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A Say

The public should have a greater role in determining how their health data — from medical history to genomic information to lifestyle data — are used in big health studies, argues Martin Richards, the chair of the UK Nuffield Council on Bioethics Working Party and an emeritus professor at the University of Cambridge, in a New Scientist op-ed.

In the UK, the government program aims to develop a centralized data repository to share data to both improve care and inform research, but the scheme has been met with resistance. Richards notes that much of that stems from worries regarding data misuse, especially the sharing of such personal information with pharmaceutical or health insurance companies.

He and the Nuffield Council suggest that these frameworks better take people's expectations into account, track how the data is used, and levy stiff penalties for misuse.

"Only in this way will we build the public involvement and trust that is necessary to ensure that the benefits of personal health data are not squandered," Richards says.

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