With advances in data collection, information technology, and data science in the 21st century, the prospects of targeted disease prevention and precision healthcare have become a reality in many parts of the world. The principle on which they rely is simple and obvious: namely, that the effectiveness with which we can treat any one person depends upon the quantity, quality, and variety of data we can obtain from a great number of other people.
It is reasonable to think that people want to enjoy the best attainable standard of healthcare. They might also reasonably believe that achieving this depends on people like them sharing data for use in research. And yet not everyone arrives at the conclusion that they themselves should share data. And thus the promise of improved, data-driven health care may be delayed, unevenly kept or unfulfilled. So we ask: what are the obstacles that inhibit data-sharing and how can we move from this paradox, which inhibits the promise of precision medicine, to a policy for action all can accept?
The reasons that data-sharing may be limited in practice are partly to do with infrastructural inertia and partly to do with moral conditions. Much of the infrastructural inertia rests in the way that healthcare and biomedical research have been separated historically. These separations run through staff, institutions and governance systems.
The moral conditions have to do with considerations of privacy and public interest. Many of the data we are talking about are personal. They are personal in the sense of being about a particular individual, but also in the sense of having special value to that individual: some contain information that may be regarded as sensitive or consequential, disclosed only in the context of intimate personal relationships or professional doctor-patient relationships. Their use in biomedical research challenges these norms. Information governance is a crucial part of trustworthy systems: we should have credible assurances that our systems can manage information in the way that we agree they should do so. But “how they should do so” – the norms governing data use – also needs to be rethought in response to the potential that personal data now have to advance biomedical research.