The consumer genome. You’ll hear that phrase enough the next couple years that it will gain both the weight and lightness of inevitability.
It will feel inevitable because, as we’ve been hearing for years now, DNA is just another long string of crunchable, malleable, transportable code, so it’s just the next destination for the digital train we’re all riding at breakneck speed, accompanied by our ever-growing and ever-more accessible data clouds.
Most other information in this age has wound up in a paradoxical state: both decentralized—available in practically every corner of the Earth—yet also densely concentrated on the server farms of the few, who put it to uses that range from national security to ad targeting.
And so, perhaps, with your genomes, too. You will know your own DNA intimately, but a handful of entities want to have yours, and millions of others’, at their fingertips. A few have gotten a good head start.
What will it be worth? In vast pools, genomic data could unlock health secrets and change the way societies practice medical care. If indeed those much-promised benefits arrive, they will be measured in lives and years, and also in financial units: dollars, shares, earnings, savings.
This raises all kinds of questions for individual citizens, healthy, ill, or somewhere in between. What is the risk of sharing our data, and is it greater than the nebulous future rewards?
John Wilbanks, chief commons officer at Sage Bionetworks in Seattle, has thought about and planned for the sharing of scientific data as much as anyone in the biomedical field. I asked him if consumers should benefit financially from sharing their genomes.
“It’s hard to argue that [they] shouldn’t,” he wrote me in an e-mail last week. “But I don’t really like the idea that our genomes are somehow a primarily economic asset. I can also see a world emerging where a group of individuals can pool their data into something like a land trust or a credit union, and collectively decide how to manage it, including for money. But the last thing I want is to see a world akin to our consumer data world, one where we have no agency, no transparency, and we get ambiguously free stuff in return for something that is deeply human—our genes.”
San Francisco-based Invitae is one of those entities rushing into the consumer genome. Let’s dive more deeply into how it plans to proceed. Five years ago, it started as a subsidiary of Genomic Health (NASDAQ: GHDX), the first company to commercialize a genetic test to better characterize breast tumors.
It spun out independently, with backing from Genomic Health, in 2012. Unlike its parent, Invitae doesn’t want to create new tests based on research from its labs. It wants to be the great aggregator of what CEO Randy Scott—who founded Genomic Health—calls “generic genetics” into a “one stop shop” for tests. “We are not bringing in new tests, we are simply replacing at lower prices things that [people] are currently paying for,” he says.
By the end of the year, Invitae says it will be able to test for more than 600 genes implicated in inherited diseases. That’s 125 pre-packaged tests for diseases across five therapeutic areas. Only doctors can order the tests, and they can also mix and match genes from the menu to create customized tests. If insurers pay for the tests, Invitae charges either $1,500 or $950 each.
It has barely begun to sell those tests, however—and had only $3 million in revenue the first half of 2015—yet Scott is already talking about what lies beyond. At first, making a few hundred dollars above cost for every blood sample that comes in will be “enough to support the company,” he says.
“That might not look like a great business,” says Scott. But eventually the tests will be the loss leaders that ferry into the company what’s truly valuable: the genetic information of thousands upon thousands of people.
The first business beyond selling tests is what Scott calls “genome management”—storing and analyzing a person’s genomic information over his or her lifetime. One way to make money from that is to provide genetic counseling services direct to patients, which Scott says could start before the end of the year. The company already employs counselors to advise doctors who order tests as part of the baseline testing price. But Invitae will encourage more add-on genetic counseling … Next Page »