How drug companies will mine your genes

Imagine a world where genetic sequencing is free, like Gmail. That’s where we’re headed. Genetic data is going the way the rest of our data has gone on the web. Companies will mine it, repackage it, and find a way to make money off it.

For eight years, personal genomics company 23andMe has been giving consumers access to their genes. It started off costing $999. Today it’s $99. In 2012, the company allowed consumers to share their data with third-party apps, the way you might link your Facebook profile to your Hulu account.

And this week, what could be seen as another step toward the full webification of our DNA went down, thanks to a new deal between 23andMe and Genentech, one of its early investors.

The Deal

To start, Genentech will pay to get access to the genetic and health information 23andMe has amassed from more than 10,000 of its customers with Parkinson’s disease, a disorder that affects movement. Genentech scientists will be able to see what medications they’re on, what other conditions they have, the symptoms they experience, along with whether they have tweaks in their DNA that put them at risk for developing the disease. (All these customers previously consented to be part of research by 23andMe and its partners.)

But the deal goes further. 23andMe will help Genentech identify approximately 3,000 customers who want to participate in more nuanced research.

23andMe only analyzes snippets of your DNA. Genentech needs the whole genome. So, it’s going to pay to sequence them, if they agree. Whether or not the patients will get that information back is still being worked out, 23andMe’s Emily Drabant Conley, who brokered the Genentech partnership, told me.

“We’re now starting to do [studies] at this really unprecedented scale,” she added. “Our database has hit a critical mass. These people can be recontacted. They’re engaged. The other thing that’s happening is pharma is seeing the value of bringing in genetics into the R&D pipeline earlier.”

You can see how this might evolve.

“With 23andMe,” wrote Lisa Miller in New York magazine last April. “[CEO Anne Wojcicki] wants to do with DNA what Google did for data—because, after all, DNA is data.” And what Google — and other web giants have done — is to create powerful platforms through which other companies can sell us stuff.

This vision of Googlized genetics thrives only in a world with minimal hurdles to getting data. It might take a decade or more, but eventually the cost will get low enough to allow companies to offer full genome sequencing for free, at massive scales.

“I would love that. It would be great…We want to have a product that’s accessible,” said 23andMe’s Drabant Conley. “I don’t foresee that happening in the near future. There are real costs involved.”

But when cost does hit that critical minimum, the true democratization of genetics will unfurl. It will just be something very different from what we were sold on.

The Promise

Eight years ago, when 23andMe first launched, it wooed technophiles with the idea that genetic information shouldn’t be locked away in a lab. It belonged to you. We had the right to spit in a tube and find out what diseases we might be at risk for, bureaucracy be damned.

Geneticist Misha Angrist, a senior fellow in Science & Policy at Duke University’s Social Science Research Institute, was one of the people who bought into that vision. He sent his DNA off to be analyzed by 23andMe and other companies that offered direct-to-consumer (DTC) genetic tests. This was the future.

Until it wasn’t.

Reports started coming out that genetic tests offered by different companies served up different interpretations of people’s genes. Sometimes, they were misleading. Genome wide association studies — the science upon which DTC genetics companies were built — started coming under fire. How much could you really tell from looking at individual mutations without analyzing the whole genome? Regulators started to notice. Then last year, the U.S. government slapped 23andMe with a cease-and-desist letter ordering it to stop marketing its spit-box genetic test as a health report. That reduced 23andMe, if only temporarily, to a glorified ancestry service since. The over-the-counter genetic testing industry, as we imagined it, seemed in jeopardy.

And then, this Genentech deal.

“I kind of think of this as a sad day. I think it’s sort of the final confirmation that direct-to-consumer genetics is not a viable business,” said Angrist. “I think this day was probably inevitable. It’s hard for me to feel betrayed. And you now if my genotype contributes to a blockbuster drug…and it improves people’s lives, I can’t be an asshole and say, ‘Boy that’s terrible!’, but given the rhetoric and the marketing of DTC genetics, which again, I admittedly bought into and wanted to buy into — I wanted it to be true — it’s hard for me to stand on the sidelines and say, ‘Yay! Rah-rah! Go Genentech.'”

That rhetoric harkened back a bit to the days of the early internet, when we learned to equate the sound of beeping modems to a superhighway of information that would empower us to be better. The information was seemingly accessible to all, for a fraction of the price it might have cost to access in the real world. That democratization morphed into something beyond our expectations, too.

“Just as it became clear that people didn’t want to pay money to AOL or Prodigy for email, Google found a way to give email away and derive ad revenue from somewhere else,” said Angrist. “It’s all the same business model,” a model in which you are the product. This internet-age adage is true, especially for DNA.

The new Genentech deal is only the beginning. Reset Therapeutics put out a press release saying it was going to use 23andMe’s massive database to study diseases related to circadian rhythms, the internal clocks that dictate when we sleep and eat. (Whether Reset will also be sponsoring its own genetic sequencing wasn’t clear.) And there are eight other deals coming, the details of which will trickle out in coming weeks. All the company would say for now is that they span a wide range of diseases and conditions.

As disappointing as the news may be to some, the strategy isn’t all bad. It could really open up new areas of research, in ways that current methods simply can’t.

“This is very exciting.  An integrated, enthusiastic cohort of 800,000 is far beyond academic capacity,” said George Church, one of the leaders of the Human Genome Project, in an email. (He’s also an advisor to 23andMe and was on the advisory board of a company recently acquired by Roche, Genentech’s parent company.) “I expect that the 23andMe cohort will continue to grow and be increasingly targeted to diseases of interest to pharma.”

Say Genentech wants to screen compounds for a new heart-disease drug they suspect might only work on a subset of patients with a certain genetic makeup. They can query 23andMe’s database, come up with potential candidates, and recontact them to sequence them. What’s more using new technologies like organoid chips, they can take skin cells from these patients, reprogram them, and build up tiny tissue-specific systems on which they can test their compounds. The results could give them a good indication of which ones might be toxic or work in individual patients. They could run multiple experiments at once, potentially speeding R&D up significantly.

For pharma companies, it’s a no brainer, especially with 23andMe customers at the ready, willing to supply more data in the hopes of finding a cure for the condition that ails them or their relatives.

As 23andMe co-founder Linda Avey put it on Twitter:

That economic value, though, will accrue to 23andMe.

The company’s terms of service clearly state 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.”

Daniela Hernandez is a senior writer at Fusion. She likes science, robots, pugs, and coffee.