Maximizing the Impact of Public Engagement in Policy Development: Informing the Use of Personal Data in Biomedical Research

The NIH Office of Science Policy (OSP) will host a webinar to discuss its approach to maximizing the impact of public engagement in the policy making process. The webinar will address the recent recommendations of the Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) and OSP’s commitment to engage with individuals and communities when considering policy matters.

Webcast

https://videocast.nih.gov/watch=53839

Agenda

Draft Agenda

Materials

(Some background documents have been provided in Spanish, as a community conversation was held in Spanish)

Webinar Summary and Community Conversation Summary Feedback
Webinar Summary and Community Conversation Summary Feedback (Spanish)

Contact

For general questions:

Email: SciencePolicy@od.nih.gov

ASHG Session: What You Need to Know About the NIH Genomic Data Sharing Policy

THIS EVENT IS RESERVED FOR PARTICIPANTS ATTENDING THE AMERICAN SOCIETY FOR HUMAN GENETICS (ASHG) ANNUAL CONFERENCE. YOU MUST BE REGISTERED TO ATTEND THE ASHG ANNUAL MEETING TO REGISTER FOR THIS SESSION

This session will give an overview of the NIH Genomic Data Sharing (GDS) Policy that sets forth expectations that ensure the broad and responsible sharing of large-scale human or non-human data. The GDS Policy applies to all NIH-funded research that generates large-scale human or non-human genomic data as well as the use of these data for subsequent research. The ancillary meeting will also provide in-depth understanding of GDS Policy privacy protection when working with human genomic data and navigate attendees through the recent implementation changes to harmonize with the NIH Data Management and Sharing (DMS) Policy (NOT-OD-22-198, NOT-OD-21-013). This is a great opportunity for ASHG attendees to meet experts from NIH and discuss GDS Policy questions.  

Speakers: Cheryl Jacobs, Ph.D., Team Lead, NIH Genomic Data Sharing Policy, Office of Science Policy and Julia Slutsman, Ph.D., Director, NIH Genomic Data Sharing Policy Implementation, Office of Extramural Research.  Website: https://sharing.nih.gov/

Registration

There is no cost to attend this event.  However, pre-registration is strongly recommended.  To register for the event, please provide the information below.

Contact

For general questions:

Email: SciencePolicy@od.nih.gov

Contact: Danyelle Winchester
Email: danyelle.winchester2@nih.gov  

Novel and Exceptional Technology and Research Advisory Committee Meeting

The Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) will hold a virtual meeting to discuss the draft report of the Working Group on Data Science and Emerging Technology.  In addition, the meeting will include a discussion of next steps for the Committee (Federal Register notice).

Registration is not required to view the webcast.

The materials below contain content that is not fully supported by assistive technology. For accessibility assistance with these files, please contact: SciencePolicy@od.nih.gov.

NIH Videocast

https://videocast.nih.gov/watch=52218

Agenda

NExTRAC August 29, 2023 Agenda

Minutes

NIH NExTRAC August 29, 2023 Meeting Minutes

Meeting Materials

Draft Report of the NExTRAC WG on Data Science and Emerging Technology*

*Note: The NExTRAC working group’s report is a draft, pre-decisional document. The NExTRAC publicly discussed and endorsed the draft findings and recommendations with minor modifications to the report at the August 29, 2023 meeting. The final NExTRAC report was transmitted to the Acting NIH Director and can be found here.

Public Comments

Members of the public may request to make an oral public comment or may submit written public comments. To sign up to make an oral public comment, please submit your name, affiliation, and short description of the oral comment to SciencePolicy@od.nih.gov by August 25, 2023. Once all time slots are filled, only written comments will be accepted.

Any interested person may file written comments by e-mailing SciencePolicy@od.nih.gov by August 25, 2023. The statement should include the name, address, telephone number and, when applicable, the business or professional affiliation of the interested person. Other than name and contact information, please do not include any personally identifiable information or any information that you do not wish to make public. Proprietary, classified, confidential, or sensitive information should not be included in your comments. Please note that any comments NIH receives may be posted unredacted to the Office of Science Policy website.

Additional Files

Presentation – Draft Report of the Working Group on Data Science and Emerging Technology
Presentation – ENGAGE Charge to the NExTRAC

NIH Workshop on Catalyzing the Development of Novel Alternatives Methods

The National Institutes of Health (NIH) will hold a virtual workshop on August 21, 2023, on approaches, challenges, and opportunities relating to the development of Novel Alternative Methods (NAMs).  The workshop will also feature discussion on identifying incentives and barriers to successful implementation of NAMs technologies. 

Webcast

https://videocast.nih.gov/watch=49776

Agenda

Meeting Agenda

Registration Information

Pre-registration for viewing the workshop is requested.  There is no registration fee associated with this workshop.  For details on how to register, please see: https://web.cvent.com/event/ca67c4ad-b795-4b11-85f4-97bba96113b0/summary

Supplementary Information

Advisory Committee to the NIH Director Working Group on Catalyzing the Development and Use of Novel Alternative Methods to Advance Biomedical Research                                                                                                                                          

Request for Information (RFI): Catalyzing the Development and Use of Novel Alternative Methods to Advance Biomedical Research (Comments must be received by September 5, 2023)