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Event Type:  Webinar (This is an NIH Science event)
Title:  Tribal Perspectives on Data Sharing
Description:  The aim of broad data sharing is to maximize the public benefit derived from genetic and genomic studies. However, tribal leaders have a fiduciary responsibility to assure that uses of tribal data are responsible, particularly in light of past mis-uses of research data. The sovereign status of tribal governments has implications for research agreements and data-sharing negotiations. Recognizing the unique concerns raised by tribal entities, an NIH-funded research center involving a partnership among three tribal organizations and three universities convened a meeting to consider data sharing and related research issues. The speakers will discuss the tribal perspectives that arose from the meeting, and from their experience participating in tribal partnerships. While there is strong tribal support for efficient research processes that expedite the benefits from collaborative research, there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research, and move beyond existing models of individual consent and community engagement.
Series Name:  Ethical and Regulatory Issues in Cancer Research (ENRICH) Forum
Event URL:
Videocast:  Event will not be videocast
Special Instructions:  Reservations or registration required for this event
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Monday, September 11, 2017   2:30pm - 3:30pm Add To Outlook Calendar     Add To iCal Calendar     Add To Entourage Calendar
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Name:   Wylie Burke, M.D., Ph.D.
Title:   Professor
Organization:   University of Washington School of Medicine
Name:   Denise Dillard, Ph.D.
Title:   Director of Research
Organization:   Southcentral Foundation

Organization(s):  [NIH] National Cancer Institute (NCI)

Location:  Off Campus
Building:  NCI Shady Grove, 9609 Medical Center Dr, Rockville
Room:  5E032/34
Other Information: 

Name:   Charlisse Caga-Anan
Name:   Carol Weil
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