Data shared might, for example, be traced back to their owner by sophisticated search algorithms. Or some malevolent hacker might expose them to the world. Those squeamish about sharing their personal information should probably not sign the consent form, Mr Wilbanks counsels. But those who believe the benefit of doing so—accelerating the pace of medical research—outweighs the risks can start to pool their own data next month on a special website: weconsent.us.
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 trialorganisers 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 itattractive. And that would enable research of a sort that is now impossible, by opening up the field of quantifiable social science.
