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The Economics of Genomic Medicine: Workshop Summary (2013)

Chapter: Appendix A: Workshop Agenda

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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×

Appendix A

Workshop Agenda

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

 

Professor and Chair, Department of Bioethics and Humanities, University of Washington

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×

8:35 A.M.-8:40 A.M.

CHARGE TO WORKSHOP SPEAKERS AND PARTICIPANTS

 

W. Gregory Feero, Workshop Chair

 

Special Advisor to the Director, National Human Genome Research Institute

8:40 A.M.-10:10 A.M.

SESSION I: ECONOMICS AND GENOMICS

 

Moderators: W. Gregory Feero, National Human Genome Research Institute

 

Wylie Burke, University of Washington

8:40 A.M.-9:10 A.M.

Genomics, Population Health, and Technology

 

James P. Evans

 

Bryson Distinguished Professor of Genetics and Medicine, University of North Carolina at Chapel Hill

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

 

Professor, Pharmaceutical Outcomes Research and Policy Program, University of Washington

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

 

Wylie Burke, University of Washington

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×

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:

 

Siobhan M. Dolan

 

Associate Professor of Clinical Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine

 

Futurist:

 

Arthur L. Beaudet

 

Henry and Emma Meyer Professor and Chair, Department of Molecular and Human Genetics, Baylor College of Medicine

 

Patient:

 

Michelle Gilats

 

Genetic Counselor, Chicago Center for Jewish Genetics

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×

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

 

Panelists:

 

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

 

Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center

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

 

Wylie Burke, University of Washington

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.

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×

1:10 P.M.-1:40 P.M.

Stakeholder Presentations (10 minutes each)

 

Clinician:

 

Michael F. Murray

 

Clinical Chief, Genetics Division, Department of Medicine, Brigham and Women’s Hospital

 

Futurist:

 

Euan A. Ashley

 

Director, Center for Inherited Cardiovascular Disease, Stanford University School of Medicine

 

Patient:

 

John West

 

Chief Executive Officer, Personalis, Inc.

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

 

Panelists:

 

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

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
 

Scott Ramsey

 

Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center

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

 

Wylie Burke, University of Washington

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:

 

Kenneth Offit

 

Chief, Clinical Genetics Service, Department of Human Genetics, Memorial Sloan-Kettering Cancer Center

 

Futurist:

 

Stephen Eck

 

Vice President, Global Head of Medical Oncology, Astellas Pharma Global Development

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
 

Patient:

 

Richard Heimler

 

Lung Cancer Survivor and Advocate

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

 

Panelists:

 

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

 

Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center

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

5:20 P.M.

ADJOURN DAY 1

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×

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

 

Special Advisor to the Director, National Human Genome Research Institute

9:00 A.M.-10:00 A.M.

Stakeholder Perspectives on Research Questions

 

Moderator: Wylie Burke, University of Washington

 

Clinician:

 

James P. Evans

 

Bryson Distinguished Professor of Genetics and Medicine, University of North Carolina at Chapel Hill

 

Researcher:

 

Katrina Armstrong

 

Professor of Medicine; Associate Director, Abramson Cancer Center; Division Chief, Division of General Internal Medicine, Department of Medicine, University of Pennsylvania School of Medicine

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
 

Industry:

 

Thomas J. White

 

Chief Scientific Officer (Retired), Celera Corporation; Regents’ Lecturer, University of California, Berkeley

 

Patient:

 

Mary Lou Smith

 

Cofounder, Research Advocacy Network

 

Public Health:

 

Ned Calonge

 

President and Chief Executive Officer, The Colorado Trust

 

Hospital System:

 

Herbert Pardes

 

Professor of Psychiatry and Former Chief Executive Officer, New York-Presbyterian Hospital

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

 

Panelists:

 

Paul R. Billings

 

Chief Medical Officer, Life Technologies

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
 

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

 

Full Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center

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

 

Special Advisor to the Director, National Human Genome Research Institute

12:00 P.M.

WORKSHOP ADJOURNS

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 77
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 78
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 79
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 80
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 81
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 82
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 83
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 84
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 85
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2013. The Economics of Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18276.
×
Page 86
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The sequencing of the human genome and the identification of links between specific genetic variants and diseases have led to tremendous excitement over the potential of genomics to direct patient treatment toward more effective or less harmful interventions. Still, the use of whole genome sequencing challenges the traditional model of medical care where a test is ordered only when there is a clear indication for its use and a path for downstream clinical action is known. This has created a tension between experts who contend that using this information is premature and those who believe that having such information will empower health care providers and patients to make proactive decisions regarding lifestyle and treatment options.

In addition, some stakeholders are concerned that genomic technologies will add costs to the health care system without providing commensurate benefits, and others think that health care costs could be reduced by identifying unnecessary or ineffective treatments. Economic models are frequently used to anticipate the costs and benefits of new health care technologies, policies, and regulations. Economic studies also have been used to examine much more specific issues, such as comparing the outcomes and cost effectiveness of two different drug treatments for the same condition. These kinds of analyses offer more than just predictions of future health care costs. They provide information that is valuable when implementing and using new technologies. Unfortunately, however, these economic assessments are often limited by a lack of data on which to base the examination. This particularly affects health economics, which includes many factors for which current methods are inadequate for assessing, such as personal utility, social utility, and patient preference.

To understand better the health economic issues that may arise in the course of integrating genomic data into health care, the Roundtable on Translating Genomic-Based Research for Health hosted a workshop in Washington, DC, on July 17-18, 2012, that brought together economists, regulators, payers, biomedical researchers, patients, providers, and other stakeholders to discuss the many factors that may influence this implementation. The workshop was one of a series that the roundtable has held on this topic, but it was the first focused specifically on economic issues. The Economics of Genomic Medicine summarizes this workshop.

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