Every day, people around the world subject themselves to tests, contributing data for research studies, clinical diagnoses, and care. But should donors have access to their raw data? What right, for example, should a donor have to download the raw output from a genetic screen of her saliva? As technology allows more people to access more information and makes tests once found only in expensive laboratories available and affordable from companies, should we worry about information overload triggering uninformed decisions from consumers? Or is more data always a good thing?
John Wilbanks is the Chief Commons Officer at Sage Bionetworks, and focuses on issues facing personal health data access, reuse, and donation.
Barbara Prainsack is a Reader (Associate Professor) at the Department of Social Science, Health and Medicine at King’s College London. Her work focuses on the societal, regulatory and ethical dimensions of molecular bioscience in medicine and forensics.
Jeantine Lunshof is Marie Curie Fellow at Harvard Medical School and Assistant Professor at the Section Molecular Cell Physiology of VU University Amsterdam. Her work focuses on conceptual and normative issues related to systems and synthetic biology.
Brad Wible is the senior commentary editor for Science.
Missed the chat? It is available here.