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Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

Appendix B

Workshop Agenda

Understanding Disparities in Access to Genomic Medicine:
A Workshop

June 27, 2018

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

Director and Head of Computational Biology and Genomics Biogen

Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

8:35 a.m.

Charge to Workshop Speakers and Participants

VENCE BONHAM, Workshop Co-Chair

Senior Advisor to the Director on Genomics and Health Disparities

National Human Genome Research Institute

National Institutes of Health

CATHY WICKLUND, Workshop Co-Chair

Past President, National Society of Genetic Counselors

Director, Graduate Program in Genetic Counseling

Feinberg School of Medicine, Center for Genetic Medicine Northwestern University

8:50 a.m.

Opening Keynote Lecture

OTIS BRAWLEY

Chief Medical and Scientific Officer

American Cancer Society

9:10 a.m.

Clarifying Questions from Workshop Participants

SESSION I: VOICES OF THE COMMUNITY—EXPLORING THE BARRIERS TO ACCESSING GENOMIC/GENETIC SERVICES

Session Objective:

  • To learn about ongoing challenges from those individuals who are having trouble accessing genetic/genomic services.

Session Moderator: Elda Railey, Co-Founder, Research Advocacy Network

9:20 a.m.

CANDACE HENLEY

Executive Director and Founder

The Blue Hat Foundation

9:35 a.m.

SUE FRIEDMAN

Executive Director and Founder

Facing Our Risk of Cancer Empowered (FORCE)

9:50 a.m.

PAT JOLLEY

Director, Clinical Initiatives

Patient Advocate Foundation

Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

10:05 a.m.

JOHN MOESCHLER

Professor of Pediatrics, Geisel School of Medicine Dartmouth College

10:20 a.m.

Panel Discussion with Speakers and Workshop Participants

Discussant:

NATASHA BONHOMME

Chief Strategy Officer

Genetic Alliance

10:50 a.m.

Break

SESSION II: THE ROLE OF HEALTH SYSTEMS IN DELIVERING EQUITABLE ACCESS

Session Objective:
  • Explore the perspectives of health care delivery systems as they relate to delivering fair and equitable access to genetic and genomic services.

Session Moderator: Bruce Quinn, Founder, Bruce Quinn Associates LLC

11:05 a.m.

LARRY MEYER

National Director, Genomic Medicine

Veterans Affairs Medical Center

11:20 a.m.

KATHERINE ANDERSON

Primary Care Specialist

Denver Health

11:35 a.m.

KENT HOSKINS

Associate Professor of Medicine

Director, Familial Breast Cancer Program

University of Illinois at Chicago

11:50 a.m.

Panel Discussion with Speakers and Audience Members

12:20 p.m.

Working Lunch

Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

SESSION III: HOW CAN PROVIDERS MAKE GENOMIC MEDICINE MORE ACCESSIBLE?

Session Objective:
  • Examine providers’ perspectives with regard to the feasibility of ordering genetic tests and providing follow-up care, with a special focus on under-resourced settings.

Session Moderator: S. Malia Fullerton, Associate Professor, University of Washington

1:20 p.m.

SEAN TUNIS

Founder and Chief Executive Officer

Center for Medical Technology Policy

1:35 p.m.

BRIAN AHMEDANI

Director of Psychiatry Research

Research Scientist, Center for Health Policy & Health Services Research

Henry Ford Health System

1:50 p.m.

KATRINA ARMSTRONG

Physician-in-Chief, Department of Medicine

Massachusetts General Hospital

2:05 p.m.

PREETI MALANI

Chief Health Officer, University of Michigan

Professor of Medicine, University of Michigan Medical School

2:20 p.m.

Panel Discussion with Speakers and Workshop Participants

2:50 p.m.

Break

SESSION IV: EXPLORING INNOVATIVE SOLUTIONS AND MODELS OF SUCCESS

Session Objectives:
  • Discuss new approaches that would ensure that genetic/genomic services are available to all, including medically underserved populations.
  • Identify areas where there is a gap in the knowledge and consider research projects that would help answer open questions.
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

Session Moderator: W. Gregory Feero, Faculty, Maine–Dartmouth Family Medicine Residency Program

3:05 p.m.

MARC SCHWARTZ

Professor of Oncology

Co-Director of the Cancer Prevention and Control Program

Research Director, Fisher Center for Hereditary Cancer and Clinical Genomics Research

Georgetown University

3:20 p.m.

RENA PASICK

Professor, Department of Medicine

Director, Office of Community Engagement

University of California, San Francisco, Helen Diller Family Comprehensive Cancer Center

3:35 p.m.

JACQUELYN TAYLOR

Associate Professor and Vernice D. Ferguson Chair in Health Equity

New York University Rory Meyers College of Nursing

3:50 p.m.

TODD SKAAR

Associate Professor of Medicine

Indiana University School of Medicine

4:05 p.m.

Panel Discussion with Speakers and Workshop Participants

SESSION V: IDENTIFYING UNMET NEEDS TO ALLEVIATE HEALTH CARE DISPARITIES IN GENOMIC MEDICINE

Session Objectives:
  • Identify potential solutions to overcoming barriers in access to genomic medicine and actionable next steps that can be taken in the near term (1–3 years) and long term (3–10 years) to reduce health care disparities in this area.
  • Explore gaps in policy, knowledge, and institutional resources that could be addressed to ensure that genomic medicine is equitably distributed across populations.

Session Moderators: Vence Bonham, Senior Advisor to the Director on Genomics and Health Disparities, National Human Genome Research Institute, and Cathy Wicklund, Director, Graduate Program in Genetic Counseling, Northwestern University

Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

4:35 p.m.

Concluding Keynote Lecture

REED TUCKSON

Managing Director

Tuckson Health Connections, LLC

4:50 p.m.

Final Panel Discussion

KATHERINE ANDERSON

OTIS BRAWLEY

SUE FRIEDMAN

JACQUELYN TAYLOR

REED TUCKSON

5:20 p.m.

Final Remarks from Workshop Co-Chairs

VENCE BONHAM, Workshop Co-Chair

Senior Advisor to the Director on Genomics and Health Disparities

National Human Genome Research Institute

National Institutes of Health

CATHY WICKLUND, Workshop Co-Chair

Director, Graduate Program in Genetic Counseling

Past President, National Society of Genetic Counselors

Feinberg School of Medicine, Center for Genetic Medicine

Northwestern University

5:30 p.m.

Adjourn

Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 79
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 80
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 81
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 82
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 83
Suggested Citation:"Appendix B: Workshop Agenda." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 84
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Genomic medicine is defined as the routine use of genomic information about an individual as part of his or her clinical care as well as the health outcomes and policy implications of that clinical use. It is one approach that has the potential to improve the quality of health care by allowing practitioners to tailor prevention, diagnostic, and treatment strategies to individual patients. In recent years, research breakthroughs, technological advances, and the decreasing cost of DNA sequencing have led to the wider adoption of genomic medicine. However, as with the introduction of new technologies into health care, there are concerns that genetic and genomic testing and services will not reach all segments of the population both now and in the near future, and there remains a gap in knowledge regarding potential health care disparities in genomic medicine and precision health approaches.

On June 27, 2018, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to examine the gaps in knowledge related to access to genomic medicine and to discuss health care disparities and possible approaches to overcoming the disparate use of genomic medicine among populations. Workshop participants discussed research on access to genetics and genomics services in medically underserved areas, model programs of care for diverse patient populations, and current challenges and possible best practices for alleviating health care disparities as they relate to genomics-based approaches. This publication summarizes the presentations and discussions from the workshop.

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