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    UK Report: Don’t Sell Voter Names, But Do Presume Patient Consent for Research Use of Medical Data

    A joint report (pdf) from the UK Information Commissioner and the Wellcome Trust makes recommendations to the Prime Minister concerning data-sharing programs. The report urges the abolishment of a 2002 law that allows local councils to sell voters’ names and addresses "to anyone for any purpose." Increasingly, "direct marketing companies and companies compiling directories" are buying up the personal data of voters. The report continues:

    In any event, we feel that selling the edited [electoral] register is an unsatisfactory way for local authorities to treat personal information. It sends a particularly poor message to the public that personal information collected for something as vital as participation in the democratic process can be sold to ‘anyone for any purpose’. And there is a belief that the sale of the electoral register deters some people from registering at all.

    The report also includes a disturbing recommendation that implied consent appropriate in cases of medical research. "An NHS patient agreeing to a course of treatment should also be taken to have agreed that information given during the course of the treatment might be made available for future medical research projects, so long as robust systems are in place to protect personal information and privacy. After all, that patient may be benefiting from research using health information from earlier patients."

    No matter what "robust systems are in place to protect personal information and privacy," an individual has every right to decide how his or her medical data is used and by whom. Implied consent for such deeply personal data is an unacceptable recommendation, and I am surprised the report includes it.

    The report includes a variety of other good recommendations. It also supports a worldview that I agree with:

    In our view, however, one principle stands out most clearly: information sharing should be facilitated by technology, not driven by it. The tail should not be allowed to wag the dog. The fact that technology allows more information to be collected about more people does not mean that more information should be collected.

    The full report is available here (pdf), and coverage of the report is here, here, and here.

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