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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: Public Workshop
September 6, 2017 - September 7, 2017
National Academy of Sciences Building
2101 Constitution NW
Washington D.C. 20148


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: 202-334-2651
Fax:


Agenda:

Day 1: September 6, 2017

8:30 a.m. – 8:45 a.m. Welcome and opening remarks
Jeffrey Botkin, Associate Vice President for Research, Professor of Pediatrics, University of Utah School of Medicine, Committee chair

8:45 a.m. –10:15 a.m. Session 1: Participant and community perspectives
Moderator: Gregg Gonsalves, Assistant Professor, Yale School of Public Health, Committee member
Panelists:
• Fran Visco, President, National Breast Cancer Coalition
• Ellen Wagner, Board of Directors, Parent Project Muscular Dystrophy
• Chioma Nnaji, Program Director, Multicultural AIDS Coalition

10:15 a.m. – 10:30 a.m. BREAK

10:30 a.m. – 12:00 p.m. Session 2a: Perspectives of researchers and laboratorians
Moderator: Debra Leonard, Professor and Chair of Pathology and Laboratory Medicine, University of Vermont, Committee member
Panelists:
• Wendy Chung, Kennedy Family Professor of Pediatrics and Medicine, Columbia University
• Carolyn Compton, Professor of Life Sciences, Arizona State University
• Jessica B. Langbaum, Principal Scientist, Banner Alzheimer's Institute
• Lea C. Harty, BioBank Biological Materials Custodian, Pfizer, Inc ., Representative of The Industry Pharmacogenomics Working Group (I-PWG)

12:00 p.m. – 12:30 p.m. LUNCH

12:30 p.m. – 1:15 p.m. Session 2b: Lunch keynote: Successes and challenges – CSER and eMERGE
Moderator: Steven Joffe, Vice Chair of Medical Ethics, Emanuel and Robert Hart Professor of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Committee member
Panelists:
• Rex Chisholm, Vice Dean for Scientific Affairs and Graduate Education, Adam and Richard T. Lind Professor of Medical Genetics, Feinberg School of Medicine, Northwestern University, eMERGE
• Gail Jarvik, Head, Division of Medical Genetics, University of Washington, CSER/eMERGE

1:15 p.m. – 2:45 p.m. Session 2c – Experiences to date of returning results from different healthcare institutions
Moderator: Chester Brown, Professor, St. Jude Chair of Excellence in Genetics, Department of Pediatrics, University of Tennessee Health Science Center, Committee Member
Panelists:
• Febe Wallace, Director of Primary Care, Cherokee Health Systems
• Ronald Przygodzki, Director, Genomic Medicine Implementation, U.S. Department of Veterans Affairs, Office of Research & Development
• Joanne Murabito, Research Center Director, Framingham Heart Study
• Adam Buchanan, Clinical Investigator I, Geisinger Health System

2:45p.m. – 3:00p.m. Break

3:00 p.m. – 4:30 p.m. Session 3: Laws and regulations governing the return of results
Moderator: Jeffrey Botkin, Associate Vice President for Research, Professor of Pediatrics, University of Utah School of Medicine, Committee chair
Panelists:
• Susan M. Wolf, McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; University of Minnesota Law School, Medical School, and Consortium on Law and Values in Health, Environment & the Life Sciences
• David J. Peloquin, Associate, Ropes & Gray LLP
• Sally Howard, Head of Regulatory Affairs and Policy and Chief Privacy Officer, Human Longevity, Inc.

4:30 p.m. – 6:00 p.m. Session 4: Institutional management and oversight
Moderator: Rhonda Kost, Clinical Research Officer, The Rockefeller University Center for Clinical Translational Science, Committee member
Panelists:
• Leslie G. Biesecker, Chief, Medical Genomics and Metabolic Genetics Branch, National Institutes of Health, National Human Genome Research Institute
• Alexis Carter, Physician Informaticist, Children’s Healthcare of Atlanta, Representative from College of American Pathologists (CAP)
• Mark Sobel, Executive Officer, American Society for Investigative Pathology (ASIP)
• Heather Pierce, Senior Director, Science Policy and Regulatory Counsel Association of American Medical Colleges

6:00 p.m. ADJOURN



DAY 2: September 7, 2017


8:00 a.m. – 8:15 a.m. Welcome and opening remarks
• Jeffrey Botkin, Associate Vice President for Research, Professor of Pediatrics, University of Utah School of Medicine, Committee chair

8:15 a.m. – 9:45 a.m. Session 5: Communicating Results to Meet User Needs
Moderator: Consuelo Wilkins, Executive Director, Meharry-Vanderbilt Alliance and Associate Professor of Medicine, Vanderbilt University Medical Center, Committee member
Panelists:
• Sally Okun, Vice President for Policy and Ethics, PatientsLikeMe
• Julia Wynn, Senior Genetic Counselor and Clinical Research Manager, Columbia University Medical Center
• Sara Czaja, Leonard M. Miller Professor in the Departments of Psychiatry and Behavioral Sciences, University of Miami Miller School of Medicine (participating via WebEx)
• John Wilbanks, Chief Commons Officer, Sage Bionetworks

9:45 a.m. – 10:00 a.m. BREAK

10:00 a.m. – 11:00 a.m. Session 6: A discussion with workshop panelists
Moderator: Jeffrey Botkin, Associate Vice President for Research, Professor of Pediatrics, University of Utah School of Medicine, Committee chair
Panelists:
• Gail Javitt, Member of the Firm in the Health Care and Life Sciences practice, Office of Epstein Becker Green (participating vie WebEx)
• Leslie G. Biesecker, Chief, Medical Genomics and Metabolic Genetics Branch, National Institutes of Health, National Human Genome Research Institute
• Ellen Wagner, Board of Directors, Parent Project Muscular Dystrophy

11:00 a.m. – 11:30 a.m. Public Comment
Moderator: Jeffrey Botkin, Associate Vice President for Research, Professor of Pediatrics, University of Utah School of Medicine, Committee chair

11:30 a.m. ADJOURN public workshop


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
Vanessa Northington Gamble
Gregg Gonsalves
Steven Joffe
Rhonda Kost
Debra Leonard
Amy McGuire (participating via WebEx)
James Nichols (participating via WebEx)
Consuelo Wilkins
Brian Zikmund-Fisher (participating via WebEx)

The following topics were discussed in the closed sessions:
The committee used the closed session to deliberate upon findings from the public workshop and recommendations for the return of results.

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


Date of posting of Closed Session Summary: September 13, 2017