"You hoped we would sleep walk into accepting the collection of our data": controversies surrounding the UK care.data scheme and their wider relevance for biomedical research.
An 'Information Centre' has recently been established by law which has the power to collect, collate and provide access to the medical information for all patients treated by the National Health Service in England, whether in hospitals or by General Practitioners. This so-called 'care.data' scheme has given rise to major and ongoing controversies. We will sketch the background of the scheme and look at the responses it has elicited from citizens and medical professionals. In Autumn 2013, NHS England set up a care.data website where citizens could record their concerns regarding the collection of health-related data by the Information Centre. We have reviewed all the comments on this website up until June 2015. We have also analysed the readers' comments on the coverage of the care.data scheme in one of the main national UK newspapers. When discussing the responses of citizens, we will make a distinction between the problems that citizens detect and the solutions they propose. The solutions that are being perceived as the most relevant ones can be summarized as follows: citizens wish to further the common good without being manipulated into doing it, while at the same time being safeguarded against various abuses. The issue of trust turns out to figure prominently. Our analysis of reactions to the scheme in no way pretends to be exhaustive, yet it provides various relevant insights into the concerns identified by citizens as well as medical professionals. These concerns, moreover, have a more general relevance in relation to other contexts of medical data-mining as well as biobank research. Our analysis also offers important pointers as to how those concerns might be addressed.
Department of Philosophy and Moral Sciences, Bioethics Institute Ghent, Ghent University, Blandijnberg 2, 9000, Ghent, Belgium. sigrid.sterckx@ugent.be.
Sigrid
http://orcid.org/0000-0003-1018-1127
S
Sterckx
Center for the Study of Bioethics, University of Belgrade, Belgrade, Serbia.
Vojin
V
Rakic
European Patent Attorney, Ghent, Belgium.
Julian
J
Cockbain
Centre for Biomedical Ethics and Law, Faculty of Medicine, KU Leuven, Leuven, Belgium.
Pascal
P
Borry
D035843:Biomedical Research / Q000941:ethics; D003219:Confidentiality; D003625:Data Collection / Q000941:ethics / Q000379:methods / Q000592:standards; D057286:Electronic Health Records; D006801:Humans; D006113:United Kingdom
Autonomy; Big data; Care.data; Ethics; Health and Social Care Information Centre; Health research; Medical records; National Health Service England; Privacy; Trust