TMI? Licensing Your Personal Genome to Scientists
A database under development lets people license their genomes, electronic medical records and other future digital data to scientists. Scientists can then use the data in studies.
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In five to 10 years, personal genome sequencing will cost less than $100 and people will have access to their medical records online, which means they'll have more data about their health than ever.
At least that's what open-access advocate John Wilbanks thinks. One consequence may be that people will have more control over where their personal data go.
Wilbanks is working on one project to give people unusual rights over their medical data. He's creating a repository where people can donate their genomes, electronic medical records and even smartphone-recorded personal data to clinical studies. Legally, donors license the rights to their data to researchers – a first, as the rights to the data of study volunteers usually belong to the study. It's informed consent for the individual-focused, digital age. [New Machine Makes $1,000 Human Genome Scans a Reality ]
Wilbanks, who has worked at various Internet research institutes, hopes his database will accelerate medical discoveries by making it easy for any scientist to access a database full of donated medical data. "The real goal of this is that we want companies, researchers, crazy people — we want everyone to be able to take a shot at doing disease research," he said. The more people there are working on a problem, the more creative solutions people find and the faster problems get solved, he believes.
His Portable Legal Consent system isn't taking volunteers now, but will start recruiting for its first trial run in a few weeks, Wilbanks told InnovationNewsDaily. At that time, volunteers can sign up at Weconsent.us. Like medical consent forms that study volunteers sign now, the website will take visitors through a series of questions and quizzes to ensure people know what they're donating and what the risks are. The consent process is designed so people can easily quit if they change their minds as they learn more, Wilbanks said.
A few things in the Portal Legal Consent form differ from the usual study volunteer paperwork. For one, people can specify if they want their data used in research that will get published in journals that make their articles available for free, instead of journals that make readers pay for articles. That way, people can get a copy of studies their data were used in, Wilbanks said.
Another difference is that users can withdraw their data from the repository at any time. They can't withdraw from studies their data have already been used in, however. [World Repository of Human Genetics Now Hosted by Amazon ]
After clicking through the consent form, people upload their data. Right now, the system takes results from personal genome services such as 23andMe and Medicare data in the U.S. government's Blue Button format. Wilbanks is working on building technology that lets people upload data from personal health devices, such as pedometers, and from health apps.
The data are stripped of identifiers, such as names and addresses. The Portable Legal Consent system will set up barriers to prevent people from going in and matching names to genomes, but its makers can't guarantee their barriers are fail-proof. "We don't know all the risks and we don't know how easy it'll be to re-identify," Wilbanks said. "You are, as a part of the process, running the risk of being identified."
People should sign up only if they really want to, he said. He imagines science enthusiasts and people with genetic diseases they want studied might be especially interested.
As long as he depends on volunteers, however, Wilbanks will almost certainly get a biased sample. People must have genetic data in the first place in order to donate it. Right now, a 23andMe genetic test costs $300 and the majority of its customers are wealthier and better educated than average. "People who can afford Apple products," Wilbanks said, jokingly. To gather a more representative sample of people — the kind of sample scientists want, to make sure their studies apply broadly — Portable Legal Consent wants to partner with disease foundations and medical centers. The partnerships should make it easy for members of those foundations to donate their data.
Wilbanks' vision is certainly forward-looking. Few people today have digital data they can license out, even if they wanted to. Wilbanks decided to start his system early, however, to make sure it stays free.
"By the time everyone has data, everyone's going to be racing to monetize it, not share it," he said. "Open systems are easier to implement before anyone's watching."