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Session III: Protecting Privacy & Confidentiality: A Shared Responsibility


Session III:

Protecting Privacy & Confidentiality: A Shared Responsibility

The goals of this session are to discuss some of the challenges facing IRBs and institutions in the review of proposed data sharing options for research that falls under the Common Rule, and explore ethical oversight of big data research that falls outside the scope of the Common Rule. Invitees will explore the possible roles of a variety of stakeholders for supporting responsible conduct of research involving big data in addition to potential approaches to ethical evaluation of proposed big data research.

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Moderator: Elizabeth Buchanan, Ph.D.
University of Wisconsin, Stout
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Michael Zimmer, Ph.D.
Marquette University
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Empirical research project with IRBs on how IRBs review big data research.

Adarsh K Gupta, D.O., M.S., FACOFP
Rowan University School of Osteopathic Medicine
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A practical and comprehensive framework that ethics committees could use when reviewing research protocols with privacy and confidentiality-related risks.

Megan Kasimatis-Singleton, J.D., M.B.E., CIP
Johns Hopkins University School of Medicine
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Complex regulatory challenges that institutions face in the fast-evolving field of data science, and examples of institutional operations and policies designed to uphold a commitment to ethical research in the face of such challenges.

Brenda Leong, CIPP/US
Future of Privacy Forum
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Encouraging ethical review of big data research: development of an operational questionnaire.

Jacob Metcalf, Ph.D.
Data & Society Research Institute
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Recommendations for responsible big data research: ten simple rules.

Content created by Office for Human Research Protections (OHRP)
Content last reviewed on September 27, 2019