"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."
Awesome! I've been writing about consent and consensus as part of my #attentioneconomy series, and I'm happy to see the reworking of consent as part of the dialogue.
The discussion here seems to be dramatically limited in scope; the issue is part of the move for Portable Legal Consent in genomics research. You can read more about it here:
The website includes a link to an endorsement written in Nature Genetics:
This is very interesting stuff!
A.J. Cann originally shared this post:
The Only Way Is Ethics
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.
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…