Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Agenda

07/07/2008

12:30 – 12:45 pm        

Welcome, Meeting Objectives and Overview
Richard Campanelli, JD
Counselor to the Secretary for Science and Public Health,
US Department of Health and Human Services

12:45 – 1:05 pm

Medical decision-making empowered by genomic information
Eric Topol, MD
Director, Scripps Translational Science Institute
Dean, Scripps School of Medicine

  • How can validated genomic information empower consumers in medical decision-making?
  • Compare and contrast what is currently available in the marketplace.
  • What is your vision for the future genomic services?

1:05 – 1:30 pm

Consumer interest in health and genomic information
Steve Bodhaine, MBA
Group President, Research/Product Development, Yankelovich

1:30 – 2:30 pm

Panel 1: What is the consumer interest in genome-based health information?

1:30 – 2:10 pm            

Panel Discussion

2:10 – 2:30 pm

Q&A
Linda Avey
Co-founder, 23andMe, Inc.
Esther Dyson
EDventure Holdings
Rebecca Fisher, MLIS
Patient Advocate
Matthew Holt
Co-founder Health 2.0 Conference

  • What drives the consumer’s interest in health information for predicting health outcomes?
  • What are key factors for motivating interest in genetic testing?
  • For what information are consumers ready?

2:30 – 2:45 pm

Break

2:45 – 4:00 pm

Panel 2: Is the testing process reliable, and is the information’s privacy maintained?

2:45 – 3:25 pm

Panel Discussion

3:25 – 4:00 pm

Q&A
Deven McGraw, JD, MPH
Director, Health Privacy Project, Center for Democracy and Technology
Ryan Phelan
Founder and CEO, DNA Direct
Jeffrey Gulcher, MD, PhD
Chief Scientific Officer, deCODE genetics

Reed Tuckson, MD, FACP
Executive Vice President and Chief of Medical Affairs, UnitedHealth Group

  • What are potential ways to inform consumers that quality control standards for testing are being met?
  • How are risk assessments determined?
  • Will (should) the genomic data be utilized for public health benefit or other population-based research in the future?
  • Are there cautions that the consumer should consider when sharing their genomic information with others, such as family members, members of social network, or clinicians?
  • What protections are currently or should be employed to protect the security and privacy of consumer genomic information?

4:00 – 5:15 pm

Panel 3: what is currently useful to consumers, and what can they expect in the future?

4:00 – 4:50 pm

Panel Discussion

4:50 – 5:15 pm

Q&A
Mari Baker
President and CEO, Navigenics
Katherine Johansen, PhD 
Senior Scientist, American Medical Association Program in Genetics and Molecular Medicine
Nancy Johnson
Senior Public Policy Advisor, Baker Donelson
Ronni Sandroff, MA
Director/Editor, Health and Family Information, Consumer Reports
Angela Trepanier MS, CGC
President, National Society of Genetic Counselors
Assistant Professor, Clinical Center for Molecular Medicine and Genetics, Wayne State University

  • How can genomic information and explanatory resources deepen health literacy and support consumer empowerment for prevention?
  • What checklist of resources or information should consumers have to assign value to genome-based health information services?
  • How valuable is the information currently available relative to other health information, such as family history, blood pressure, BMI etc.?
  • What can/should consumers expect in the future?

5:15 – 5:30 pm

Looking to the future of consumer services (moderated discussion)

Michael Cowan, MD
Chief Medical Officer, BearingPoint

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