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Workshop on Sharing Aggregate Data

Event Details

On May 19-20, 2016, the National Human Genome Research Institute (NHGRI) hosted a two-day workshop where participants were asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users.


NISC, 5th Floor Conference Room


May 19

9:00 a.m.

Welcome and Introductions


9:20 a.m.

Charge and Goals for the Meeting


9:30 a.m.

Framing the Scientific and Policy Opportunities

Goncalo Abecasis
Sharon Terry
Laura Lyman Rodriguez

10:15 a.m.

Current State of Aggregate Genomic Data Management Practices, Access, & Opportunity Costs of Not Sharing

Moderator: Steve Sherry

Daniel MacArthur
Heidi Rehm
Jill Dolinsky

11:45 a.m.



12:00 p.m.

Risks and Harms Potentially and Realistically Posed by Aggregate Genomic Data (and Current Policies) Moderator: Laura Lyman Rodriguez

David Craig
Sandra Soo-Jin
Lee Mary Majumder

1:00 p.m.

Lunch (Cafeteria)


1:20 p.m.

Working Lunch: Degrees of Sensitivity for Aggregate Genomic Data

Stephanie O.M. Dyke

2:00 p.m.

Measuring and ameliorating Risks from Use of Aggregate Genomic Data

Moderator: Heidi Sofia

Genevieve Wojcik
Dixie Baker
Knox Carey

3:00 p.m.

How to Balance Opportunity with Potential Risk

Moderator: Carolyn Hutter

Ellen Wright Clayton
Lucila Ohno-Machado Robert Shelton

4:00 p.m.



4:15 p.m.

Perspectives on Balancing Data Sharing Risks (Beyond Genomic Data)

Moderator: Dina Paltoo

George Alter
Janice Abraham
Cora Han

5:15 p.m.

Wrap Up of Day 1 and Pose Questions for Day 2


May 20

9:00 a.m.

Synthesis of Defining Principles

Mike Boehnke
Goncalo Abecasis

10:15 a.m.



10:30 a.m.

Policies Needed

John Wilbanks

11:30 a.m.

Summary of Recommendations & Action Items

Heidi Rehm

12:45 p.m.

Wrap Up of Day 2


Last updated: July 24, 2019