A startup genetics company says it's now offering to sequence your entire genome at no cost to you. In fact, you would own the data and may even be able to make money off it.
Nebula Genomics, created by the prominent Harvard geneticist George Church and his lab colleagues, seeks to upend the usual way genomic information is owned.
Today, companies like 23andMe make some of their money by scanning your genetic patterns and then selling that information to drug companies for use in research. (You choose whether to opt in.)
Church says his new enterprise leaves ownership and control of the data in an individual's hands. And the genomic analysis Nebula will perform is much more detailed than what 23andMe and similar companies offer.
Nebula will do a full genome sequence, rather than a snapshot of key gene variants. That wider range of genetic information would makes the data more appealing to biologists and biotech and pharmaceutical companies.
Generating a full sequence costs about $1,000, but the price continues to tumble, Church says. Nebula's business model anticipates that companies and research organizations would be willing to pay for the cost of sequencing, if in exchange they also get some key medical information about the person involved. If that proves to be the case, people would get their genetic information at no cost.
The company hopes most people will pony up $99 to get the process going. "Ninety-nine bucks will get you a little bit of genetic information, but to get the full thing, [companies or researchers] will have to be interested in either your traits or your genome or both," Church says.
In fact, people might even make money on the deal, especially if they have an unusual trait that a company wants to study. Those payments could be "probably anywhere from $10 to $10,000, if you're some exceptional research resource," Church says.
And it's not just people with diseases who could be of value to pharmaceutical companies. "Even people who seem to be healthy, they might be super healthy and not even know it," he says.
Church's approach is part of a trend that's pushing back against the multibillion-dollar industry to buy and sell medical information. Right now, companies reap those profits and control the data.
"Patients should have the right to decide for themselves whether they want to share their medical data, and, if so, with whom," Adam Tanner, at Harvard's Institute for Quantitative Social Science, says in an email. "Efforts to empower people to fine-tune the fate of their medical information are a step in the right direction." Tanner, author of a book on the subject of the trade in medical data, isn't involved in Nebula.
The current system is "very paternalistic," Church says. He aims to give people complete control over who gets access to their data, and let individuals decide whether or not to sell the information, and to whom.
"In this case, everything is private information, stored on your computer or a computer you designate," Church says. It can be encrypted so nobody can read it, even you, if that's what you want.
Drug companies interested in studying, say, diabetes patients would ask Nebula to identify people in their system who have the disease. Nebula would then identify those individuals by launching an encrypted search of participants.
People who have indicated they're interested in selling their genetic data to a company would then be given the option of granting access to the information, along with medical data that person has designated.
Other companies are also springing up to help people control — and potentially profit from — their medical data. EncrypGen lets people offer up their genetic data, though customers have to provide their own DNA sequence. Hu-manity.co is also trying to establish a system in which people can sell their medical data to pharmaceutical companies.
Church, a genetics pioneer, has also developed other business models before. The Personal Genome Project allows people to donate their genome and health data to help speed medical research. Veritas Genetics charges $1,000 to produce a complete genome, and provides the resulting medical information to people along with genetic counseling.
Church has been trying to accelerate research into health and disease through these efforts. Jason Bobe, an associate professor in the genetics department at the Icahn School of Medicine at Mount Sinai, says one bottleneck has been getting people to participate in research. (Bobe has collaborated with Church but isn't involved in Nebula Genomics.)
With more control over personal data, and the possibility of a personal financial return, "I'm hopeful that this model will actually attract people, where historically people have been very disinterested in participation in research."
You can reach Richard Harris at firstname.lastname@example.org.
A 23andMe spokesman said customers must opt in to allow their data to be shared, rather than opting out from default sharing, as the initial version of this article said.
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.
(SOUNDBITE OF JACOO'S "LONGING") Transcript provided by NPR, Copyright NPR.