Assessing the Economics of Genomic Medicine: A Workshop July 17-18, 2012
National Academy of Sciences Building
2101 Constitution Avenue, NW
Washington, DC 20037
WORKSHOP OBJECTIVE
To advance discussions around the clinical implementation of genetic and genomic technologies by examining costs associated with the development and use of genetic and genomic information in the care of individual patients.
Day 1 |
July 17, 2012 |
7:45 A.M.-8:30 A.M. |
WORKING BREAKFAST |
8:30 A.M.-8:35 A.M. |
WELCOMING REMARKS |
Wylie Burke, Roundtable Co-Chair, Meeting Moderator |
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Professor and Chair, Department of Bioethics and Humanities, University of Washington |
8:35 A.M.-8:40 A.M. |
CHARGE TO WORKSHOP SPEAKERS AND PARTICIPANTS |
W. Gregory Feero, Workshop Chair |
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Special Advisor to the Director, National Human Genome Research Institute |
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8:40 A.M.-10:10 A.M. |
SESSION I: ECONOMICS AND GENOMICS |
Moderators: W. Gregory Feero, National Human Genome Research Institute |
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Wylie Burke, University of Washington |
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8:40 A.M.-9:10 A.M. |
Genomics, Population Health, and Technology |
James P. Evans |
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Bryson Distinguished Professor of Genetics and Medicine, University of North Carolina at Chapel Hill |
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9:10 A.M.-9:25 A.M. |
Discussion |
9:25 A.M.-9:55 A.M. |
Intersection of Genomics and Health Economics |
David L. Veenstra |
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Professor, Pharmaceutical Outcomes Research and Policy Program, University of Washington |
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9:55 A.M.-10:10 A.M. |
Discussion |
10:10 A.M.-10:25 A.M. |
BREAK |
10:25 A.M.-12:20 P.M. |
SESSION II: PRECONCEPTION CARE AND SEQUENCING |
Moderators: Robert L. Nussbaum, University of California, San Francisco, School of Medicine |
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Wylie Burke, University of Washington |
10:25 A.M.-10:30 A.M. |
Case Presentation: In 2012 a 35-year-old healthy Ashkenazi Jewish female smoker is seen for a preconception visit. Under the current standard care model, targeted carrier status testing is offered. In terms of high effect size variations that would be detected by traditional genetic testing, she is found to be a carrier for Tay-Sachs. In addition, if testing were extended in this scenario beyond what might be considered to be current standard of care, she would be found to harbor a prothrombin gene mutation, as well as variations in CYP2C9 and VKORC, indicating that she is likely to be highly sensitive to warfarin anticoagulation. She is also homozygous for APOE4, but does not have familial hypercholesterolemia. She can be expected to have lower risk variants and variants of unknown significance in accordance with expected population frequencies for the conditions under consideration. |
10:30 A.M.-11:00 A.M. |
Stakeholder Presentations (10 minutes each) |
Clinician: |
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Siobhan M. Dolan |
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Associate Professor of Clinical Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine |
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Futurist: |
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Arthur L. Beaudet |
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Henry and Emma Meyer Professor and Chair, Department of Molecular and Human Genetics, Baylor College of Medicine |
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Patient: |
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Michelle Gilats |
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Genetic Counselor, Chicago Center for Jewish Genetics |
11:00 A.M.-11:20 A.M. |
Discussion with Speakers and Participants |
11:20 A.M.-12:20 P.M. |
Economics Panel Discussion |
Moderator: David L. Veenstra, University of Washington |
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Panelists: |
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Paul R. Billings |
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Chief Medical Officer, Life Technologies |
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Scott Grosse |
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Research Economist and Associate Director for Health Services Research and Evaluation, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention |
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Scott Ramsey |
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Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center |
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12:20 P.M.-1:05 P.M. |
LUNCH |
1:05 P.M.-3:00 P.M. |
SESSION III: UNPROVOKED DVT/ PULMONARY EMBOLISM |
Moderators: Frederick Chen, University of Washington |
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Wylie Burke, University of Washington |
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1:05 P.M.-1:10 P.M. |
Case Presentation: The individual is seen at 40 years of age with progressive left lower extremity swelling and pain. Evaluation reveals an unprovoked deep vein thrombosis in her left lower extremity. She will be treated as an outpatient with low-molecular-weight heparin and warfarin. Targeted testing includes CYP2C9 and VKORC gene analysis. |
1:10 P.M.-1:40 P.M. |
Stakeholder Presentations (10 minutes each) |
Clinician: |
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Michael F. Murray |
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Clinical Chief, Genetics Division, Department of Medicine, Brigham and Women’s Hospital |
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Futurist: |
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Euan A. Ashley |
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Director, Center for Inherited Cardiovascular Disease, Stanford University School of Medicine |
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Patient: |
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John West |
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Chief Executive Officer, Personalis, Inc. |
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1:40 P.M.-2:00 P.M. |
Discussion with Speakers and Participants |
2:00 P.M.-3:00 P.M. |
Economics Panel Discussion |
Moderator: David L. Veenstra, University of Washington |
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Panelists: |
