Big Tech Has Your Email And Photos. Now Its On A Quest To Own Your DNA.

The race to own your genes and health data is heating up.

Traditionally, the company has made its money by signing up new subscribers or upselling or cross-selling existing ones on new products. You sign up for its family tree-making service, next thing you know you get a message saying you should try AncestryDNA, which only costs $99. By then, they’re “hooked in,” Chahine says, because their family histories, and possibly their genes, are on the site, plus they might be interacting with far-flung family members through the service, too. It’s the good, old network effect. Once you have a critical mass, it’s hard to leave.

Moving forward, though, that’s only going to be one branch of the company’s money tree. “Data licensing is another piece. That data could end up being valuable for research,” Chahine said. “We want to help enable better diagnostics, better drugs, all of that.”

To whom would they be licensing the data? Well, most likely it would be to big pharmaceutical companies like Genentech, Pfizer, and Novartis, following in the footsteps of 23andMe. Chahine says Ancestry is actively trying to broker similar deals, though he wouldn’t give any details.

To put all that data to good, financially savvy use when the time comes, Ancestry has hired Cathy Petti , a former exec at Novartis, as its chief health officer. She’ll be in charge of the company’s dealings with government regulators as they move to market a direct-to-consumer genetic test. Although they’ve got expansive genetic data on 1 million people, the only information they can disclose now is a breakdown of ethnic heritage, along with possible relatives because Ancestry doesn’t yet have approval from the U.S. Food and Drug Administration to conduct medical diagnostic tests. Petti has begun working with the FDA so that they can make known whether someone is at higher risk for conditions like cystic fibrosis or breast cancer.

And that, paired with the family history data Ancestry has, is the kind of stuff that’s really valuable to big pharma. Armed with genetics and information about people’s past and present health statuses, drug developers hope they’ll be able to home in on medications that have the greatest chance of making it through the long, arduous and expensive clinical trial process and that these will work on the patients that need them.

But to sell pharmaceutical companies on that promise, Ancestry and others need people to keep inputting data. The economic success of companies like 23andMe and Ancestry rests on consumers’ willingness to share their personal information. GoogleHealth and Microsoft’s HealthVault, two previous attempts at building personal health records, flopped because they were too clunky and people stopped using them.

Services like 23andMe and Ancestry, offer consumers great value, and that’s why millions of people are using them, says Butte.

Since its inception, 23andMe has had a user-friendly interface through which they’ve deployed thousands of surveys, amassing information about everything from whether people have been diagnosed with chronic fatigue syndrome to whether they’ve experienced a seizure or depression. In 2012, the company allowed consumers to share their data with third-party apps , the way you might link your Facebook profile to your Netflix account. On Ancestry, your family health history – that your grandma died of cancer, that your mom has high blood pressure, or that three cousins are diabetic — has to be manually added to your profile, but again, it’s easy. And, Chahine says, the company is considering linking to health data platforms like Apple’s HealthKit, which would allow them to import data from activity trackers, heart monitors, food logs, and other health-related apps. Plus, these websites have always been sold as tools that empower consumers with data and have the potential to rid the world of diseases by agreeing to “donate” their data to research.

But these companies aren’t in the business of humanitarian work. They answer to shareholders and investors. And their terms of service agreements reflect that. 23andMe makes clear that “by providing any sample…you acquire no rights in any research or commercial products that may be developed by 23and­Me or its collaborating partners.” As for Ancestry, the language in the TOS recently changed to remove phrases like “your information” in favor of “personal information.” The change is subtle, but telling. Chahine said it was part of bigger strategy that “required being able to have the right consents, and making sure the consumers understood their rights and how the data was going to be used.”

But you get the picture. So it’s important to keep in mind how we share our most personal information, lest it be sold to the highest bidder. Earlier this year there were rumors that Ancestry was up for sale, and your data with it.