Finding out your ancestry? Here’s what happens to your DNA sample.
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DNA for Sale
For DNA testing companies, the genetic code that customers pay to have analyzed is a gift that keeps on giving. Not only do these companies profit from DNA analysis, but they stand to make money for decades more marketing people’s data to the highest bidders.
Ancestry, which controls a database of more than 9 million DNA samples, is one of the companies marketing its genetic storehouse. The Utah-based company has no formal policy on what partnerships it will or will not pursue, but company officials say they’d never risk a collaboration that could be viewed as exploitative. “We only want to do research totally on the up and up,” said Eric Heath, chief privacy officer for Ancestry.
But when customers sign up to have their data shared with research partners of Ancestry, 23andMe and other companies, they are taking a leap of faith. Ancestry’s main research partner is Calico, founded by Google and now part of its Alphabet Inc. parent company, which researches therapies aimed at extending the human life span. Unlike public institutions, California-based Calico discloses little about its DNA work, and many view it as a vanity project for Silicon Valley billionaires seeking breakthroughs to extend their own lives.
“Calico was founded around the idea of making people live forever,” said John Simpson, an advocate with Consumer Watchdog, a nonprofit group that monitors Google and other Silicon Valley players. “It is very murky, and they are not very forthcoming about what they are doing.”
Marcy Darnovsky, executive director for the Center for Genetics and Society, said that Ancestry’s millions of customers are likely unaware that, when they click the “consent to research” box, their DNA information is being used by a private company for private gain.
“If Google is behind it, it is important for people to understand what they are doing, and the money behind it,” said Darnovsky, whose Berkeley-based group monitors the tech industry and bioethics issues.
Supporters of commercial DNA testing say there is nothing wrong with this form of molecular monetization. The databases of DNA-testing companies hold the potential to explore the genetic origins of diseases. Private capital will be needed to fully analyze and explore this data, they argue.
But DNA is a person’s most unique identifier, and privacy experts say the sharing of this data increases the risk it could be stolen or exploited. Ancestry’s record of safeguarding customer data has been a focus of a three-month McClatchy investigation publishing this week.
Heath said Ancestry has protocols in place to protect people’s private information. Ancestry only shares data of customers who have consented to let their data be used for research. And it only shares a subset of customers’ data with Calico, scrubbed of any identifying information.
As for Calico’ research interests, they are fairly obvious, said Catherine Ball, Ancestry’s chief scientific officer. The Alphabet subsidiary, she said, is querying Ancestry’s databases to identify families with a record of long lifespans, and then analyzing their DNA to discover genes that might be contributing to those golden years.
“The data set we have allows us to do a really statistically rigorous estimate of what is the genetic component to longevity,” Ball said during a recent interview in San Francisco.
Calico, short for California Life Company, was founded by Google in 2013 with $1 billion in funding. It was the brain child of Bill Maris, the founder and former CEO of Google Ventures, which was tasked in launching “moon shots” in various fields, including medical science.
Google’s founders, Larry Page and Sergey Brin, have long voiced interest in research to extend life span. Brin inherited a gene that predisposes him to Parkinson’s disease, and Page has nerve damage that affected his vocal cords. When Maris approached the two about founding a company that might help people live longer, Page reportedly declared, “We should do it here!”
Google’s founders aren’t the only Silicon Valley billionaires interested in living longer. PayPal’s Peter Thiel and Amazon’s Jeff Bezos have invested in life-lengthening research. Oracle’s Larry Ellison, who has put $430 million into anti-aging science, once famously said that “death never made any sense to me.”
While Calico officials won’t say much about their internal operations, they have pushed back against claims they are merely engaged in a vanity project, aimed at helping the rich live forever. That idea was spoofed last year in an episode of HBO’s “Silicon Valley” series.
In an interview with Bloomberg TV in 2016, Maris stated the company’s goal was ambitious, but no more so than the original moon expeditions. “The idea of extending life is more about — can we live vigorous, healthy lives, get more life out of our years, and get more years out of life?” he said.
Calico’s CEO is Arthur D. Levinson, a former CEO of Genentech, former director of Google from 2004 to 2009 and current board chairman of Apple Inc. The company has its offices in South San Francisco — in the same Oyster Point tech park as Genentech, Amgen and other biotech giants — and is famous for revealing little about its scientific pursuits.
The fact that Calico chose Ancestry for a partnership, instead of Ancestry’s main competitor 23andMe, is a source of endless speculation in Silicon Valley. 23andMe was founded by Anne Wojcicki, who was married to Google’s Sergey Brin for eight years before they divorced in 2015, the same year Ancestry and Calico announced their partnership.
23andMe and Ancestry are known to be combative competitors. Early in May, 23andMe filed suit against the Utah-based company in California federal district court, alleging it infringed on its patented method for identifying relatives from strands of DNA.
Neil Cohen, a spokesman for Calico, said the company would not comment on its Ancestry partnership beyond what the two companies included in a press release in 2015, and this emailed sentence: “Results from our research collaboration with Ancestry have recently been submitted to a peer-reviewed scientific journal and we expect them to be published in the near future.”
Ball, the Ancestry scientific officer, also declined to go into detail about the collaboration, at one point cutting off a reporter’s questions. But she did say the partnership allows Calico to query Ancestry’s extensive collection of family trees, and also get a statistical summary of DNA data. Ancestry’s DNA database includes more than 9 million records, and according to Heath, anywhere from half to 70 percent of customers consent to have their data used for research.
“None of that data lives at their house. They use it on our computers, with our permission,” Ball said. The data they access has been scrubbed of customer’s names, birth dates and other identifying information, but does include the year of birth, for research purposes, she said.
Both Calico and Ancestry are interested in families that tend to have numerous long-lived members, and the degree that inherited genes contributed to that longevity.
“We all have it in our heads that there are some families that always seem to live past 90,” said Ball. “Is it because of their clean living, their genes, their medical care? We don’t know.”
Some researchers are dubious about Calico. Kari Stefansson, a world-renowned Icelandic geneticist who founded the company Decode in 1996, has spent decades examining longevity in Iceland, a country with a homogenous population and a national DNA database far more detailed than Ancestry’s.
Stefansson said there are so many variables that affect lifespan that he doubts the Alphabet subsidiary can make any real breakthroughs.
“This Calico, this commercial effort to extend lifespan, is somewhere between laughable and pathetic,” he said in a recent interview at Decode’s headquarters in Reykjavik. “To base a commercial enterprise on the ability to make discoveries that are that fundamental is very, very difficult.”
Ancestry is hardly the only DNA data company marketing its customers’ data. 23andMe has collaborated with pharmaceutical companies such as Lundbeck and Pfizer. Helix, a collaborator with National Geographic, is launching more than 20 DNA analysis products with partner companies such as Vinome, DNAFit and Genome Medical.
Privacy experts say it increases the risk of compromising customer’s most sensitive information — their DNA data.
“23andMe and Ancestry and other companies say they have the best security protocols, and I am sure they are very robust,” said Peter Pitts, a former Food and Drug Administration associate commissioner. “But once they share people’s genetic information with partner companies, they can’t be responsible for security protocols of those partner.”
While Ancestry officials say they have the strongest possible security protocols, the company acknowledged in a 2016 Securities and Exchange Commission filing that its research collaborations posed privacy risks.
“If our third-party DNA testing or research providers fail to comply with privacy and security standards, as required pursuant to the terms of our agreements with such providers, this could have a material adverse effect on our business, financial condition and results of operations,” the company disclosed.