Senior Oversight Committee (SOC) Charge and Roster

Purpose

The Senior Oversight Committee (SOC) advises the NIH Director on the development, implementation, management, and evaluation of policies to promote the sharing of genomic research data. As a trans-NIH committee, the SOC serves to promote standard genomic data sharing practices and operating procedures across the NIH Institutes and Centers (ICs) that protect the interests of study participants and sustain public trust in the research enterprise. The SOC is responsible for the implementation and stewardship of NIH GWAS policies, including the oversight of the data security and data management practices of the database of Genotypes and Phenotypes (dbGaP) and the policies and procedures for genomic data submission and access across ICs.

Function

The SOC charge encompasses a broad range of activities, including all matters related to ensuring the effectiveness of NIH’s GWAS policies and the procedures necessary to promote their robust and consistent implementation across the NIH. The SOC is informed in its activities by the Technical Standards and Data Submission (TSDS) Steering Committee and the Participant Protection and Data Management (PPDM) Steering Committee. The SOC shall provide analyses and make recommendations to the NIH Director on policy or technical issues related to GWAS policies and practices. Recommendations may be based on its own analyses or on considerations of recommendations from the Steering Committees. As needed, the SOC will work with the NIH Advisory Committee to the Director to gather independent advice on GWAS policies and practices and to discuss issues or concerns regarding the effectiveness of NIH GWAS policies.

As needed, SOC special working groups or subcommittees may be appointed by the Co-Chairs for specific tasks and time periods.

Membership

The SOC is composed of senior NIH and IC leadership as follows:

• At least five IC Directors or their delegates
• Deputy Director for Extramural Research, NIH (DDER)
• Deputy Director for Intramural Research, NIH (DDIR)
• Associate Director for Science Policy, NIH (ADSP)
• NIH Legal Advisor(Ex-officio)

The SOC is co-chaired by an IC Director, who will be appointed by the NIH Director, and the Associate Director for Science Policy, NIH. Delegates serving on behalf of IC Directors generally will be the Deputy Director or at the equivalent level. Staff support for the SOC and other GWAS Policy activities generally will be provided through the NIH Director. Five members of the SOC shall represent a quorum for conducting business.

Meetings

Regular meetings of the SOC will be held at least quarterly and more frequently if needed. Special meetings may be called by the SOC Co-Chairs with sufficient notice to the members. SOC matters may also be addressed between meetings via electronic and written communications. GWAS Policy staff will be responsible for facilitating the preparation of meeting summaries for approval by the Co-Chairs and distribution to the SOC members.

Sunset Provisions

The SOC charge will undergo periodic review at least every three years. Any major amendments to the charter and termination of the SOC require the approval of the NIH Director.

SOC Members:

Eric D. Green, M.D., Ph.D. (Co-Chair )
Director, NHGRI

Amy Patterson, M.D. (Co-Chair )
Associate Director for Science Policy, NIH

Hugh Auchincloss, M.D.
Principal Deputy Director, NIAID

Stephen J. Chanock, M.D.
Chief, NCI Laboratory of Translational Genomics

Michael M. Gottesman, M.D.
Deputy Director for Intramural Research, NIH

Alan Guttmacher, M.D.
Director, NICHD

Thomas R. Insel, M.D.
Director, NIMH

Story Landis, Ph.D.
Director, NINDS

Sally Rockey, Ph.D.
Deputy Director for Extramural Research, NIH

Susan Shurin, M.D.
Acting Director, NHLBI

Ex Officio

Barbara M. McGarey, J.D.
NIH Legal Advisor, OGC

Principal SOC Staff

Dina Paltoo, Ph.D., M.P.H.
Director, Genetics, Health, and Society Program, OSP

Laura Lyman Rodriguez, Ph.D.
Director, Division of Policy, Communications, and Education, NHGRI