Report suggests public participation should be at the heart of big data projects

Public participation should be at the heart of big data projects in health care and biomedical research, according to the findings of a new report by the Nuffield Council on Bioethics.

The report calls for greater transparency about how people’s data are used, and recommends the introduction of criminal penalties in the UK for the misuse of data.

“Data is increasingly seen as a commodity to exploit and there are often strong political, economic or scientific interests that try to set the terms of a data project prior to any wider public debate”, says Dr Susan Wallace, Member of the Nuffield Council on Bioethics Working Party and Lecturer of Population and Public Health Sciences, University of Leicester. “We say that any data project should first take steps to find out how people expect their data to be used and engage with those expectations through a process of continued participation and review.”

The report warns that by not taking into account people’s preferences and values, projects that could deliver significant public good may continue to be challenged and fail to secure public confidence.

The report makes a number of recommendations including that any data project should produce a clear, public statement about how data will be used, who will have access to it, and should continue to report on how it has, in fact, been used.