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Meeting Information



Project Title: Return of Individual-Specific Research Results Generated in Research Laboratories

PIN: HMD-HSP-17-05         

Major Unit:
Health and Medicine Division

Sub Unit:
Board on Health Sciences Policy

RSO:
Mancher, Michelle

Subject/Focus Area:
Health and Medicine; Policy for Science and Technology


Return of Individual-Specific Research Results Generated in Research Laboratories
December 11, 2017 - December 12, 2017
Arnold and Mabel Beckman Center
100 Academy Dr.
Irvine, California


If you would like to attend the sessions of this meeting that are open
to the public or need more information please contact:


Contact Name: Caroline Cilio
Email: ccilio@nas.edu
Phone:
Fax:


Agenda:

Community and Participant Perspectives – Public Webinar
December 11, 2017
Time 3:30-6:30 pm PT

The National Academies’ Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories is examining the preferences of research participants on issues relevant to the return of individual research results through brief discussions with research participants and community representatives. The objective of the discussions is to:
• Explore participant preferences for receiving individual research results generated during research participation;
• Consider whether receiving results would affect participation or trust in the research enterprise;
• Explore the kinds of individual research results participants expect to receive, how they want results returned, and how they would utilize results; and
• Identify any concerns or uncertainties around the return of or the nature of individual research results.

Participants:
• John Molina, Native Health, Pheonix
• Sonja Fuqua, JHS Participant and Community Health Advisor
• Crispin Goytia-Vaquez, Mount Sinai
• Matthew Rose, NMAC
• Lisa Schlager, FORCE
• Stephen Mikita, ASPREE


Closed Session Summary Posted After the Meeting

The following committee members were present at the closed sessions of the meeting:
Paul Appelbaum
Suzanne Bakken
Jeffrey Botkin
Chester Brown
Wylie Burke
Richard Fabsitz
Gregg Gonsalves
Rhonda Kost
Debra Leonard
Amy McGuire
James Nichols
Vanessa Northington Gamble
Bray Patrikc-Lake
Consuelo Wilkins
Brian Zikmund-Fisher

The following topics were discussed in the closed sessions:

The committee utilized the closed session to discuss comments submitted by the public, to review remarks provided during the Participant Perspectives interviews, and to deliberate on study recommendations.

The following materials (written documents) were made available to the committee in the closed sessions:


Date of posting of Closed Session Summary: December 14, 2017