US Department of Health and Human Services

Personalized Health Care Initiative Workshop:

“Understanding the Needs of Consumers in the Use of Genome-based Health Information Services”

Time    July 7, 2008, 12 – 5:30 PM

Questions To submit questions to the panel please send an email to

Location    Ronald Reagan International Trade Center

Format    Panel discussion and audience questions



Recorded Video - Keynotes  (Real Video)

Recorded Video - Panel 1 (Real Video)

Recorded Video - Panel 2 (Real Video)

Recorded Video - Panel 3 (Real Video)

Caption Text (HTML)
NOTE: The caption text is a record of the close captioning offered to support the video. It is not a totally accurate, verbatim transcript of the meeting. It is offered here for interest and support of the video.

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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


1:05 – 1:30 pm            Consumer interest in health and genomic information (survey results)

Steve Bodhaine, MBA

Group President, Research/Product Development



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


23andMe, Inc.

Esther Dyson

EDventure Holdings

Rebecca Fisher, MLIS

Patient Advocate

Matthew Holt

Co-founder Health 2.0 Conference


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

Kari Stefansson, MD, Dr. Med
President, CEO, and Director

deCODE genetics

Reed Tuckson, MD, FACP

Executive Vice President and Chief of Medical Affairs

UnitedHealth Group


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


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


5:15 – 5:30 pm            Looking to the future of consumer services (moderated discussion)

            Michael Cowan, MD

Chief Medical Officer


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