NIH Scientists Introduce British Lords to Genomic Medicine

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

• Summary
• Agenda and Presentations

Meeting Summary

On 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.

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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 Teri Manolio, M.D., Ph.D.: State of the Science in Genomics: Genome-Wise Association and Complex Diseases Stephen Chanock, M.D.: Genome-Wide Association Studies in Cancer Jeff Schloss, Ph.D.: Next Generations of Sequencing Technologies 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 Muin Khoury, M.D., Ph.D.: Public Health Genomics: Translating Genome Discoveries into Population Health Leslie Biesecker, M.D.: ClinSeq: Challenges and Opportunities in Translational Genomics Leslie Biesecker, M.D.: ClinSeq: Challenges and Opportunities in Translational Genomics Mark Guyer, Ph.D.: The NHGRI Extramural Program and Translational Research 12:35 p.m. Lunch 1:15 p.m. Session 3: Translation to Clinical Care II Linda Avey: 23andMe Dietrich Stephan, Ph.D.: Risk Assessment for Complex Genetic Disease Larry Brody, Ph.D.: Personalized Risk Assessment: Promises, Pitfalls and the Path Forward 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 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 M.K. Holohan, J.D.: The Genetic Information Nondiscrimination Act of 2008 Louis Jacques, M.D.: Medicare Coverage of Genomic Testing John Bartram, M.B.A., J.D.: House of Lords Inquiry on Genomic Medicine Visit - Impact of the Budget Process 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 Steve Gutman, M.D., M.B.A.: FDA Regulation of Genetic Tests Gail Javitt, J.D., M.P.H.: Oversight of Genetic Testing Phyllis Frosst, Ph.D.: Genetic Testing Oversight: 2008 SACGHS Report on GT Oversight 12:25 p.m Lunch 1:15 p.m. Session 6: Bioinformatics Jonathan Pevsner, Ph.D.: Bioinformatics Peter Good, Ph.D.: Bioinformatics and Computational Biology in Genetics Research Betsy Humphreys, M.L.S.: Bioinformatics Infrastructure: Education, Public Databases, Standards Samuel Aronson: IT Infrastructure Required to Scale Personalized Medicine 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 Jean McEwen, J.D., Ph.D.: Returning Results to Participants in Genetic Research Studies: Ethical Considerations Raju Kucherlapati, Ph.D.: Bioinformatics Infrastructure: Education, Public Databases, Standards 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 Holly Peay, M.S., CGC: Training Needs in Genomics Panel: An Overview of NCHPEG Jean Jenkins, Ph.D., R.N.: Current Genetic / Genomic Education: Priorities and Progress in Nursing Michael Rackover, P.A.C., M.S.: Overview of the Physician Assistant Profession and Medical Genetics Education 10:05 a.m. Break 10:20 a.m. Session 9: Miscellaneous Sharon Terry, M.A.: Public-Private Partnership: Revolutionizing Access Greg Downing D.O., Ph.D.: Establishing the Pathway to Personalized Health Care Lawrence J. Lesko, Ph.D.: Genomic Medicine: Regulatory Science Perspective Christine Seidman, M.D. 1:15 p.m. Wrap-up 2:00 p.m. Adjourn

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