RACHEL MARTIN, HOST:
Companies buy and sell medical information all the time. It is a multibillion-dollar market, but now there's a growing movement to find ways for people to get more control over these transactions or even to profit from them. NPR's Richard Harris reports on a new company that's trying to do just that.
RICHARD HARRIS, BYLINE: The company is the latest idea to flow from the lab of George Church, a pioneering geneticist at Harvard. He says he's trying to turn the current genome business on its head. Outfits like 23andMe offer an easy way for people to learn about their genetic traits.
GEORGE CHURCH: The model has been, we own your genome. You don't need to be bothered by the complex details of dealing with companies or dealing with genomic information. We're going to handle that for you. It's very paternalistic.
HARRIS: Church's new company, called Nebula Genomics, will sequence your entire genome, not just the valuable snippets that other companies home in on. And you retain full ownership.
CHURCH: In this case, everything is private information stored on your computer. It could be encrypted even so you don't know what's in it.
HARRIS: Participants fill out questionnaires about their health and lifestyle. Researchers and drug companies interested in, say, looking at the genomes of people with diabetes can contact Nebula, which can pick out the genomes of everyone who has identified as diabetic and is willing to share with the folks who want to see it.
CHURCH: They don't have direct access to your medical records or your genome.
HARRIS: Because Nebula serves as the broker. If this business works the way Church hopes it will, the companies interested in your genetic data will actually pay to have your genome sequenced. Church says, these days, that costs about a thousand dollars. You can fill out a questionnaire about yourself for free and hope that a company will take an interest in you and your genome. Or you can pay something upfront to get a low-fidelity genome scan.
CHURCH: Ninety-nine bucks will get you a little bit of genetic information. But to get the full thing, they'll have to be interested in either your traits or your genome or both.
HARRIS: You might even be able to make a profit if you have potentially interesting genes.
CHURCH: Probably anywhere from $10 to $10,000 if you're some exceptional research resource.
HARRIS: But Stanford Law professor Hank Greely says don't get your hopes up either for major health revelations or cash flow from Nebula and other companies promoting similar ideas.
HANK GREELY: I think anybody who expects to make money more than pocket change out of his or her genome is in for a bad surprise. But the idea of having more control over who uses your genome I think is a good one and should be explored.
HARRIS: Nebula and companies like this offering patient ownership of their own data are just getting started. So there's no telling which will succeed and which will fizzle. Richard Harris, NPR News.
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