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Session I: Is Privacy a Casualty of Advancing Research?


Session I:

Is Privacy a Casualty of Advancing Research?

The goal of this session is to explore the problem of privacy protection in a data-rich world, the tensions that exist between the societal good that could come from big data research and the real and perceived risks to individuals, as well as the public’s perspectives about broad data sharing. Panelists will discuss the ethical considerations related to large-scale open data sharing including questions about data ownership, the types and goals of big data research that might be pursued, what needs to be done to maintain public trust in health research, and who are the responsible parties.

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Moderator: Jodi Daniel, J.D., M.P.H.
Crowell & Moring LLP
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Jacob Metcalf, Ph.D.
Data & Society Research Institute
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How big data generates new, powerful insights about individuals and groups and challenges the traditional ways we think about risks and research ethics, focusing on the importance of considering what is done with collected data and some challenges this presents to maintaining public trust in big data research.

Brenda Leong, CIPP/US
Future of Privacy Forum
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A potential framework that allows for a contextual examination of the two seemingly competing objectives of protecting privacy and ensuring utility of datasets for research.

Cinnamon Bloss, Ph.D.
University of California, San Diego
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Public perspective on data sharing and privacy using empirical work done in the area.

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