The possibilities and dangers -closing in on us- of “pseudonymized” health records central databases, with police backdoors, scientists, insurers, and other third parties authorized to mine the “care.data” are exposed in this guardian article “Police will have backdoor access to health records despite opt-out”, by Randeep Ramesh.
This puts into light an architecture of biopower (as conceptualized by french philosopher Michel Foucault) where control over people’s destinies can technically and easily be exerted via the subjugation of their own bodies.
Let’s not forget that today, people’s personal health informations ALREADY are used against them and negatively affect their fundamental freedoms, for example of movement and/or economic interaction, whether it is a matter of crossing a border when you’re HIV+ and/or getting/keeping a job when you’re a smoker.
Overall it is a particularly aching reminder of the importance of protecting the personal data of the weak, in that it concerns the very place where people are the most vulnerable (that’s when we go to a doctor, right?), and a place that is still considered a safety and confidentiality haven – with privacy being a component of good care.
“PRIVACY FOR THE WEAK, TRANSPARENCY FOR THE POWERFUL”
as advocated and enabled by Wikileaks and its founder Julian Assange,
really sounds like the right line.
Phil Booth of medConfidential, which campaigns on medical privacy, told the Guardian: “This is precisely the danger when you create a giant database of highly sensitive information about people – all sorts of other people want to go rifling through it, including the government.” There’s always another good reason to go digging, but no one thinks of the catastrophic breach of trust this represents.”
“The lack of independent oversight and transparency is what’s most worrying. People trust their GP, but who’s heard of the Health and Social Care Information Centre or the four people who sign off on access to all our medical records?”