Course
OHRP Exploratory Workshop: Is Privacy a Casualty of Advancing Research?
Ended Sep 19, 2019
Full course description
Thursday, September 19th, 2019 from 6:25am-8:30am, Gesteland-White Auditorium, Eccles Institute of Human Genetics at the University of Utah
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.
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.