Opening Up Access by Madeleine Ball
March 3, 2016
From the Quantified Self Public Health Symposium
The Open Humans project is one of the most radical data access efforts underway today, both exemplifying new modes of access and also revealing, by contrast with conventional research and data protection systems, how much work remains to be done in our field. Madeleine Ball, co-founder of Open Humans and Director of Research for the Harvard Personal Genomes Project explains that the main premise of Open Humans is centered on the idea that researchers should freely share data from their studies back to the participants; and that participants should be able to use a well-designed, convenient, open platform to donate their data to science without de-identification. Because Open Humans is not premised on anonymized data, it is driving toward a new relationship between participants and scientists in which with both sides have names, and must communicate, negotiate, and share responsibility. “It’s more interesting than simply allowing broad sharing of identifiable data, because it enables ongoing connections around that data so new researchers can work with that person.”
Watch Madeleine’s video on Medium.