Massive data sets are being generated on an unprecedented scale in the academic and private sectors through wearable health devices, online educational courses, social media, and more. "Big data" has great potential for scientific advances in both biomedical and social, behavioral, and education research (SBER), and in recent years, institutional review boards (IRBs) have seen an influx of research involving large data sets. As our society as a whole and the research community continue to produce and utilize large data sets, IRBs need to know how to best protect human subjects when reviewing a protocol that involves big data. (Presented on February 10, 2016)
Using case studies from SBER and biomedical research, presenters shared best practices for how to review research protocols that either create or use large data sets, with a focus on maintaining the value of the data while protecting human subjects. During this intermediate-level webinar, presenters discussed considerations for IRB review from the perspectives of an assistant IRB director at an academic institution and a data security expert at a commercial research firm. The following topics were discussed:
- Innovative recommendations for systemic institutional review—including data use agreements, memoranda of understanding, and data security review—to complement IRB review, and how to make the most of these collaborations at small, resource-tight institutions
- The risk of re-identification after a research subject’s data is merged into a large data set and posted publicly after the study is completed
- Best practices regarding informed consent and managing subject expectations in light of shifting cultural attitudes around anonymity and privacy
- Considerations for academic and commercial ownership and use of large data sets, including distribution to the public and the use of pre-existing data in protocols
What will I learn?
After attending this webinar, attendees were able to:
- Implement best practices and effective strategies for IRB review of protocols that use large data sets in the areas of informed consent, risk, anonymity, and data security, and guide investigators in managing subjects’ expectations of anonymity and privacy
- Leverage the skills and expertise of other institutional bodies and specialists outside the IRB to protect data and human subjects
- Understand the current landscape of research with large data sets: what has been accomplished, and what challenges remain
Who should attend?
This intermediate-level webinar was useful for IRB members and professionals, institutional officials, data scientists, and investigators who conduct research involving large data sets.
Webinar participants holding the Certified IRB Professional (CIP®) credential may apply 1.5 continuing education credits towards CIP recertification. Learn More »
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