Thursday, May 3, 2012

Portable Legal Consent

While I wait for a couple of publishing-related things to happen, I've been catching up on my reading.

This week's Economist has an article, Consent 2.0, on Sage Bionetworks' Portable Legal Consent, which aims to make genomic data available to researchers in massive "de-indentified" chunks.

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.
This is the first step in an open-data movement. In terms of genomics research, it could be compared to software's open-source movement. It will increase the long-term value of the data--making it useful in ways perhaps the original investigators hadn't imagined. Absolutely a Good Thing. I hope Sage Networks can figure out a way to extend this idea outside the US. Big data is useful data.

I'll look forward to seeing how this goes.
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