Law in the Internet Society
-- MathewKenneally - 01 Dec 2014

I wanted to follow on from the question about the trade offs between privacy and the benefits of information gathering I asked earlier in the course. I appreciate now that most of the information people share they do so unknowingly and without any real knowledge of how it is used. Further the "data" being collected is hardly being targeted to benevolent ends. Most of it is being collected and sold by private companies for profit. To the extent "big data" is directed to the advancement of social ends this is incidental.

However, I have been reading quite a lot about the United Kingdom's plan to set up a national health database: The original proposal was data from all visits to a GP or Hospital would be aggregated and anonymized, with exceptions for information such as HIV and pregnancy.

The data, once aggregated an anonymized, will be used to conduct health research. It will be available to private drug companies for a nominal fee to cover the cost of providing the data. The data provided to private companies will include information that could be de-anonymized. For instance a patient who had twins in August in London in 2014, would be a fairly small pool. Also, people with chronic and rare disabilities are easily identified by those disabilities.

It is argued the reforms will allow breakthroughs in pharmaceuticals and more efficient planning of the health system.

The Government had originally made it an "opt-out" rather than "opt-in" system. The ensuing controversy has lead to the program being delayed.

I'm interested in two issues. First, if the scheme were opt-in and citizens are given fair information regarding the risks and safeguards involved is it possible to ethically collect and use this information while minimizing privacy risks? Second, proponents of the scheme have described sharing data as like "paying tax": something each citizen needs to do to contribute to the public health system. They seem to be adopting an "environmental" approach to the issue of privacy but in reverse. That is, social good demands we all surrender some privacy, because unless we do we cannot run the health system as efficiently as possible. Third, while at this stage the state is promising the data will never be matched with other data (eg Credit card records) wont there be extremely strong incentives to square GP/Hosptial data with information gained regarding diet (from credit cards) and general health (from Apple Watches & Fit bit)?



Webs Webs

r1 - 01 Dec 2014 - 17:07:23 - MathewKenneally
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