I started working on the legal and technical systems to allow people to donate their data to science in late 2011. The project is called Portable Legal Consent (PLC), because it’s portable to any data you have about yourself, with one consent.
With a lot of pro bono and low bono help, PLC has resulted in an online environment for informed consent, a traditional consent form, and technology to both gather user-donated data, de-identify it, and syndicate it to computational research environments. PLC has received positive formal review from bioethicists as well as from an Institutional Review Board.
Our first study begins in May 2012. We expect many more.
The main project website is http://weconsent.us - spread the word.
If you’re interested in ur-history, visit the 2011 Sage Congress Group D pages, which is where this project was born and continues to draw its inspiration.