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.
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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.
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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. During this year’s SBER Conference, expert facilitators will talk about these subjects during the following sessions:
Plenary Session: Emerging Areas in SBER – During this session, speakers will discuss privacy as it relates to research with social media, mhealth, and the evolving definition of privacy in the research landscape.
C6: Panel Follow-Up: What Do We Need to Do With This? Reviewing SBER Studies that Involve Emerging Methods and Technologies – This session is a follow up to the Emerging Areas plenary session.
Changing Concepts of Anonymity, Confidentiality, and Privacy in SBER (A2, Basic and A4, Advanced) – During these sessions, faculty will discuss the changing definitions of these concepts and will share examples of de- and re-identification of data in SBER.And for those SBER attendees staying on to continue their SBER-related learning, several related sessions are planned during the 2015 Advancing Ethical Research Conference as well:
Panel III: Moving Targets: The Challenges of Responsible Mobile Health (mHealth) Research will include discussion about privacy as it relates to mHealth and the data being gathered from those technologies
A22: Ethical Issues in Research with Big Data - similar to the above panel, except this session will focus on big data and issues of public trust, privacy, identifiability of individuals or groups, and protection of public interest.
B24: Data Streams, Behavioral Research, and Public Health – similar to the above sessions, but as it relates to SBER and public health.
Panel IV: Picked Out of a Crowd: Privacy and Re-Identification Research – this panel will cover the reverse issue: protocols are designed to explore the limits of existing privacy and confidentiality protections; in particular, this panel will cover research attempting to re-identify supposedly de-identified data sets.
C16: When it Happens to You: Identifying and Managing Privacy Breaches in Research – this session will inform attendees how to manage breaches in privacy.Data sharing and privacy are just two of the topics that will be discussed at the 2015 SBER Conference on November 12, 2015 in Boston. Registration is now open! View the conference schedule here .