Panel: Confidentiality and Access Concerns of the Social Sciences and Human Subjects Ethics Review Boards

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, 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.

The second panelist, Robert Downs, 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.

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.

• Arja Kuula, Finnish Social Science Data Archive, University of Tampere Presentation
• Robert Downs, Columbia University Presentation