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Re-Identification Risks and Myths, Superusers and Super Stories (Part II: Superusers and Super Stories)

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3 Responses

  1. Anne Winkler says:

    Thanks for the clear and cogent examination of the risk-benefit ratio of using de-identified health data to further our understanding of disease in the human population.

    One thing I have wondered about, in the course of my day (I work for pharma), is exactly how anyone will ever compile large samples of health data in the way privacy champions perceive will happen. I have clients whose office EMR system doesn’t communicate with the hospital’s EMR (hospital is attached to professional building). Records must be faxed from one place to another, then scanned in by hand. (Medical care and response time is getting worse as a result of the delay–a human bandwidth problem, no?) I do not see a proximate future where I can keep my medical history on a thumb drive and hand it to a provider new to me and receive care in a timely fashion.

  2. Anyone interested in the ongoing debate raised here about data de-identification and associated re-identification risks might be interested in joining the discussion that will be taking place in an Online Symposium on the Law, Ethics & Science of Re-identification Demonstrations to be hosted by the Harvard Law School and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics Bill of Health Blog next week from May 20-24th, 2013.

    The online symposium will address the scientific and policy value of re-identification demonstrations and discuss the complex legal and ethical issues that they raise and feature blog posts from a number of notable commenters including:

    Misha Angrist
    Madeleine Ball
    Daniel Barth-Jones
    Yaniv Erlich
    Beau Gunderson
    Stephen Wilson
    Michelle Meyer
    Arvind Narayanan
    Paul Ohm
    Latanya Sweeney
    Jennifer Wagner

    It’s a notable group of scientists, technologists, and law/ethics scholars which should make for some engaging and vigorous debate. I hope Concurring Opinions readers interest in this topic will participate and add their scholarly voices to the discussion.

  3. Here’s a link to the Bill of Health “Law, Ethics and Science of Re-identification Demonstrations” Online Symposium Announcement:

    http://blogs.law.harvard.edu/billofhealth/2013/05/13/online-symposium-on-the-law-ethics-science-of-re-identification-demonstrations/