Lately there's been an unfortunate plentitude of opportunity for e-patient, consumer health advocates to become involved in the debate surrounding who 'owns' our genetic information and how we may legally obtain access to it (or not).
The US government is trying to keep up.
Our DHHS Secretary named "The Personalized Health Care Initiative" one of 10 priority areas for the department - with the goal of "engaging in helping to create a health care system that is consumer-centric, preventative, and personalized."
Next week, Matthew Holt of The Health Care Blog and co-founder of the Health 2.0 Conferences will be speaking at a US Dept. of Health and Human Services workshop tackling these issues.
I'm attending at Matthew's invitation, and thanks to Berci Mesko's organization of the 23andme seminar in Second Life, I'm well prepared. It's an open meeting, and the consumer perspective is highlighted. As Matthew says, it's a 'star-studded' event - check out rosters for the Q&A panels (speaker bios here).
If you're in DC, VA, or MD, PLEASE mark your calendars and participate if at all possible. Register online here.
The conference will also be available via webcast - register for that here.
In the interests of full disclosure and transparency (and so you can't use the click-through requirement as an excuse for not attending), I'm also posting full details of the meeting below:
The workshop will explore the information needs of consumers in utilizing consumer-directed genetic testing services and will be held on Monday, July 7, in Washington , D.C. The attached document contains a brief meeting description and the agenda. Registration is available at http://events.SignUp4.com/ASPE.
The Personalized Health Care Initiative at the US Department of Health and Human Services is one of the Secretary’s ten priority areas and has been engaged in helping to create a health care system that is consumer-centric, preventative, and personalized. An upcoming development for this personalized system is an increased understanding of the genetic basis of disease. Recently, services have emerged that provide genome-based health information directly to consumers. These new services have occasioned considerable press and public attention. At the same time, questions have been raised quickly regarding the real value of these services to consumers.
The Personalized Health Care Initiative has conceptualized a workshop to explore the information needs of consumers in utilizing consumer-directed genetic testing services. The workshop will be held on July 7 at the Reagan International Trade Center in Washington, DC (and via the web) and is aimed at the public benefit where stakeholders can bring differing perspectives and look toward actions that will help consumers make informed use of genome-based health information services. It is important to emphasize that the consumer perspective is the theme.AGENDA
- 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, 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
- 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, 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
- 5:15 – 5:30 pm: Looking to the future of consumer services (moderated discussion), Michael Cowan, MD, Chief Medical Officer, BearingPoint 3