Human Subjects Interest Group

This is a description of a former Interest Group

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.

Members

• Libbie Stephenson, UCLA, libbie [ at ] ucla.edu (Chair)
• Amy Pienta, ICPSR, apienta [ at ] umich.edu
• Jacob Carlson, Purdue, jrcarlso [ at ] purdue.edu
• Thomas Lindsay, U Minnesota, lindsayt [ at ] socsci.umn.edu
• Cindy Severt, U Wisconsin, Madison, cdsevert [ at ] wisc.edu

Past activities

The 2009 Conference

Session D3 The Ideal IRB: Perspectives on Researchers, Institutional Data Archives and Professional Data Organizations Chair: Thomas Lindsay (University of Minnesota)

In four presentations, this session will address issues with respect to how IRB’s (Institutional Review Boards) affect the data gathering/sharing/preserving practices of researchers; understanding how IRB’s view their role in overseeing the re-use of social science researchers and how this affects institutional repositories such as ICPSR; and finally, we will review issues addressed in the first two presentations, highlight how some organizations are responding, and introduce a newly formed IASSIST IRB Interest Group. We plan on opening up the floor for discussion on next steps.

• Kristine Witkowski and George Alter (ICPSR) » Presentation

• Elizabeth Stephenson (UCLA, ISSR Data Archives) and Jacob Carlson (Purdue University) presented by Thomas Lindsay (University of Minnesota) » Presentation

• Arja Kuula (Finnish Social Science Data Archive, FSD) » Presentation

The 2010 Conference

Session E3 Panel: Confidentiality and Access Concerns of the Social Sciences and Human Subjects Ethics Review Boards Chair: Thomas Lindsay (University of Minnesota) Moderator: Libbie Stephenson, Social Science Data Archive, University of California, Los Angeles

In the United States and elsewhere, the need for ethics review was addressed in response to egregious ethical violations in medical and biological research. Research review in the social and behavioral sciences has slowly evolved from this medical background, but several contentious issues remain in the effort to best address the needs and risks of social science data collection, analysis, and archival. This panel will be structured to bring together various stakeholders in the ongoing worldwide discussion of ethics review in the social sciences to discuss current needs and future directions in the United States and elsewhere. This session will be structured as a panel discussion and not as a series of presentations. Each panelist will be given a chance at the beginning to describe his or her viewpoints regarding the current state of regulation, data access and confidentiality in social science research. However, a moderated discussion centered around issues of data accessibility, confidentiality, regulatory development, and the roles of data archives, to name a few, will comprise the bulk of the session.

The first panelist, Arja Kuula (Finnish Social Science Data Archive, University of Tampere), will describe the standpoints and the scope of the Finnish ethics review system, which differs from the U.S. system. One of the goals of the Finnish system is to find a balance between confidentiality and the openness of science and research. In addition to informing about the ethical norms that relate to data archiving, Arja will tell how the Finnish Social Science Data Archive has been involved in making guidelines for ethics review at the University of Tampere. » Presentation

The second panelist, Robert Downs (Columbia University), will present on the perspective that the IRB takes on data management when reviewing research protocols for the protection of human subjects and discuss ways in which these issues can be addressed. He will also discuss some challenges that the protection of human subjects presents to researchers and archives for the collection, management, and dissemination of data. » Presentation

The third panelist, Yasamin Miller, will speak on the current state of ethics review and how it should and will change in the future. Yasamin will also provide perspectives, concerns, ideas, etc. from the human subjects review board/IRB side of the table.