Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop (2023)

Chapter: Appendix A: Public Meeting Agendas

Visit NAP.edu/10766 to get more information about this book, to buy it in print, or to download it as a free PDF.
Previous Chapter: 8 Key Themes and Considerations for Future National Health and Nutrition Examination Survey (NHANES)
Page 161 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel

Appendix A

Public Meeting Agendas

COMMITTEE ON NATIONAL STATISTICS

Virtual Workshop Broadcast via Webcast

December 2, 2022
DAY 1—OPEN

10:00–10:20 Welcome and Goals for Workshop
  • Brian Harris-Kojetin, Director, Committee on National Statistics, National Academies of Sciences, Engineering, and Medicine
  • Brian C. Moyer, Director, National Center for Health Statistics, Centers for Disease Control and Prevention
  • Jeffrey R. Botkin, Chair, Workshop Planning Committee, University of Utah
10:20–11:45 I. NHANES: Current Structure and Opportunities for Adding Genomics

10:20–10:35: Overview of the NHANES resource

  • Alan Simon, National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention (CDC)

10:35–10:50: NHANES Biospecimen Program

  • Alan Simon, NCHS, CDC
Page 162 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
10:50–11:05: Types of research supported by the current survey data
  • Dana C. Crawford, Case Western Reserve University (Member, Workshop Planning Committee)

11:05–11:20: Genetics 101/201: Understanding the current genetic testing landscape

  • Ingrid A. Holm, Harvard Medical School and Boston Children’s Hospital (Member, Workshop Planning Committee)

11:20–11:45: Moderator/discussant questions and reflections

  • Leslie G. Biesecker, National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH) (Member, Workshop Planning Committee)
11:45–12:00 Break
12:00–2:00 II. Return of Clinically Actionable Genetic Results

12:00–12:20: What data is being generated? Implications for returning results

  • Matt Lebo, Mass General Brigham

12:20–12:40: Ethical arguments regarding the return of research results

  • Yvonne Bombard, University of Toronto

12:40–1:00: Current ACMG [American College of Medical Genetics and Genomics] list, process, and alternatives

  • Marc S. Williams, Geisinger

1:00–1:20: Attitudes and outcomes of returning results to participants

  • Julie C. Sapp, NHGRI

1:20–1:40: Issues regarding data reanalysis for actionable variants

  • Natasha Strande, Geisinger

1:40–2:00: Moderator/discussant questions and reflections

  • Jeffrey R. Botkin, University of Utah (Chair, Workshop Planning Committee)
2:00–2:15 Break
Page 163 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
2:15–3:30 III. Regulatory Issues in the Return of Genetic Results

2:15–2:30: CLIA (Clinical Laboratory Improvement Amendments) lab certification and CLIA test validation

  • Benjamin Solomon, National Institutes of Health (NIH)

2:30–2:45: Potential FDA [Food and Drug Administration] oversight and approval

  • Beth Collins, All of Us Research Program, NIH

2:45–3:00: Navigating federal and state-specific laws governing genetic testing and the return of results

  • Katherine Blizinsky, All of Us Research Program, NIH

3:00–3:30: Moderator/discussant questions and reflections

  • Ingrid A. Holm, Boston Children’s Hospital (Member, Workshop Planning Committee)
3:30–4:00 General Discussion
4:00 Adjournment
4:00–4:30 Planning Committee Discussion (Closed Session)

December 7, 2022
DAY 2—OPEN

12:00–2:00 IV. Process for the Return of Genetic Results

12:00–12:20: Infrastructure, expertise, and other necessary resources to communicate results in a research setting

  • Anastasia Wise, All of Us Research Program, NIH

12:20–12:40: Communication strategies in a clinical research setting

  • Kathy Leppig, eMERGE, University of Washington

12:40–1:00: Communication strategies in a direct-to-consumer context

  • Amy Sturm, 23andMe

1:00–1:20: Special issues for returns to participants in low-resource communities: Lessons from the Healthy Nevada Project

  • Joe Grzymski and Gai Elhanan, Healthy Nevada Project
Page 164 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel

1:20–1:40: Special issues for returns to participants in low-resource communities: Lessons from the BioMe project

  • Noura Abul-Husn, Icahn School of Medicine at Mount Sinai

1:40–2:00: Moderator/discussant questions and reflections

  • Adam H. Buchanan, Geisinger (Member, Workshop Planning Committee)
2:00–2:15 Break
2:15–3:30 V. Informed Consent When Considering Returning Genetic Results to Survey Participants

2:15–2:30: Community Engagement and Informed Consent in NHANES

  • Duong (Tony) Nguyen, CDC

2:30–2:50: Informed consent content for return of research results and biobanking

  • David Magnus, Stanford University

2:50–3:10: The informed consent process for return of results and biobanking

  • Michelle N. Meyer, Geisinger

3:10–3:30: Moderator/discussant questions and reflections

  • Amy McGuire, Baylor College of Medicine
3:30–4:00 General Discussion
4:00 Adjournment

December 8, 2022
DAY 3—OPEN

1:00–1:10 Recap of the Discussion Thus Far
  • Jeffrey R. Botkin, University of Utah (Chair, Workshop Planning Committee)
1:10–3:00 VI. Considerations in the Return of Genetic Results: Lessons from Other Research Studies

1:10–1:30: Genomics England

  • David Bick, Genomics England

1:30–1:50: Million Veteran Program

  • Jason Vassy, Harvard Medical School and Veterans Affairs Boston Healthcare System
Page 165 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel

1:50–2:10: Alabama Genomic Health Initiative

  • Bruce Korf, University of Alabama at Birmingham

2:10–2:30: All of Us

  • Stephanie Devaney, All of Us Research Program, NIH

2:30–3:00: Moderator/discussant questions and reflections

  • Leslie G. Biesecker, NHGRI, NIH (Member, Workshop Planning Committee)
3:00–3:15 Break
3:15–4:15 Panel Discussion: Key Themes and Considerations for Future NHANES
  • Jeffrey R. Botkin, University of Utah (Chair, Workshop Planning Committee)
  • Workshop Planning Committee Members
    • Leslie G. Biesecker, NHGRI, NIH
    • Natasha Bonhomme, Expecting Health
    • Adam H. Buchanan, Geisinger
    • Dana C. Crawford, Case Western Reserve University
    • Ingrid A. Holm, Harvard Medical School and Boston Children’s Hospital
    • David Forster, WCG IRB (formerly known as Western Institutional Review Board-Copernicus Group)
4:15 Adjournment
Page 166 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel

This page intentionally left blank.

Page 161 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
Page 161
Page 162 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
Page 162
Page 163 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
Page 163
Page 164 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
Page 164
Page 165 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
Page 165
Page 166 Cite Bookmark
Suggested Citation: "Appendix A: Public Meeting Agendas." National Academies of Sciences, Engineering, and Medicine. 2023. Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27105.
Save
Cancel
Page 166
Next Chapter: Appendix B: Committee and Speaker Biosketches
Subscribe to Email from the National Academies
Keep up with all of the activities, publications, and events by subscribing to free updates by email.