Defining Research Needs and Assessing Implications for Research Following the Release of the ACMG Recommendations for Incidental Findings in Clinical Genome Sequencing: Agenda

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services




Defining Research Needs and Assessing Implications for Research Following the Release of the ACMG Recommendations for Incidental Findings in Clinical Genome Sequencing

NIH Intramural Sequencing Center
Rockville, Md.

February 18-19, 2014

Agenda

Workshop SummaryPDF file New
Tuesday, February 18
Time Talk Speaker(s)
8:00 a.m. - 8:15 a.m. Welcome and Introductions Laura Rodriguez, Ph.D.
NHGRI
8:15 a.m. - 8:30 a.m. Charge and Goals for the Meeting Benjamin Berkman, J.D., M.P.H.
NHGRI
8:30 a.m. - 9:00 a.m. Overview, Context, and Next Steps for ACMG Recommendations James Evans, M.D., Ph.D.
University of North Carolina at Chapel Hill
9:00 a.m. - 10:00 a.m. Professional Society Perspectives Elaine Lyon, Ph.D.
University of Utah

Joseph McInerney, M.A., M.S.
American Society of Human Genetics

Kelly Ormond, M.S., C.G.C.
Stanford University
10:00 a.m. - 10:30 a.m. Lessons Learned from other Fields - Radiology R. Nick Bryan, M.D., Ph.D
University of Pennsylvania Health System
10:30 a.m. - 11:00 a.m. BREAK
11:00 a.m. - 12:30 p.m. Research Questions Related to Normative Issues When Moving from Research to Clinical Care Benjamin Berkman, J.D., M.P.H. (Moderator)
NHGRI

Jeremy Garrett, Ph.D.
Children's Mercy Hospital

Christine Grady, M.S.N., Ph.D.
NIH Clinical Center

Scott Kim, M.D., Ph.D.
NIH Clinical Center
 
12:30 p.m. - 1:30 p.m. Working Lunch - Incidental Findings in Exome/Genome Sequencing
Are we dealing with a completely novel challenge or can we draw on pre-existing parallels and paradigms in clinical medicine?
Robert Nussbaum, M.D.
University of California, San Francisco
1:30 p.m. - 2:15 p.m. Participant & Participant Protection Perspectives
 
Participant Presentations

IRB Presentations
Laura Rodriguez, Ph.D. (Moderator)
NHGRI

Wendy Chung, M.D., Ph.D.
Columbia University

Jeffrey Botkin, M.D., M.P.H.
Unviersity of Utah

Benjamin Berkman, J.D., M.P.H.
NHGRI
2:15 p.m. - 3:45 p.m. BREAK
3:45 p.m. - 4:15 p.m.

Research Questions Related to Participant Perspectives and the Ethics Issues when Moving from Research to Clinical Care

Gail Henderson, Ph.D.
University of North Carolina at Chapel Hill

Barbara Bernhardt, M.S., C.G.C.
University of Pennsylvania

Laura Beskow, M.P.H., Ph.D.
Duke University
4:15 p.m. - 5:45p.m.  Wrap-up of Day 1 and Plans for Day 2 Laura Rodriguez, Ph.D.
NHGRI
Wednesday, February 19
Time Talk Speaker(s)
8:00 a.m. - 8:15 a.m. Recap of Day 1 and Reminder of Charge Benjamin Berkman, J.D., M.P.H.
NHGRI
8:30am - 10:00 a.m. Implementation Issues to Consider Pearl O'Rourke (Moderator)
Partners Healthcare Systems

Robert Green, M.D., M.P.H.
Brigham and Women's Hospital

Katie Lewis, Sc.M.
NHGRI

Jonathan Sellors
UK Biobank
10:00 a.m. - 10:30 a.m. BREAK
10:30 a.m. - 11:30 a.m. Factors to consider in determining how, if at all, genomic research projects should respond to the ACMG Recommendations  Karen Rothenberg, J.D., M.P.A.
NHGRI

Benjamin Berkman, J.D., M.P.H.
NHGRI
11:30 a.m. - 12:15 p.m. Synthesizing Research Needs and Opportunities
Normative, Clinical Research, Participant-focused, Implementation
Teri Manolio, M.D., Ph.D. (Moderator)
NHGRI
12:15 p.m. - 12:45 p.m. Synthesizing Policy Needs and Issues to Develop
Policy, Regulatory, Consensus-Building, Resources & Best Practices
Laura Rodriguez, Ph.D. (Moderator)
NHGRI
12:45 p.m. - 1:00 p.m. Summary and Next Steps for NHGRI Laura Rodriguez, Ph.D.
NHGRI

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Last Updated: May 5, 2014