Exploring the Current Landscape of Consumer Genomics: Proceedings of a Workshop (2020)
Chapter: Appendix A: Workshop Agenda
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 |
GEOFFREY GINSBURG, Roundtable Co-Chair | |
Director, Duke Center for Applied Genomics & Precision Medicine | |
Professor, Medicine, Pathology, and Biomedical Engineering Duke University Medical Center | |
MICHELLE PENNY, Roundtable Co-Chair | |
Head of Translational Genome Sciences | |
Biogen |
| 8:35 a.m. | Charge to Workshop Speakers and Participants |
GREG FEERO, Workshop Co-Chair | |
Professor, Department of Community and Family Medicine | |
Geisel School of Medicine | |
Faculty, Maine Dartmouth Family Medical Residency Program | |
Associate Editor, Journal of the American Medical Association | |
CATHY WICKLUND, Workshop Co-Chair | |
Director, Graduate Program in Genetic Counseling | |
Past President, National Society of Genetic Counselors | |
Associate Professor, Feinberg School of Medicine, Center for Genetic Medicine | |
Northwestern University | |
| 8:50 a.m. | Opening Keynote |
ROBERT NUSSBAUM | |
Chief Medical Officer | |
Invitae | |
| 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 |
CINNAMON BLOSS | |
Associate Professor | |
Departments of Psychiatry and Family Medicine and Public Health | |
University of California, San Diego |
| 9:30 a.m. | Consumer Perspectives |
SARA ALTSCHULE | |
Freelance Writer | |
Bustle Magazine | |
DOROTHY POMERANTZ | |
Managing Editor | |
FitchInk | |
| 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 |
Vice President, Research | |
23andMe | |
| 11:00 a.m. | MALIA FULLERTON |
Professor of Bioethics and Humanities | |
University of Washington School of Medicine | |
| 11:15 a.m. | SHAWNEEQUA CALLIER |
Associate Professor of Clinical Research and Leadership | |
The George Washington University | |
| 11:30 a.m. | SADIE HUTSON |
Director, Cancer Genetics Program | |
Pikeville Medical Center | |
Assistant Dean, Graduate Programs | |
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 |
Senior Investigator | |
Laboratory of Neurogenetics | |
National Institute on Aging | |
| 1:45 p.m. | SIOBHAN DOLAN |
Professor and Vice Chair for Research | |
Department of Obstetrics and Gynecology and Women’s Health | |
Albert Einstein College of Medicine | |
| 2:00 p.m. | DANIELLE BONADIES |
Director of Genetics | |
My Gene Counsel | |
| 2:15 p.m. | MATTHEW FERBER |
Associate Professor of Laboratory Medicine and Pathology | |
Consultant, Division of Laboratory Genetics and Genomics, Department of Laboratory Medicine and Pathology | |
Mayo Clinic | |
| 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 |
Leon Jaworski Professor Biomedical Ethics | |
Director, Center for Medical Ethics and Health Policy | |
Baylor College of Medicine | |
| 3:30 p.m. | GAIL JAVITT |
Member, Health Care and Life Sciences Practice | |
Epstein Becker Green | |
| 3:45 p.m. | JORDAN LASER |
Senior Director | |
Cytogenetics and Molecular Pathology of Pathology and Laboratory Medicine | |
Long Island Jewish Medical Center | |
| 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 |
DANIELLE BONADIES | |
SHAWNEEQUA CALLIER | |
SIOBHAN DOLAN | |
ROBERT NUSSBAUM | |
DOROTHY POMERANTZ | |
| Additional Discussant: | |
TIMOTHY STENZEL | |
Director, Office of In Vitro Diagnostics and Radiological Health | |
Office of Product Evaluation and Quality | |
Center for Devices and Radiological Health | |
Food and Drug Administration | |
| 5:00 p.m. | Final Discussion with Workshop Participants |
| 5:20 p.m. | Final Remarks from Workshop Co-Chairs |
GREG FEERO, Workshop Co-Chair | |
Professor, Department of Community and Family Medicine | |
Geisel School of Medicine | |
Faculty, Maine Dartmouth Family Medical Residency Program | |
Associate Editor, Journal of the American Medical Association | |
CATHY WICKLUND, Workshop Co-Chair | |
Director, Graduate Program in Genetic Counseling | |
Past President, National Society of Genetic Counselors | |
Associate Professor, Feinberg School of Medicine, Center for Genetic Medicine | |
Northwestern University | |
| 5:35 p.m. | Adjourn |
| Networking Reception |
