I'm thrilled to report the publication in Science today of "Raw Personal Data: Providing Access", a Policy Forum opinion piece by Jeantine Lunshof, George Church, and Barbara Prainsack. As the ethics advisor to the Personal Genome Project, Jeantine, along with George, has pioneered our "open consent" model for public data sharing. With this piece, Lunshof et al. address the topic of sharing data with participants themselves. They advocate that participants deserve access to raw data in any research and clinical setting, to establish fairness and reciprocity in research and any other context where data are handed over.
This vision is very much in line with the Personal Genome Project's work since 2005, and more recently with our public comments on the NIH draft Genomic Data Sharing Policy last November and our recently funded Open Humans Network. Data relevant to understanding human health and biology is often very personal, very identifiable, and – as a result – difficult to share. Participant-mediated data sharing is a way to enable open human data.
As Lunshof, Church, and Prainsack point out, modern information technology should facilitate data sharing with participants. It is understandable that such a model has been impractical in the past, but the technology is now ready. To make it a reality, we need to see our expectations change regarding how research studies should operate.
Lunshof et al. make a careful distinction between "access to data" and "return of findings" – the first is the raw research data alone, while the latter involves interpretation of that data (a process sometimes requiring instrument certification or clinical expertise). Their piece challenges researchers to treat access to raw research data as a separate issue from its interpretation; they call for researchers to grant raw data access and thereby promote participant agency, establishing a more fair and reciprocal relationship.