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

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 Summary

Tuesday, February 18

Time	Talk	Speaker(s)
8:00 a.m. - 8:15 a.m.	Welcome and Introductions	Laura Lyman 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