Board on Health Sciences Policy

Workshop on Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey Day 2 of 3 (Virtual)

December 7, 2022

12:00 PM - 4:00 PM (ET)

Past

Materials

About

This multi-day virtual workshop will take place on three days as follows:

Day 1: Friday, December 2 from 10am - 4pm Eastern Time

10:00 – 10:20am ET Welcome and Goals for Workshop
10:20 – 11:45am ET Session I. NHANES: Current Structure and Opportunities for Adding Genomics
12:00 – 2:00pm ET Session II. Return of Clinically Actionable Genetic Results
2:15 – 3:30pm ET Session III. Regulatory Issues in the Return of Genetic Results
3:30 – 4:00pm ET General Discussion

Day 2: Wednesday, December 7 from 12pm - 4pm Eastern Time

12:00 – 2:00pm ET Session IV. Process for the Return of Genetic Results
2:15 – 3:30pm ET Session V. Informed Consent When Considering Returning Genetic Results to Survey Participants
3:30 – 4:00pm ET General Discussion

Day 3: Thursday, December 8 from 1pm - 4:15pm Eastern Time

1:00 – 1:10pm ET Recap of the Discussion Thus Far
1:10 – 3:00pm ET Session VI. Considerations in the Return of Genetic Results: Lessons from Other Research Studies
3:15 – 4:15pm ET Panel Discussion: Key Themes and Considerations for Future NHANES

The first day of the workshop, December 2, will provide an overview of the National Health and Nutrition Examination Survey (NHANES) and explore the opportunity and challenges associated with adding genetic tests to the active survey. Experts will discuss specific ethical and practical considerations associated with returning clinically actionable genetic results, including a special session focused on the regulatory issues. Building from there, day two of the workshop will examine the process for returning results, special issues when returning results to low-resource communities, and implications for informed consent. During the final day of the workshop, experts will share information about their experiences with returning results in contexts that are similar to NHANES. The workshop will conclude with a panel discussion on the key themes and considerations for future NHANES.

Please click here to return to the main event page for this workshop.

Scroll down to view the Webcast. The Agenda and Workshop Materials Packet are available for download at the bottom of this Webpage.

Organizing Project

Workshop on Considerations for Returning Individual Genomic Results from Population-Based Surveys: Focus on the National Health and Nutrition Examination Survey

Contact

Alex Henderson

(202) 334-2031
akhenderson@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

State of the Science and Future Needs for Nonhuman Primate Model Systems - Meeting 7

December 1 - 2, 2022

Past

About

This meeting was a closed session. If you have specific questions regarding this meeting or this study, please reach out to Autumn Downey, Study Director, at NHPstudy@nas.edu.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Kenneth Ramos, Christian R. Abee, Ashutosh Agarwal, Szczepan Baran, Eliza Bliss-Moreau, Ricardo Carrion, J. Mark Cline, Myrtle Davis, Asgerally Fazleabas, Melanie Graham, Kelly Metcalf Pate, Steven Piantadosi, John Quackenbush, Peter Strick, and Jerrold Tannenbaum

The following topics were discussed in the closed sessions:

• The National Academies report review and communications processes
• Evidence supporting the committee’s conclusions
• The draft report chapters and next steps for their finalization in preparation for external review
• Study timeline

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

-Meeting agenda
-List of remaining issues to resolve for draft report chapters
-List of draft conclusions with supporting data
-Draft case studies
-Revised Chapter 4 outline
-Synthesis of the literature from the SCOPUS review of nonhuman primate primary research articles

Organizing Project

State of the Science and Future Needs for Nonhuman Primate Model Systems

Contact

Autumn Downey

NHPstudy@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

State of the Science and Future Needs for Nonhuman Primate Model Systems - Meeting 6

November 21, 2022

4:30 AM - 2:00 PM (ET)

Past

Materials

Speaker Biographies 11-21-2022

About

This meeting will be a virtual open and closed session. If you have specific questions regarding this meeting or this study, please reach out to Autumn Downey, Study Director, at NHPstudy@nas.edu.

Additional Information

Is it a Closed Session event?

Partially Closed

The following committee members were present at the closed sessions of the event

Kenneth Ramos, Christian R. Abee, Ashutosh Agarwal, Szczepan Baran, Eliza Bliss-Moreau, Ricardo Carrion, J. Mark Cline, Myrtle Davis, Asgerally Fazleabas, Melanie Graham, Kelly Metcalf Pate, John Quackenbush, Guo-li Ming, Steven Piantadosi, Peter Strick and Jerrold Tannenbaum

The following topics were discussed in the closed sessions:

-Key take aways from public session presentations and discussions
-Feedback on the draft report summary

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

- Written responses to committee questions from NIH
- Data provided by NIH related to priorities for nonhuman primate research, challenges, and infrastructure investments
- Letter from the NPRC directors regarding P51 grant funding
- Public comments related to the project
- Draft report Summary

Date of posting of Closed Session Summary:

November 23, 2022

Organizing Project

State of the Science and Future Needs for Nonhuman Primate Model Systems

Contact

Autumn Downey

NHPstudy@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Closed

Committee on Progress Toward Human Health and Community Resilience in the Gulf of Mexico Region: Meeting 7

November 4, 2022

8:30 AM - 4:30 PM (ET)

Past

About

This meeting is closed in its entirety.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

In-Person:
Maureen Y. Lichtveld, Chair
Richard A. Berman
Jane Owens Cage
Tamera Coyne-Beasley

Remote:
Anita Chandra
Carlos Martin
Robert Moffitt
Ronak Patel
Deanna Wathngton
Arlanda Williams

The following topics were discussed in the closed sessions:

Discussed committee assignments

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

N/A

Date of posting of Closed Session Summary:

November 04, 2022

Organizing Project

A Report Series on Progress Toward Human Health and Community Resilience in the Gulf of Mexico Region

Contact

Thelma Cox

(202) 233-1734
tcox@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research - November Call

November 2, 2022

2:00 PM - 4:00 PM (ET)

Past

About

The committee met to discuss the report, conclusions, and recommendations.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Charmaine Royal (co-chair)
Aravinda Chakravarti (co-chair)
Luisa Borrell
Katrina Claw
Rick Kittles
Sandra Soo-Jin Lee
Ann Morning
John Novembre
Molly Przeworski
Dorothy Roberts
Sarah Tishkoff
Genevieve Wojcik

The following topics were discussed in the closed sessions:

Report draft, conclusions, recommendations

Date of posting of Closed Session Summary:

November 03, 2022

Organizing Project

Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research

Contact

Sarah Beachy

populationdescriptors@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting

Virtual Stakeholder Dissemination Meeting: Building Resilience into the Nation’s Medical Product Supply Chains

October 24 - 25, 2022

Past

About

This virtual stakeholder meeting will bring together key stakeholders and relevant technical contributors across government agencies, academia, private industry, healthcare and public health for a facilitated discussion examining various medical product supply chain reports and recommendations, including the National Academies report, Building Resilience into the Nation’s Medical Product Supply Chains, that have been published. Please email Lisa Brown at lbrown@nas.edu for additional information.

Additional Information

Is it a Closed Session event?

Not Closed

Organizing Project

Security of America’s Medical Product Supply Chain

Contact

Contact us

MedSupplyChain@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting Closed

Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research - October Call

October 20, 2022

10:30 AM - 12:30 PM (ET)

Past

About

The committee met to discuss the report draft, conclusions, and recommendations.

Additional Information

Is it a Closed Session event?

Institution Closed

The following committee members were present at the closed sessions of the event

Charmaine Royal (co-chair)
Aravinda Chakravarti (co-chair)
Michael Bamshad
Luisa Borrell
Katrina Claw
Lance Gravlee
Mark Hayward
Rick Kittles
Sandra Soo-Jin Lee
Ann Morning
John Novembre
Molly Przeworski
Sarah Tishkoff
Genevieve Wojcik

The following topics were discussed in the closed sessions:

Report draft
Conclusions and recommendations

Date of posting of Closed Session Summary:

October 25, 2022

Organizing Project

Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research

Contact

Sarah Beachy

populationdescriptors@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

Meeting

Creating a Framework for Emerging Science, Technology, and Innovation in Health and Medicine: Meeting #4

October 18 - 19, 2022

Past

Materials

Speaker biographies

About

This will be a meeting of the committee developing a cross-sectoral governance framework for emerging science, technology, and innovation in health and medicine. As part of its meeting, the committee will hold a virtual information-gathering session on October 19 from approx. 9:00 am - noon ET via livestream.

Additional Information

Is it a Closed Session event?

Partially Closed

The following committee members were present at the closed sessions of the event

Keith Wailoo
Keith Yamamoto
Amy Abernethy
David Asch
Olveen Carrasquillo
Amitabh Chandra
Alta Charo
Hana El-Samad
Tony Hatch
Jianying Hu
Lisa Iezzoni
Alex John London
Debra Mathews
Shobita Parthasarathy
Timothy Persons
Kaushik S. Rajan
Krystal Tsosie

The following topics were discussed in the closed sessions:

The committee discussed its draft report outline, content areas, and emerging areas for conclusions and recommendations.

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

Draft report outline

Date of posting of Closed Session Summary:

October 26, 2022

Organizing Project

Creating a Framework for Emerging Science, Technology, and Innovation in Health and Medicine

Contact

Michael Berrios

MBerrios@nas.edu

Disclaimer

It is essential to the National Academies mission of providing evidence-based advice that participants in any of our meetings or events avoid political or partisan statements or commentary and maintain a culture of mutual respect. The statements and presentations during our meetings or events are solely those of the individual participants and do not necessarily represent the views of other participants or the National Academy of Sciences, which is a non-partisan, tax exempt organization that includes under its Charter the National Academy of Engineering and National Academy of Medicine, and that operates the National Research Council.

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Board on Health Sciences Policy

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Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research - October Call

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