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National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Sciences Policy; Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories; Downey AS, Busta ER, Mancher M, et al., editors. Returning Individual Research Results to Participants: Guidance for a New Research Paradigm. Washington (DC): National Academies Press (US); 2018 Jul 10.

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Returning Individual Research Results to Participants: Guidance for a New Research Paradigm.

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BPublic Agendas

Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories

First Committee Meeting

  • July 19, 2017
  • National Academies Keck Building
  • 500 Fifth Street, NW, Washington, DC 20001

AGENDA

OPEN SESSION

1:00–1:15 p.m.Opening Remarks to Public Audience
  • Jeffrey Botkin, Committee Chair
1:15–2:00 p.m.Presentation by Sponsors:
  • Stephanie Devaney, National Institutes of Health
  • Adam Berger, Food and Drug Administration
  • Karen Dyer, Centers for Medicare & Medicaid Services
2:00–2:45 p.m.Sponsor Q&A with Committee Moderator:
  • Jeffrey Botkin, Committee Chair
2:45 p.m.ADJOURN Open Session

Second Committee Meeting

  • September 6–7, 2017
  • National Academy of Sciences Building
  • 2101 Constitution Avenue, NW, Washington, DC 20148

AGENDA

OPEN SESSION

Day 1: September 6, 2017
8:30–8:45 a.m.Welcome and Opening Remarks
  • Jeffrey Botkin, Committee Chair
8:45–10:15 a.m.Session 1: Participant and Community Perspectives
  • Moderator: Gregg Gonsalves, Committee Member
    • Fran Visco, President, National Breast Cancer Coalition
    • Ellen Wagner, Board of Directors, Parent Project Muscular Dystrophy
    • Chioma Nnaji, Program Director, Multicultural AIDS Coalition
10:15–10:30 a.m.BREAK
10:30 a.m.–12:00 p.m.Session 2a: Perspectives of Researchers and Laboratorians
  • Moderator: Debra Leonard, Committee Member
    • Wendy Chung, 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
12:00–12:30 p.m.LUNCH
12:30–1:15 p.m.Session 2b: Successes and Challenges—CSER and eMERGE
  • Moderator: Steven Joffe, Committee Member (resigned from the committee on September 26, 2017)
    • 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
1:15–2:45 p.m.Session 2c: Experiences to Date of Returning Results from Different Health Care Institutions
  • Moderator: Chester Brown, Committee Member
    • Febe Wallace, Director of Primary Care, Cherokee Health Systems
    • Ronald Przygodzki, Director, Genomic Medicine Implementation, Department of Veterans Affairs, Office of Research & Development
    • Joanne Murabito, Research Center Director, Framingham Heart Study
    • Adam Buchanan, Clinical Investigator I, Geisinger Health System
2:45–3:00 p.m.BREAK
3:00–4:30 p.m.Session 3: Laws and Regulations Governing the Return of Results
  • Moderator: Jeffrey Botkin, Committee Chair
    • 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.
4:30–6:00 p.m.Session 4: Institutional Management and Oversight
  • Moderator: Rhonda Kost, Committee Member
    • 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
    • Mark Sobel, Executive Officer, American Society for Investigative Pathology
    • Heather Pierce, Senior Director, Science Policy and Regulatory Counsel, Association of American Medical Colleges
6:00 p.m.ADJOURN
DAY 2: September 7, 2017
8:00–8:15 a.m.Welcome and Opening Remarks
  • Jeffrey Botkin, Committee Chair
8:15–9:45 a.m.Session 5: Communicating Results to Meet User Needs
  • Moderator: Consuelo Wilkins, Committee Member
    • 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
9:45–10:00 a.m.BREAK
10:00–11:00 a.m.Session 6: A Discussion with Workshop Panelists
  • Moderator: Jeffrey Botkin, Committee Chair
    • Gail Javitt, Member of the Firm in the Health Care and Life Sciences Practice, Office of Epstein Becker Green (participating via 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
11:00–11:30 a.m.Public Comment
  • Moderator: Jeffrey Botkin, Committee Chair
11:30 a.m.ADJOURN

Third Committee Meeting

Public Workshop

  • October 24, 2017
  • National Academies Keck Building
  • 500 Fifth Street, NW, Washington, DC 20001
AGENDA

OPEN SESSION

1:00–2:30 p.m.Basic and Translational Researcher Panel (non-genetic genomics)
  • Moderator: Suzanne Bakken, Committee Member
    • Nicholas Newman, Department of Pediatrics, Cincinnati Children's Hospital Medical Center
    • Theresa Powell, University of Colorado Anschutz Medical Campus
4:30–5:30 p.m.Public Comment Session
5:30 p.m.ADJOURN Open Session

Public Webinar

  • December 7, 2017
  • 90-Minute Webinar
2:00–3:30 p.m.Quality Standard for Regulated and Non-Regulated Biomedical Research Laboratories
  • Moderator: Debra Leonard, Committee Member
    • Rebecca Davies, University of Minnesota
    • Randy Querry, American Association for Laboratory Accreditation

Fourth Committee Meeting

Community and Participant Perspectives—Public Webinar

  • December 11, 2017
  • Arnold and Mabel Beckman Center
  • 100 Academy Drive, Irvine, CA
3:30–6:30 p.m.Community and Participant Perspectives—Public Webinar
  • John Molina, Native Health, Phoenix
  • Sonja Fuqua, Jackson Heart Study Participant and Community Health Advisor
  • Crispin Goytia-Vaquez, Mount Sinai Centers for Community and Academic Research Partnerships
  • Matthew Rose, National Minority AIDS Council
  • Lisa Schlager, Facing Our Risk of Cancer Empowered
  • Stephen Mikita, Aspirin in Reducing Events in the Elderly
Copyright 2018 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK525074
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