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2012 Report from the Interest Group on Human Subjects Review Committees and Privacy and Confidentiality in Research

Topic:
For those of you exploring issues of human subjects, privacy and confidentiality, this group may be of interest.  In the coming year we hope to put together some resources and guides for those working with confidential data or human subjects related work.  Please contact libbie@ucla.edu if you are "interested"!

Interest Group on Human Subjects Review Committees and Privacy and Confidentiality in Research
This group will focus on issues related to conducting research using human subjects in the social sciences. Particular areas of focus and discussion will include, but are not limited to the following:
· The role and function of the human subjects review board as social science research enters the digital age.
· The human subject review influences and effects on data management, dissemination, curation and preservation practices.
· Issues related to protection of human subjects laws and policies established in IASSIST member countries.
· Issues related to privacy and confidentiality of human subjects in research.
We will seek out and take advantage of opportunities for education, outreach and advocacy on subjects related to human subjects review committees, including proposing sessions with rele vant presentations at IASSIST conferences and creating web based resources and tools for members.
2011-2012 Chair: Libbie Stephenson, libbie@ucla.edu

2011-2012 report:  The Interest group has been largely inactive this past year; however two efforts are worthy of mention.  In the U.S. the Department of Health and Human Services circulated an Advanced Notice of Proposed Rulemaking (ANPRM): Human Subjects Research and Reducing Burden, Delay and Ambiguity for Investigators.  The research community was invited to comment.  Given time constraints it was decided that IASSIST (via email discussion with IASSIST AC members) would not make a formal statement; however individual members of IASSIST were encouraged to submit comments.  A link to the details on this effort is here: http://www.hhs.gov/ohrp/humansubjects/anprm2011page.html and contains directions to individual comments. The Interest Group would like to thank George Alter (DataPASS, ICPSR) Micah Altman (MIT) and Joann Juhnke for their support and collaboration on responses to this ANPRM.

A second activity involved a U.S. Office of Science and Technology Request for Information: Public Access to Digital Data Resulting from Federally Funded Scientific Research.  This RFI was broad in scope however, several of the questions were of a human subjects nature and again, IASSIST members were encouraged to submit responses and a number did so. Details on the RFI can be found here: https://www.federalregister.gov/articles/2011/12/23/2011-32947/request-for-information-public-access-to-digital-data-resulting-from-federally-funded-scientific.  The Interest Group would like to thank George Alter (DataPASS, ICPSR) Micah Altman (MIT) for their support and collaboration on responses to this RFI.

The Interest Group would like to continue for another year and unless there is someone else who would like to become Chair, the current Chair is willing to continue in this role.  The Interest Group would welcome suggestions for further activities from the AC if any are forthcoming.

Respectfully submitted,
Libbie Stephenson, Chair

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