Mar 032010
 March 3, 2010  Posted by  Breaches, Online

Michael Zimmer has recently raised ethical questions about research utilizing publicly available information from sites such as Facebook and Twitter. Similarly, ethical questions have also been raised by a group of researchers who investigated exposure of personal financial information and personal health information on peer-to-peer or file-sharing networks.

The questions they discuss, within the context of securing Institutional Review Board (IRB) approval, included:

  • Is the research of minimal risk to the participants?
  • Are files on a peer-to-peer file sharing network public information?
  • Is there a reasonable expectation of privacy, and is the expectation of privacy of individuals a relevant consideration?
  • Is it necessary to obtain consent, and is it practicable to obtain individual consent a priori? and
  • Can we notify the affected individuals that we have downloaded their personal information?

You can read their analysis of these ethical issues in the article:

Khaled El Emam, Emilio Neri, Elizabeth Jonker, Marina Sokolova, Liam Peyton, Angelica Neisa, Teresa Scassa. The inadvertent disclosure of personal health information through peer-to-peer file sharing programs. Journal of the American Medical Informatics Association, 2010; 17: 148-158.

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