It’s been four years since PRIM&R’s last Social, Behavioral, and Educational Research (SBER) Conference and, this November, we will host the 2015 SBER Conference in Boston, MA. As we get ready for this year’s event, let’s look back at topics discussed in 2011 to see how they have transformed and evolved over the years.
Issues around data sharing and privacy have been widely discussed in our community, but they’re not new; even back at the 2011 SBER Conference, these issues were important themes:
In his keynote address, Alex (Sandy) Pentland, PhD, Toshiba professor of media arts and sciences at Massachusetts Institute of Technology, discussed personal data and the movement into a data-driven world. He concluded that current privacy regulations need to be adjusted to deal with this data and its place in the research process. Now, in 2015, this discussion continues and concerns remain about data and privacy, especially since regulations have not yet caught up with this changing landscape.
In a panel titled, “Technology, Research, and Implications for Privacy/Confidentiality,” Latanya Sweeney, PhD, professor of government and technology in residence at Carnegie Mellon University, provided context around the concept of de-identification of genetic data. Dr. Sweeney noted that, in 2011, we were still trying to get a handle on the rules surrounding de-identification of genetic material.
Conversations around these issues have continued, but four years later, the field still grapples with the changing nature of identification, de-identification, and re-identification of data; privacy and confidentiality, and how they are defined in today’s research landscape; how institutional review boards (IRBs) think about these definitions as they apply to their work; and how emerging methods and techniques contribute to these changing definitions.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.