Appendix A
Workshop Agenda
Exploring the Current Landscape of Consumer Genomics—A Workshop
October 29, 2019
Keck Building of the National Academies
500 Fifth Street, NW
Room 100
Washington, DC 20001
| 8:30 a.m. | Opening Remarks |
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GEOFFREY GINSBURG, Roundtable Co-Chair |
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Director, Duke Center for Applied Genomics & Precision Medicine |
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Professor, Medicine, Pathology, and Biomedical Engineering Duke University Medical Center |
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MICHELLE PENNY, Roundtable Co-Chair |
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Head of Translational Genome Sciences |
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Biogen |
| 8:35 a.m. | Charge to Workshop Speakers and Participants |
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GREG FEERO, Workshop Co-Chair |
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Professor, Department of Community and Family Medicine |
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Geisel School of Medicine |
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Faculty, Maine Dartmouth Family Medical Residency Program |
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Associate Editor, Journal of the American Medical Association |
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CATHY WICKLUND, Workshop Co-Chair |
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Director, Graduate Program in Genetic Counseling |
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Past President, National Society of Genetic Counselors |
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Associate Professor, Feinberg School of Medicine, Center for Genetic Medicine |
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Northwestern University |
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| 8:50 a.m. | Opening Keynote |
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ROBERT NUSSBAUM |
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Chief Medical Officer |
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Invitae |
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| 9:10 a.m. | Clarifying Questions from Workshop Participants |
SESSION I: UNDERSTANDING CONSUMER GENOMICS UTILIZATION
Session Objectives:
- Explore how consumers are engaging (or not engaging) with direct-to-consumer and consumer-driven genomics services and whether there are lessons that can be learned about overall health engagement
- Learn how patients and providers are using genomic data procured through consumer genomics applications along with health data from other sources to inform overall health care decision making
Session Moderator: Tina Hesman Saey, Science News
| 9:15 a.m. | Consumer Genomics Engagement and Outlook |
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CINNAMON BLOSS |
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Associate Professor |
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Departments of Psychiatry and Family Medicine and Public Health |
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University of California, San Diego |
| 9:30 a.m. | Consumer Perspectives |
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SARA ALTSCHULE |
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Freelance Writer |
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Bustle Magazine |
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DOROTHY POMERANTZ |
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Managing Editor |
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FitchInk |
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| 10:00 a.m. | Panel Discussion with Speakers and Workshop Participants |
| 10:30 a.m. | Break |
SESSION II: EXPLORING THE ROLE OF DIVERSITY AND HEALTH DISPARITIES IN CONSUMER GENOMICS
Session Objectives:
- Discuss the lack of diversity in current genomics databases and biorepositories and how this may affect health disparities
- Explore how consumer genomics is (or is not) reaching diverse populations (e.g., racial, ethnic, geographic, socioeconomic) and the implications for health disparities
Session Moderator: Jacquelyn Taylor, New York University
| 10:45 a.m. |
JOYCE TUNG |
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Vice President, Research |
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23andMe |
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| 11:00 a.m. |
MALIA FULLERTON |
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Professor of Bioethics and Humanities |
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University of Washington School of Medicine |
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| 11:15 a.m. |
SHAWNEEQUA CALLIER |
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Associate Professor of Clinical Research and Leadership |
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The George Washington University |
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| 11:30 a.m. | SADIE HUTSON |
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Director, Cancer Genetics Program |
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Pikeville Medical Center |
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Assistant Dean, Graduate Programs |
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University of Tennessee, Knoxville |
| 11:45 a.m. | Panel Discussion with Speakers and Workshop Participants |
| 12:30 p.m. | Working Lunch |
SESSION III: INTEGRATION WITHIN SCIENTIFIC AND MEDICAL COMMUNITIES
Session Objectives:
- Discuss factors that may affect how consumer genomics data are integrated with clinical care
- Examine the challenges of and opportunities for using consumer genomics for research
- Explore emerging cross-sector collaborations and potential lessons that can be learned
