We like to share. But what what does it mean to share data about our health?

All of us at Fabricatorz are well-practiced in the means and ways of sharing our creative output with everyone. Often this takes the form of selectively sharing certain rights to our creations, or even dedicating our work entirely to the public domain. We reason that our future interests (and yours!) are always better served by sharing what we do.

Sharing is one of the core principles that we wish to extend to greater aspects of our lives. However, there are certain domains of information where the legal and technological means of sharing are as yet ill-defined or non-existent.

One such domain concerns our health. Data about our health and genomics are the most intimate of personal details we can describe, and yet could prove to be the most useful thing we could ever choose to share about ourselves.

Anyone who has ever participated in a clinical study in the name of science has had to give consent to the researchers to use his or her data. However, there is as yet no easy way for that individual in the future to give any qualified researcher access to his or her data collected in the original study. This hampers your ability to share your own data, and consequently slows the progress of medical science itself.

A new project, Consent to Research, currently in a pilot phase, aims to remedy this problem by building a platform for gathering user-contributed data about health and genomics and sharing it with qualified research scientists. Consent to Research was conceived and is run by John Wilbanks.

Fabricatorz were contracted to build an alpha testing system as a proof of concept for the Consent to Research project (CtR). Our team has worked quickly and quietly to build and deploy CtR using Aiki Framework, and are proud to announce that the alpha site is live.

If you're interested in the future of open medical data science, or would just like to become an alpha tester, the new site is open and ready for testing at: consenttoresearch.us.

One of my duties on the Fabricatorz client project, AcaWiki, is to present when possible about the project. We are supporters of AcaWiki and are actively growing the academic summaries and community. Below is a presentation I made at FISL12 in Porto Alegre, that provides an overview of the problems the AcaWiki project addresses, and the solutions its provides. Its very general, and for explaining the project's drive and goals to get more people involved. Please do give your feedback and use the slides freely:

(Use your keyboard arrows or click on the image to advance the slides. You need the Droid Serif font to properly view the slides.)