In 1984, a genealogy geek named John Sittner published The Source, a book meant to unearth and analyze never-before-seen records that genealogists could use to put together family histories with unprecedented detail. Several years later, he founded Ancestry magazine to teach people how they could use public archives and technology -- which, back then, meant CD-ROMS and primitive websites and search engines -- to build out their family trees.
Sittner sold the company long ago, but three decades after it began, Ancestry.com -- the $1.6 billion Internet company that his magazine evolved into -- is poised to become one of the most unlikely, yet powerful, scientific tools in the world. For about three years, it’s been collecting and analyzing genetic information through a service called AncestryDNA, and in the process, quietly asking consumers if they’d be willing to share their data with Ancestry for research. To date, it’s banked more than 800,000 samples from customers all over the world, rivaling the database of Google-backed genetics-analysis company 23andMe, which boasts about 900,000 samples. And now, armed with mountains of health data, Ancestry.com is slowly transforming itself from a retiree’s hobby into a medical research juggernaut.
“We actually do think that health is a pretty natural extension of the core mission to help everyone discover, preserve and share their family history,” Ancestry.com CEO Tim Sullivan told me earlier this week, during a visit to the company’s San Francisco offices. “We’re exploring ways that we could participate in health and provide our users with health insights, for sure….ways that we could leverage the data we’ve aggregated to support research efforts, similar to what 23andMe has done with Genentech and others.”
Long before Ancestry.com got into the DNA game, it had ties to the Mormon church. Its owners were two Brigham Young University grads who had made their fortune selling Latter-day Saints publications on floppy disks. Access to Ancestry.com was free at LDS Family History Centers, and recently the company signed a deal with the church’s genealogy non-profit, FamilySearch.org.
Ancestry.com’s huge advantage over services like 23andMe is its age; since it has been collecting ancestral data about its users for decades, it knows health information not just about its users, but about their great-grandparents and great-great-grandparents. That information, coupled with surveys and modern-day genetic testing, can inform users of any hereditary conditions that run in their family, and help them project health problems in their future. Recently, the company has been testing a “family health history experience,” which will eventually help people use their family trees to aggregate family health history from their living family members.
“Our records give us a lot of family health history. It’s super interesting. Your family health history is what your doctor always asks about. It’s extremely informative for your future health,” said Kenny Freestone, the product director for AncestryDNA. “The actual genetic markers and data also are informative, but they’re one piece of the data. We are really interested in a holistic approach.”
As Ancestry.com pivots into medical research, it would be wise to learn from the example of 23andMe, which has spent much of its life tangled up with federal regulators. 23andMe is Silicon Valley’s biotech darling -- a sexy, headline-grabbing company that was co-founded by Anne Wojcicki, a biologist who married Google co-founder Sergey Brin—but its reception by the government has been less glowing. After being told that it wasn’t allowed to market its spit-in-a-vial genetic test as a medical diagnostic, 23andMe went ahead and did it anyway. Last year, the U.S. Food and Drug Administration sent the company a cease and desist letter, essentially shutting down its direct-to-consumer genetics arm domestically. In February, the company got the FDA’s green light to sell consumers its genetic test for Bloom Syndrome, a rare genetic condition.
Outside the consumer realm, though, 23andMe has had some victories. The company’s massive database landed it some megadeals with pharmaceutical giants Genentech and Pfizer earlier this year, and last month, it launched its own drug-discovery lab, 23andMe Therapeutics.
Ancestry.com has a chance to succeed on the same scale, but first, it will need to navigate some of the same pitfalls 23andMe did.
“We want to be the largest personal genomics company on the planet,” Sullivan said. “But we want to get it right.”
Already, Ancestry.com is marketing a spit-box test similar to 23andMe’s that analyzes a user’s DNA and spits out a detailed breakdown of ethnic heritage, including where the user’s her ancestors came from, and which other Ancestry.com users he or she might be related to. Since it doesn’t have approval to conduct medical diagnostic tests, Ancestry.com can’t tell users if their DNA indicates a higher risk for ovarian cancer or Alzheimer’s disease. But the company is getting ready to talk to the FDA about that, and hopes to win the approval that 23andMe didn’t.
As it aims for the consumer DNA testing market, Ancestry.com is continuing to gather massive, massive amounts of information about users and their families, as it has done since the early days. This week, the company unveiled Ancestor Discoveries, a product that automatically identifies ancestors going back to the 1700s, drawing on the company’s treasure trove of archival and crowdsourced historical documents, public records, and photographs. And the company has plans to expand to Mexico and Germany because the data generated in those markets will beef up the offerings in the U.S.
Like 23andMe, Ancestry.com eventually hopes to make money by selling anonymized data about its users to large pharmaceutical and biotech companies. Already, the site has has had some initial conversations with companies that “might value [its] data for purposes of research,” Sullivan said, though they haven’t struck any deals yet.
Those deals, if they happen, risk sparking privacy worries among Ancestry.com’s users, as they did when 23andMe began selling its data to the highest bidder. But Sullivan and Freestone are confident that even if some users grimace at the idea of their genetic information being sold to Genentech or Pfizer, the long-term benefits will make the discomfort worth it. After all, when you go to the doctor, one of the first things they ask for is a medical history of you and your relatives. If Ancestry.com is able to merge its collection of family trees with a large-scale DNA database, it would create a useful, generation-spanning fount of medical information, which could help millions of users see the health problems that await them and take preventative steps.
“As these networks grow, maybe there’s some really interesting leaps we can make,” Freestone said. “Here we’re leaping from genetic markers to potential ancestors. Can we leverage this sort of technology into future health predictions also?”