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.jpg): Failed to open stream: No such file or directory in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 117 Med+Health+Care+Philos
2016 ; 19
(2
): 177-90
Nephropedia Template TP
gab.com Text
Twit Text FOAVip
Twit Text #
English Wikipedia
"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
#MMPMID26280642
Sterckx S
; Rakic V
; Cockbain J
; Borry P
Med Health Care Philos
2016[Jun]; 19
(2
): 177-90
PMID26280642
show ga
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.