Personal data harvested from GP and hospital records are shortly to be made available for sale in England. Today’s Guardian report highlights concerns of privacy advocates that data will be available for purchase by not only medical researchers but by organisations with wider commercial interests in healthcare provision and insurance.
The Guardian quotes NHS England’s way of describing one of the key aims of the care.data project: “[to] drive economic growth by making England the default location for world-class health services research”.
There are multiple questions of which the following are but a few:
- At a fundamental level, do English people wish to be turned into data-commodities, marketable around the world?
- How are important lines of medical research (requiring mass data) made scientifically and economically possible in a context of limited financial resources?
- Quite how confidential are data that are not fully anonymised when organizations external to direct patient care may have copious information already on identified individuals?
- What level of knowledge about medical data-gathering does an English person require (and is provided with) to make a truly informed decision to opt-out from a scheme that by default assumes participation consent?
Of course it could be argued that many of us (and not just English people) have already been commodified and marketed by our governments and private corporations to the highest bidders. However, our medical history and our possible medical future is perhaps qualitatively different given the potential for discrimination.
[The BMA guidance to GPs includes this leaflet.]