Session Moderator: Bruce Blumberg, Kaiser Permanente School of Medicine
| 1:30 p.m. |
ANDREW SINGLETON |
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Senior Investigator |
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Laboratory of Neurogenetics |
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National Institute on Aging |
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| 1:45 p.m. |
SIOBHAN DOLAN |
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Professor and Vice Chair for Research |
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Department of Obstetrics and Gynecology and Women’s Health |
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Albert Einstein College of Medicine |
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| 2:00 p.m. |
DANIELLE BONADIES |
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Director of Genetics |
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My Gene Counsel |
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| 2:15 p.m. |
MATTHEW FERBER |
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Associate Professor of Laboratory Medicine and Pathology |
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Consultant, Division of Laboratory Genetics and Genomics, Department of Laboratory Medicine and Pathology |
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Mayo Clinic |
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| 2:30 p.m. | Panel Discussion with Speakers and Workshop Participants |
| 3:00 p.m. | Break |
SESSION IV: REGULATORY AND HEALTH POLICY ISSUES
Session Objectives:
- Address data sharing, privacy, and security issues in the context of consumer genomics testing
- Explore the landscape of emerging regulatory issues in consumer genomics
Session Moderator: Victoria M. Pratt, Association for Molecular Pathology
| 3:15 p.m. |
AMY MCGUIRE |
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Leon Jaworski Professor Biomedical Ethics |
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Director, Center for Medical Ethics and Health Policy |
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Baylor College of Medicine |
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| 3:30 p.m. |
GAIL JAVITT |
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Member, Health Care and Life Sciences Practice |
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Epstein Becker Green |
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| 3:45 p.m. |
JORDAN LASER |
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Senior Director |
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Cytogenetics and Molecular Pathology of Pathology and Laboratory Medicine |
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Long Island Jewish Medical Center |
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| 4:00 p.m. | Panel Discussion with Speakers and Workshop Participants |
SESSION V: HOW CAN CONSUMER GENOMICS BE BETTER INTEGRATED TO IMPROVE HEALTH?
Session Objectives:
- What is the role of consumer genomics in the health care system in the next 5 years? 10 years?
- What is viewed as actionable information by a health system?
- Are health systems, consumers, and providers prepared for downstream challenges? If not, are there opportunities for ensuring that consumer genomics is more effective in clinical care?
- How can we make consumer genomics the best it can be for consumers and systems?
- What needs to be better understood about low-cost consumer genomics and the implications for access and health disparities?
Session Moderator: Huntington Willard, Geisinger National Precision Health
| 4:30 p.m. | Reflections on the Day and Next Steps |
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DANIELLE BONADIES |
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SHAWNEEQUA CALLIER |
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SIOBHAN DOLAN |
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ROBERT NUSSBAUM |
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DOROTHY POMERANTZ |
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| Additional Discussant: | |
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TIMOTHY STENZEL |
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Director, Office of In Vitro Diagnostics and Radiological Health |
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Office of Product Evaluation and Quality |
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Center for Devices and Radiological Health |
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Food and Drug Administration |
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| 5:00 p.m. | Final Discussion with Workshop Participants |
| 5:20 p.m. | Final Remarks from Workshop Co-Chairs |
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GREG FEERO, Workshop Co-Chair |
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Professor, Department of Community and Family Medicine |
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Geisel School of Medicine |
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Faculty, Maine Dartmouth Family Medical Residency Program |
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Associate Editor, Journal of the American Medical Association |
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CATHY WICKLUND, Workshop Co-Chair |
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Director, Graduate Program in Genetic Counseling |
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Past President, National Society of Genetic Counselors |
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Associate Professor, Feinberg School of Medicine, Center for Genetic Medicine |
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Northwestern University |
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| 5:35 p.m. | Adjourn |
| Networking Reception |
