People interested in donating their own genomic data to science should check out a new standard informed consent form that will let them route some or all of their genetic information to researchers. The goal of the Portable Legal Consent is to create a shared, open-source repository of that data.
The ability to give such gene data to science at large has been a subject of debate lately. Often a person’s medical data is used for one specific research purpose but is off limits for anything else. In this big data era where there are more tools to sort and analyse huge amounts of information, the accessibility of a big genomic data pool for many projects could be a boon to researchers looking to cure diseases or just better understand human biology.
Donating data now is harder than you think
John Wilbanks, the senior fellow at the Ewing Marion Kauffman Foundation who is spearheading this effort said via email:
Right now, if you want to donate your health data, it’s actually kind of hard to make sure that it is usable. Even if you were to post your data, unless you had undergone an informed consent process to make sure you understood what you were doing (in a regulatory sense) then researchers are likely to stay away from it. Informed consent and research “protocols” have to be approved by an Institutional Review Board (IRB) that is certified by the government before they are considered to be acceptable.
The idea behind Wilbanks’ Consent to Research project is to let people put their anonymized data into a creative commons-type license for broad use by medical researchers. In return, they get assurances that their data will be made available for ethical purposes. Sage Bionetworks, a Seattle-based non-profit research organization, will initially collect and manage the data and make it broadly available.
“Typically, researchers collect data that is tied to one study, which can’t be reused or reintegrated into other studies, because they don’t get consent for that kind of reuse. This essentially blocks network effects in health data. But it’s easier to go straight to the public than to get the researchers to change their practices,” Wilbanks said.
With this standardized informed consent system, people with data they want to share can go through the process once, and then upload as much — or as little — as they want. ”There’s also some technology to de-identify the data (although we make it clear that no one can guarantee anonymity in an age of strong mathematics and data integration) as well as to syndicate the data into a compute environment where researchers can access it,” he said.
The Portable Legal Consent form got ethics approval late last week from the Western Institutional Review board. Interested donors can sign up at the Consent to Research website. (There’s more on the project at The Economist.)
Back in December, I wrote about this issue after there was a public plea for people to donate their medical data to science. The argument was that the free flow of such data would do much to further the cause of human wellness.
Do merits outweigh possible abuses?
Still, the notion of turning over your genomic roadmap to research is tricky. Despite wide agreement that such data could help researchers crack the code of diseases, many people still worry about privacy issues and potential abuses of that data. And, some people think that they should share in any profits deriving from breakthroughs medical researchers make by using their data, for example.
The key to making the sharing of private genomic and medical information palatable is that the originators of that data (you, me, that guy over there) need to know what they’re getting into and there needs to be transparency about how researchers will use this data. This new standardized form looks like a good first step, at least for the first part of that equation.