House of Lords Inquiry on Genomic Medicine Visit to NIH

National Human Genome Research Institute

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


NIH Scientists Introduce British Lords to Genomic Medicine

House of Lords Inquiry on Genomic Medicine Visit to NIH
Lawton Chiles International House
National Institutes of Health
June 4-6, 2008

Meeting Summary

Cell, nucleus, DNA double-helixOn June 4-6, 2008 the National Human Genome Research Institute and the Fogarty International Center at the NIH hosted a delegation from the United Kingdom House of Lords Science and Technology Committee. The Committee, an investigative committee of the United Kingdom Parliament, is holding an inquiry into Genomic Medicine [parliament.uk] which aims to understand the state of scientific advances in Genomic Medicine, the opportunities for use of genomic data in healthcare delivery and the need for development of strategy and policy in this area. The delegation's visit to NIH was a part of the committee's work to gather evidence for the inquiry.

The delegation, comprised of Lord Patel (Chairman), Lord Colwyn, Baroness Perry of Southwark, Lord Warner, Professor Tim Aitman (Specialist Adviser) and Elisa Rubio (Clerk), met with over 35 scientists, clinicians, lawyers and policy makers over the course of the three day visit. Topics of discussion included: the state of the science in genomics; translation to clinical care; regulation and policy; bioinformatics; ethical, legal and social implications; training needs in genomics; and funding.


Meeting Agenda and Presentations

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Wednesday, June 4, 2008
8:00 a.m. Welcome and Introductions
8:15 a.m.
Session 1: State of the Science of Genomics
Francis Collins, M.D., Ph.D. : Genomics, Medicine and Society PDF
Teri Manolio, M.D., Ph.D.: State of the Science in Genomics: Genome-Wise Association and Complex Diseases PDF
Stephen Chanock, M.D.: Genome-Wide Association Studies in Cancer PDF
Jeff Schloss, Ph.D.: Next Generations of Sequencing Technologies PDF
10:20 a.m. Break
10:30 a.m. Session 2: Translation to Clinical Care I
Adam Felsenfeld, Ph.D.: 1000 Genomes: A Deep Catalog of Human Genetic Variation PDF
Muin Khoury, M.D., Ph.D.: Public Health Genomics: Translating Genome Discoveries into Population Health PDF
Leslie Biesecker, M.D.: ClinSeq: Challenges and Opportunities in Translational Genomics PDF
Leslie Biesecker, M.D.: ClinSeq: Challenges and Opportunities in Translational Genomics PDF
Mark Guyer, Ph.D.: The NHGRI Extramural Program and Translational Research PDF
12:35 p.m. Lunch
1:15 p.m. Session 3: Translation to Clinical Care II
Linda Avey: 23andMe PDF
Dietrich Stephan, Ph.D.: Risk Assessment for Complex Genetic Disease PDF
Larry Brody, Ph.D.: Personalized Risk Assessment: Promises, Pitfalls and the Path Forward PDF
Amy Miller, Ph.D.
3:20 p.m. Depart for NIH Chemical Genomics Center
4:00 - 5:30 p.m. Tour / Presentation of NIH Chemical Genomics Center
Christopher Austin, M.D., Ph.D.: The NIH Chemical Genomics Center: Bringing Piopharmaceutical Technologies to Academic Chemical Biology and Drug Discovery PDF
5:00 p.m. Adjourn

Thursday, June 5, 2008
8:00 a.m. Session 4: Regulation and Policy I: General
Derek Scholes, Ph.D.: Oversight of Genetic Tests: A Congressional Perspective PDF
M.K. Holohan, J.D.: The Genetic Information Nondiscrimination Act of 2008 PDF
Louis Jacques, M.D.: Medicare Coverage of Genomic Testing PDF
John Bartram, M.B.A., J.D.: House of Lords Inquiry on Genomic Medicine Visit - Impact of the Budget Process PDF
10:05 a.m. Break
10:20 a.m. Session 5 Regulation and Policy II: Oversight of Genetic Testing
Judy Yost, M.A., M.T.: CLIA & Genetic Testing Oversight PDF
Steve Gutman, M.D., M.B.A.: FDA Regulation of Genetic Tests PDF
Gail Javitt, J.D., M.P.H.: Oversight of Genetic Testing PDF
Phyllis Frosst, Ph.D.: Genetic Testing Oversight: 2008 SACGHS Report on GT Oversight PDF
12:25 p.m Lunch
1:15 p.m. Session 6: Bioinformatics
Jonathan Pevsner, Ph.D.: Bioinformatics PDF
Peter Good, Ph.D.: Bioinformatics and Computational Biology in Genetics Research PDF
Betsy Humphreys, M.L.S.: Bioinformatics Infrastructure: Education, Public Databases, Standards PDF
Samuel Aronson: IT Infrastructure Required to Scale Personalized Medicine PDF
3:20 p.m Break
3:35 p.m. Session 7: Miscellaneous
Laura Rodriguez, Ph.D.: Realizing the Potential: Building an Ethical Framework for Whole Genome Research Policy PDF
Jean McEwen, J.D., Ph.D.: Returning Results to Participants in Genetic Research Studies: Ethical Considerations PDF
Raju Kucherlapati, Ph.D.: Bioinformatics Infrastructure: Education, Public Databases, Standards PDF
5:40 p.m.

Adjourn

7:30 p.m. Delegate dinner

Friday, June 6, 2008
8:00 a.m. Session 8: Training Needs in Genomics
Joann Boughman, Ph.D.: Education and Training in Genetics and Genomics: A United States Perspective PDF
Holly Peay, M.S., CGC: Training Needs in Genomics Panel: An Overview of NCHPEG PDF
Jean Jenkins, Ph.D., R.N.: Current Genetic / Genomic Education: Priorities and Progress in Nursing PDF
Michael Rackover, P.A.C., M.S.: Overview of the Physician Assistant Profession and Medical Genetics Education PDF
10:05 a.m. Break
10:20 a.m. Session 9: Miscellaneous
Sharon Terry, M.A.: Public-Private Partnership: Revolutionizing Access PDF
Greg Downing D.O., Ph.D.: Establishing the Pathway to Personalized Health Care PDF
Lawrence J. Lesko, Ph.D.: Genomic Medicine: Regulatory Science Perspective PDF
Christine Seidman, M.D.
1:15 p.m. Wrap-up
2:00 p.m.

Adjourn


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Last Reviewed: March 27, 2011