the decades to come.
Industry experts say privacy concerns, as well as the saturation of home DNA testing, explain why spit kit sales have slowed over the past two years, as so many Americans with genealogical interests have already used one or more services. However, 23andMe’s long-term focus has always been on health – medical research, pharmaceutical development, preventive intelligence – and the databases have already grown large as testing for ancestry purposes continues to grow in popularity.
The era of genetic reckoning is upon us, with all that it implies about the future of privacy, criminal justice, and health care. The Bay Area will no doubt be at the forefront of what’s to come, as it has been for years. To see the future of this extraordinary cultural phenomenon we only need, as they say, “to observe this space”.
Libby Copeland, an award-winning journalist and former media scholar at Stanford University, is the author of “The Lost Family: How DNA Tests Tell Who We Are”. The paperback edition will appear in June.
Bay Area News
If you find our journalism valuable and relevant, please consider joining our Examiner membership program.
Learn more at www.sfexaminer.com/join/