A better way of signing up for studies of your genes – Published on The Economist, April 28, 2012.
In an age where people promiscuously post personal data on the web and regularly click “I agree” to reams of legalese they have never read, news of yet another electronic consent form might seem like a big yawn. But for the future of genomics-related research the Portable Legal Consent, to be announced shortly by Sage Bionetworks, a non-profit research organisation based in Seattle, is anything but mundane. Indeed, by reversing the normal way consent to use personal data is acquired from patients in clinical trials, it could spell a new relationship between scientists and the human subjects of their research, with potential benefits that extend well beyond genomics.
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The heart of Portable Legal Consent is the notion that anyone who signs up for a clinical trial, or simply has his genome read in order to anticipate the risk of disease, should easily be able to share his genomic and health data not just with that research group or company, but with all scientists who are prepared in turn to accept some sensible rules about how they may use the data. The main one of these is that the results of investigations which include such “open source” data must, themselves, be freely and publicly available. In much the same vein as the open-source-software movement, the purpose of this is to increase the long-term value of the data, by allowing them to be reused in ways that may not even have been conceived of at the time they were collected.
That approach contrasts with today’s system of secretive data silos for particular studies of specific diseases. Patients sometimes discover that they have even signed away their rights to see their own data … //
… To make sure consent is truly informed, Mr Wilbanks and his team have gone to great lengths to explain the consequences to signatories. There is an online tutorial that cannot be bypassed. Uploaded information may be removed from the database on request, at any time, but the provider is clearly warned that it may have already found its way into places from which it cannot be erased.
Sage Bionetworks hopes 25,000 people will sign up in the first year, either because trial organisers choose to adopt the protocol or volunteers insist on it. But to be really useful, the database would need to grow to ten or 100 times this size. Mr Wilbanks has therefore started discussions with several firms that offer commercial genetic tests for a range of diseases. It is also linking up with PatientsLikeMe, an organisation that helps almost 150,000 people find those with similar illnesses, in order to share their experiences.
Are we all agreed?
So far, the Portable Legal Consent is valid only in America, although Sage Bionetworks is looking at ways of adapting it to fit the legal frameworks of China and the European Union. How quickly the idea will catch on remains to be seen. But if it does, other sorts of researchers who rely on gathering personal data—for example in sociology or in tracking energy use in homes—may find it attractive. And that would enable research of a sort that is now impossible, by opening up the field of quantifiable social science. (full text).
Link: Preacher supporting same sex marriage ban encourages violent punishment of LGBT kids, on raw story, by David Ferguson, May 2, 2012.