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Paul R. Billings |
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Chief Medical Officer, Life Technologies |
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Scott Grosse |
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Research Economist and Associate Director for Health Services Research and Evaluation, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention |
Scott Ramsey |
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Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center |
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3:00 P.M.-3:15 P.M. |
BREAK |
3:15 P.M.-5:10 P.M. |
SESSION IV: CANCER CARE AND SEQUENCING |
Moderators: Timothy J. Ley, Washington University School of Medicine |
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Wylie Burke, University of Washington |
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3:15 P.M.-3:20 P.M. |
Case Presentation: The individual is seen at age 50 with cough, dyspnea, and chest discomfort. Evaluation reveals a lung mass; bronchoscopy and biopsy reveal a non-small-cell lung cancer. Her tumor is found to have variations that allow the use of targeted therapy, and with treatment the patient goes into remission. |
3:20 P.M.-3:50 P.M. |
Stakeholder Presentations (10 minutes each) |
Clinician: |
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Kenneth Offit |
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Chief, Clinical Genetics Service, Department of Human Genetics, Memorial Sloan-Kettering Cancer Center |
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Futurist: |
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Stephen Eck |
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Vice President, Global Head of Medical Oncology, Astellas Pharma Global Development |
Patient: |
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Richard Heimler |
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Lung Cancer Survivor and Advocate |
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3:50 P.M.-4:10 P.M. |
Discussion with Speakers and Participants |
4:10 P.M.-5:10 P.M. |
Economics Panel Discussion |
Moderator: David L. Veenstra, University of Washington |
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Panelists: |
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Paul R. Billings |
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Chief Medical Officer, Life Technologies |
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Scott Grosse |
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Research Economist and Associate Director for Health Services Research and Evaluation, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention |
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Scott Ramsey |
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Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center |
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5:10 P.M.-5:20 P.M. |
WRAP-UP DAY 1 |
W. Gregory Feero, Workshop Chair |
|
Special Advisor to the Director, National Human Genome Research Institute |
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5:20 P.M. |
ADJOURN DAY 1 |
Day 2 |
July 18, 2012 |
7:45 A.M.-8:30 A.M. |
WORKING BREAKFAST |
8:30 A.M.-8:35 A.M. |
WELCOMING REMARKS |
W. Gregory Feero, Workshop Chair |
|
Special Advisor to the Director, National Human Genome Research Institute |
|
8:35 A.M.-11:45 A.M. |
Session V: Research Economics |
8:35 A.M.-9:00 A.M. |
Overview of Major Themes and Research Questions from Day 1 |
W. Gregory Feero, Workshop Chair |
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Special Advisor to the Director, National Human Genome Research Institute |
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9:00 A.M.-10:00 A.M. |
Stakeholder Perspectives on Research Questions |
Moderator: Wylie Burke, University of Washington |
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Clinician: |
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James P. Evans |
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Bryson Distinguished Professor of Genetics and Medicine, University of North Carolina at Chapel Hill |
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Researcher: |
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Katrina Armstrong |
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Professor of Medicine; Associate Director, Abramson Cancer Center; Division Chief, Division of General Internal Medicine, Department of Medicine, University of Pennsylvania School of Medicine |
Industry: |
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Thomas J. White |
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Chief Scientific Officer (Retired), Celera Corporation; Regents’ Lecturer, University of California, Berkeley |
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Patient: |
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Mary Lou Smith |
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Cofounder, Research Advocacy Network |
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Public Health: |
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Ned Calonge |
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President and Chief Executive Officer, The Colorado Trust |
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Hospital System: |
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Herbert Pardes |
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Professor of Psychiatry and Former Chief Executive Officer, New York-Presbyterian Hospital |
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10:00 A.M.-10:30 A.M. |
Audience Perspectives |
10:30 A.M.-10:45 A.M. |
BREAK |
10:45 A.M.-11:45 A.M. |
Economics Panel Discussion |
Moderator: David L. Veenstra, University of Washington |
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Panelists: |
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Paul R. Billings |
|
Chief Medical Officer, Life Technologies |
Scott Grosse |
|
Research Economist and Associate Director for Health Services Research and Evaluation, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention |
|
Scott Ramsey |
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Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center |
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11:45 A.M.-12:00 P.M. |
SESSION VI: WRAP-UP |
11:45 A.M.-12:00 P.M. |
Concluding Remarks |
W. Gregory Feero, Workshop Chair |
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Special Advisor to the Director, National Human Genome Research Institute |
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12:00 P.M. |
WORKSHOP ADJOURNS |