Back in 2010 there was a wave of optimism amongst civil liberties campaigners, especially those of us concerned with protecting privacy from an over-bearing database state. Not only did the coalition agreement set out a promise to scrap ID cards and its associated population register, there were other promises too: “We will end the storage of internet and email records without good reason” and then on page 25 of the coalition agreement the statement that “We will put patients in charge of making decisions about their care, including control of their health records”.
In our briefing document ‘Privacy Under Threat’ NO2ID recently gave the coalition 3/10 on sticking to some of these promises. The proposed sale of information from our private medical records is the latest example that illustrates why we have the coalition such a poor rating. The reasoning behind such schemes is a utilitarian argument that the perceived benefit to sharing information trumps any rights or control we as individuals have over our own information.
Sadly we as citizens are losing even more control of our own information. Our medical records continue to pass from doctors to central systems within the NHS, census data can now be widely shared with a range of bodies, and attempts to reclaim data capture by the police on the network of travel tacking ANPR cameras have been met with a stonewall.
Despite the coalition’s initial promises it ia business as usual for Whitehall data-sharing projects. What started under the program of ‘Transformational Government’ is now wrapped up in the language of ‘Open Data’. The new language is attractive – after all we all want public data to be open and accessible. Sadly bureaucrats too often conflate public data with private data collected and stored by public bodies.
Our private NHS medical records should belong to us, we as citizen s should be in control of them. They are not the Department of Health’s to trade and share. If we want to share our medical records so others can benefit there should be a clear opt in system where active consent is sought. This principle of clear consent operates throughout all medical research and should apply to how our data is used too. When government starts taking control of our information alarms bells should ring in those who are liberally minded. After all a society in which government assumes control of information is a society in which the government controls us.
* James Baker is the campaigns manager for NO2ID
‘The Independent View‘ is a slot on Lib Dem Voice which allows those from beyond the party to contribute to debates we believe are of interest to LDV’s readers. Please email [email protected] if you are interested in contributing.