IASSIST '08 Followup, Part 2: Restricted Data

By PamB | July 3, 2008

Regardless of the institutional setting in which we work, more and more of us are having to address researcher access to restricted or confidential datasets.  This post focuses on sessions at Stanford that covered this important topic–or rather, group of topics because there are so many intersecting responsibilities to actually making such access a reality for our users.

Lisa Neider’s poster session focused on the practicalities of “Administering Restricted Data Contracts.”  In particular, her handout provided “natural language” tips when working with the agreements required by data distributors.

I also attended Friday’s paper session, “Licensing, Privacy, and Protection. " Many of us now interact with Institutional Review Boards (IRB) in our respective institutions.  It’s not easy to balance the needs of researchers, expectations of the IRBs, and requirements of data collectors and distributors.  Summaries of the presentations follow. Admittedly, they focus on the things that I found interesting–so do comment on the points I’ve missed!

Amy Pienta (ICPSR) was unable to present in person, but session chair Libbie Stephenson discussed the high points and forwarded Amy’s excellent handouts.  They review the many (many) issues involved with data deposit and retention, ownership and distribution rights, and respondent protection.  Although the paper focused on retention and archiving, the more memorable elements covered information loss. A couple chilling scenarios suffice.  An estimated 20% of data collected with NIH funding are never archived.  Significant amounts of data are discarded due to retention (or rather, nonretention policies) or misinterpretation of institutional or publication guidelines.  In particular, limited retention guidelines (such as those of APA) appear to give researchers a green light to dump their data. 

Thomas Lindsay (University of Minnesota) started with an historical overview on evolution of IRBs in the United States.  Review panels are largely populated by senior researchers. Although they bring substantial research experience to the table, their perspectives regarding security measures (the “locked file cabinet” approach) reflect traditional methodologies that don’t translate completely to the digital age.  The result of IRB deliberations is, too often, inconsistent application of guidelines.  Such case-by-case review can inadvertently feed investigator disillusionment with the IRB process.  Data professionals can play an important intermediary role between researchers and panels charged with protecting the rights of research participants. 

Libbie Stephenson (UCLA) discussed institutional review processes from the perspective of a service that supports public-use data products.  Based on interactions with a variety of players (data users, researchers seeking funding, IRB members, university legal counsel staff, and others), she’s compiled an excellent resource, Guidelines for Data Sharing and Access.  See the link from here:  http://www.sscnet.ucla.edu/issr/da/resource.htm

Pam Baxter
IASSIST U.S. Region Secretary