Re:Project Tango
by Silhouette on Friday February 21, 2014 @01:27AM
(#7275705)
Privacy concerns around medical records have prevented any central database of them from being built, and thus prevented us from saving all of the lives that could be saved by analyzing that data.
That's a very one-sided view. Just this week, the latest attempt to do this in the UK, the care.data programme, essentially became so politically toxic that it's dead.
This happened for a number of reasons. Some of them were just incompetence, like claiming everyone would receive a leaflet explaining the proposals and the right to opt out, and then finding that not only was your leaflet heavily criticised by medical and IT professionals for being woefully misleading, but when surveyed about 2/3 of adults reported not having seen it anyway. That was the credibility of the programme operators you saw falling down the sinkhole.
However, other reasons for objecting would have stood up even if everyone were fully informed. The data in question wasn't actually going to be available to clinicians like doctors and nurses who might find it useful when providing care. And contrary to the laudible-sounding goals that some medical professionals have suggested, much like those you have been advocating yourself in this discussion, it also wasn't going to be restricted to people like medical researchers.
In fact -- and it is now well-established, beyond-any-doubt, clear-as-day fact -- the data could never have been protected to the extent that was claimed (numerous qualified people have debunked the effectiveness of the claimed pseudonymisation), and the proposed rules and "safeguards" for who would have access to the data and for what purposes weren't even close to restricting it to legitimate medical research of the kind you describe. Those advocating the scheme at government level have once again demonstrated a fundamental lack of understanding of the implications of this kind of technology. There are a few other questions that seem to have been brushed under the carpet, too, like how opting out would supposedly mean your information never physically left your GP's systems, yet paradoxically there were circumstances discussed a couple of weeks ago where some organisations, like police and security services, would be able to access the data centrally via the new system anyway.
The trouble with many of these privacy issues we've been discussing recently -- whether it's Google-esque creepy mass surveillance, or the NHS plans to consolidate and share particularly sensitive data about individuals, or governments monitoring surveillance networks -- is that they are all cases of Pandora's box. Once you've compelled people to give up privacy and they've been entered into someone's database, that data is out there, and it's subject to redistribution and repurposing at any future time, with or without the blessing of the data subjects. Our privacy laws are dangerously underweight and already fail to balance the heavyweight capabilities of modern technologies. Until that gets fixed -- and I mean fixed in the sense that privacy laws are actually enforced and respected at government level -- the only reasonable conclusion is that we should err on the side of caution with giving up personal data, and challenge every attempt to push the boundaries to make sure it's justified.
That's a very one-sided view. Just this week, the latest attempt to do this in the UK, the care.data programme, essentially became so politically toxic that it's dead.
This happened for a number of reasons. Some of them were just incompetence, like claiming everyone would receive a leaflet explaining the proposals and the right to opt out, and then finding that not only was your leaflet heavily criticised by medical and IT professionals for being woefully misleading, but when surveyed about 2/3 of adults reported not having seen it anyway. That was the credibility of the programme operators you saw falling down the sinkhole.
However, other reasons for objecting would have stood up even if everyone were fully informed. The data in question wasn't actually going to be available to clinicians like doctors and nurses who might find it useful when providing care. And contrary to the laudible-sounding goals that some medical professionals have suggested, much like those you have been advocating yourself in this discussion, it also wasn't going to be restricted to people like medical researchers.
In fact -- and it is now well-established, beyond-any-doubt, clear-as-day fact -- the data could never have been protected to the extent that was claimed (numerous qualified people have debunked the effectiveness of the claimed pseudonymisation), and the proposed rules and "safeguards" for who would have access to the data and for what purposes weren't even close to restricting it to legitimate medical research of the kind you describe. Those advocating the scheme at government level have once again demonstrated a fundamental lack of understanding of the implications of this kind of technology. There are a few other questions that seem to have been brushed under the carpet, too, like how opting out would supposedly mean your information never physically left your GP's systems, yet paradoxically there were circumstances discussed a couple of weeks ago where some organisations, like police and security services, would be able to access the data centrally via the new system anyway.
The trouble with many of these privacy issues we've been discussing recently -- whether it's Google-esque creepy mass surveillance, or the NHS plans to consolidate and share particularly sensitive data about individuals, or governments monitoring surveillance networks -- is that they are all cases of Pandora's box. Once you've compelled people to give up privacy and they've been entered into someone's database, that data is out there, and it's subject to redistribution and repurposing at any future time, with or without the blessing of the data subjects. Our privacy laws are dangerously underweight and already fail to balance the heavyweight capabilities of modern technologies. Until that gets fixed -- and I mean fixed in the sense that privacy laws are actually enforced and respected at government level -- the only reasonable conclusion is that we should err on the side of caution with giving up personal data, and challenge every attempt to push the boundaries to make sure it's justified.