My TED Global talk from yesterday has generated attention, as I’d hoped.
I want to clear up one point from an otherwise excellent summary of the talk from the TED blog.
The title of the talk could well have been the “unintended consequences” of informed consent. I’m not criticizing the idea that we should be informed before we join medical studies - indeed, in the talk, I note that this is a beautiful invention of society, something we should be proud of.
My problem is that we’ve joined the idea of being informed with an idea of privacy that is creating a drag on innovation. That prevents reuse of data without extensive permissions. That makes it hard to donate your data to science.
Consent to Research is about untangling the two. It’s built on informed consent, not an attack on it. Because the reality is that privacy and consent have become entwined, and are used by researchers who are competitive, or just plain lazy or arrogant about our ability to understand data about our own bodies, to keep their data secret.
Just as free software is a hack built on copyright, open consent is a hack built on informed consent. Simple as that.