Webinar: Data Sharing in SBER: Balancing Transparency and Human Research Protections

Wednesday, May 1 | 1:00-2:15 PM ET

View the webinar recording:


Overview

Enthusiasm for data sharing and research transparency is increasing across the social sciences, and the long-standing mandate to minimize risks for human subjects in research has begun to overlap with this newer scholarly imperative. IRBs are a critical player in this realm; often, an IRB’s recommendations on a social science research protocol will determine whether or not the data obtained through the study may be shared in the future. During this webinar, speakers will provide knowledge and strategies for IRBs to help their institution’s social scientists approach data sharing in an ethical and responsible manner.

Agenda

  • The intersection between the call for research transparency and the guidelines for human research protections in the context of social sciences and recent developments
  • The role of data repositories in protecting human subjects data while facilitating data availability
  • Real-world cases of social scientists who wished to share human subjects’ data, and how that was addressed (or not) in the IRB application and consent processes
  • Strategies for IRBs to assist and educate social scientists to include the appropriate elements, language, and procedures in their protocol materials, particularly in the following areas:
    • Broad consent—intent vs. practical reality
    • Assessment of sensitivity of data vs. risk of disclosure
    • Informed consent language
    • Planned data management security
    • Access controls on shared data
     

What will I learn?

After attending this webinar, you will be able to:

  • Recognize new developments, trends, and ongoing changes in data sharing as it relates to SBER
  • Appreciate ongoing changes in expectations about data availability as they affect both scholarly communication and the review of research
  • Understand the role of data repositories and IRBs in protecting research subjects while facilitating data availability
  • Guide researchers in developing study documents (e.g., consent forms) that allow for responsible data sharing

Who should attend?

This webinar will benefit IRB professionals and members involved with SBER. Researchers may also benefit from attending the webinar.

Continuing Education

CIP Credit labelWebinar participants holding the Certified IRB Professional (CIP®) credential may apply 1.25 continuing education credits towards CIP recertification. Learn More »

Speakers

Dessi-KirilovaDessislava (Dessi) Kirilova, MA is a curation and IRB specialist at the Qualitative Data Repository, a CoreTrustSeal-certified digital repository, hosted by the Moynihan Institute of Global Affairs at Syracuse University’s Maxwell School. In that capacity, she has assisted in shaping the repository’s policies, acquisitions outreach, curatorial support for depositors (including in dealing with human participants and copyright constraints), data management training, and the processing and publication of all commissioned pilot projects when the repository went live in 2015. Her related interests are in educating social science researchers in good data practices, starting in the research planning stages, as well as in creating bridges to the IRB community, in the belief that we can all learn from and work with each other in the pursuit of ethical research.

Kathleen-MurphyKathleen Murphy, PhD, CIP is a Certified IRB Professional and is currently serving as the manager of the social and behavioral IRB office at Northwestern University, which she has done for seven years. In addition to a 20 year career in the private practice of psychotherapy, and a five-year stint as a social science data librarian, Dr. Murphy has served as a board member on the IRBs at two academic institutions before moving over to the administrative side of managing the social and behavioral IRB office for Northwestern. She has long-standing interests in the two disciplines of research methods and professional ethics and has taught and presented extensively in both. As an IRB professional, Dr. Murphy has utilized her background in social work, research, ethics, and teaching to implement a variety of customer support services for faculty, students, and staff targeted toward enhancing understanding of what the IRB is, what it does, and when and why oversight is relevant (not just annoying!).

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Additional Resources

A collection of relevant readings accompany each PRIM&R webinar. Groups that register for webinars receive a discussion guide containing thought-provoking questions and facilitation tips that may help in using the webinar as an educational tool for IRBs.

Fees

If you are not yet a PRIM&R member, we encourage you to join today, and take advantage of your very first membership benefit immediately: a discounted registration fee to this webinar.

Individual rates
Member $145
Nonmember $200
Group rates
Member $325
Nonmember $400

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