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<nettime> Torygraph: The Snowden privacy panic has spread to medical res
nettime's_institutional_review_board on Sat, 8 Feb 2014 15:31:20 +0100 (CET)

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<nettime> Torygraph: The Snowden privacy panic has spread to medical research


    The Snowden privacy panic has spread to medical research. 
     This is a problem 

Martha Gill

Martha Gill is a former staff writer for the New Statesman who specialises in
neuroscience and society. 

   By Martha Gill Science Last updated: February 7th, 2014

   Since the Snowden revelations everyone has been panicking about
   privacy. Google, Twitter, Facebook and Yahoo are racing to show users
   how well they can protect their data. Government contractors are
   double-scrutinising new hires and encrypting everything in sight. But
   there's about to be one cautious move too many, and it's a serious
   threat to medical research.

   The European Parliament is proposing a new law which will effectively
   illegalise a NHS database of patient records, along with many large
   research projects. The idea had been kicking around for a while, but
   progress ground to a halt last year. After Snowden though, the
   kicking enthusiastically returned.

   The idea is that we should have to get specific patient consent for
   every possible use of their data. (Right now you only need general
   consent, as long as it's all anonymous.. This may sound fair enough -
   but it makes building large databases of patient information almost

   Laws for patient confidentiality vary from country to country, but one
   thing everyone's always agreed on is the importance of disease
   registries.  These vast collections of patient data - used in cancer,
   Alzheimer's, and you-name-it research - would be effectively dismantled
   under the new laws.

   I've written before about the advantages of making patient data
   more available. There are some trials you just can't use volunteers for
   - such as those with pregnant women and children. We need to know what
   side effects drugs can have on these groups, but it's too dangerous to
   experiment on them. Patient data is an vital subsidy.

   In fact there are so many disadvantages to the new initiative that it's
   astonishing it's still a runner.  According to documents by NHS
   officials it would cost the taxpayer over GBP50 million. There are about
   70 important studies last year that it would now make impossible.
   Europe's contribution to global research - such as the much lauded
   Human Brain Project - would dwindle.

   This has happened once before, too. In the 1980s, a new law was
   introduced in Hamburg. You couldn't stick someone's details in a cancer
   registry without their consent. Soon, Hamburg no longer had enough
   samples to make their data representative. They were told they could no
   longer submit it to the international databases and the cancer
   registry, which had been building for 50 years, broke down. Realising
   their mistake, Hamburg eventually revoked the law. Lesson learned?
   Apparently not.

   The irony is that getting to use patient data is already like going
   through security at an airport. There are the legal controls, and there
   are the technological controls. Researchers must also seek approval
   from an ethics committee, who review the risks and the benefits of the
   research. Large penalties are in place for misuse.

   According to those in the research world, the problem in the European
   Parliament right now is ignorance about the safeguards already in
   place, mixed with Snowden paranoia. But in this case the paranoia is
   sorely misplaced. Time to calm down a bit.

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