Health authorities must consider the moral issues of collecting and linking data in projects such as the controversial Care.data scheme, an independent medical ethics body has warned.
A report from the Nuffield Council on Bioethics singled out recent health initiatives such as Care.data as raising ethical questions surrounding the use of data.
Last month El Reg discovered that hundreds of thousands of people opting out of the GP data extraction scheme may not be approached for cancer screening programmes.
The Nuffield report, titled The collection, linking and use of data in biomedical research and health care: ethical issues research (16 page colour PDF) made a series of recommendations for "big data" health projects.
It said penalties, including imprisonment, should be introduced for the deliberate misuse of data, whether or not it results in harm to individuals.
The report said there should be complete audit trails of everyone who has been given access to the data, and the purposes to which they have been put. These should be made available to all individuals concerned in a timely fashion on request.
Michael Parker, professor of Bioethics at the University of Oxford, said: “Compliance with the law is not enough to guarantee that a particular use of data is morally acceptable – clearly not everything that can be done should be done."
He said people should have a say in how their data is used, by whom and for what purposes, "so that the terms of any project respect the preferences and expectations of all involved."
Susan Wallace, a member of the body's working party, said: “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.”
She said: “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.” ®