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Eyes on the Prize:
Truth Telling about Genetic Testing

September 20, 2007 – September 21, 2007
Washington, DC

There are many wonderful examples of systems in our world radically re-tooling themselves to be superbly functional and effective. The interstate highway system, requiring the coordination of many states, was originally planned to provide key ground transport of military supplies and troop deployments, and it has become a key element in American life, for pleasure and work.

The Federal Aviation Administration was born of a unique combination of government and industry partners determining the best course for regulation and innovation. They even threw in a few environmentalists to help determine impact!

At the Genetic Alliance conference this summer, Newt Gingrich spoke of the need for us to be both patient and visionary – on the brink of numerous new worlds. The pace of science has quickened to such a degree that as we envision the future today, we are akin to Isaac Newton trying to invent the iPhone – that was the challenge and the inspiration for the Summit.

Genetic testing is a major focus for many in the research, laboratory, clinical, regulatory, and policy communities. In the 21st century, genetic testing requires that we speak and seek the truth – about the systems that surround it, impede it and support it.Ultimately, diagnostics must be the vanguard of the integration of genetics and genomics into medicine, for the benefit of patients and communities. This meeting, as indicated by its title, focused on the genetic testing landscape as it relates to the ultimate outcome – excellent diagnosis to serve the men, women, and children who so desperately need appropriate tests and treatments.

Stakeholders addressed difficult questions in order to capitalize on the tremendous asset of genetic testing in its many applications. The resources, materials, and discussion were distilled into recommendations for genetic testing - from development through to services.

Presenters and attendees were prepared in beforehand through a variety of means including surveys, webinars, and targeted readings, in order to advance the discussion rather than reiterate an old dialogue. The attendees were more than an audience: they were the participants in the dialogue, and they asked questions and challenged presenters. Together, all participants engaged in honest, sophisticated discussion and emerged with points of action that will transform the system and achieve health.

Joanne Armstrong – Senior Medical Director, Aetna
Sherri Bale – President & Clinical Director, GeneDx
Lynn Boyd – Director, Public Health and Scientific Affairs, College of American Pathologists
Linda Bradley – Geneticist, Office of Genomics and Disease Prevention, CDC
Kevin Conroy – President & CEO, Third Wave Technologies
Greg Feero – Senior Advisor, Genomic Medicine, National Human Genome Research Institute,
NIH
David Feigal – Senior VP, Global Regulatory Affairs and Global Safety Surveillance, Elan Pharmaceuticals; former Director, CDRH, FDA
Patricia Furlong – Founding President & CEO, Parent Project Muscular Dystrophy
Jeff Gibbs – Director, Hyman, Phelps & McNamara, P.C.
James C. Greenwood – President & CEO, Biotechnology Industry Organization
Elliott Hillback – Senior VP, Genzyme
Stuart Hogarth – Research Associate, University of Cambridge
Kathy Hudson – Director, Genetics and Public Policy Center
Katherine Johansen – Scientist, Genetics and Molecular Medicine,
American Medical Association
Michele Lloyd Puryear – Chief, Genetic Services Branch, MCHB, HRSA
Alan Mertz – President, American Clinical Laboratory Association
Robert Nussbaum – Chief, Medical Genetics, UCSF School of Medicine
Paul Radensky – Partner, McDermott Will & Emery
Michelle Schoonmaker – Director of Government Affairs, Cepheid
Randy Scott – Chairman & CEO, Genomic Health, Inc
Scott Serota – President & CEO, Blue Cross and Blue Shield Association (invited)
Stephen J. Ubl – President & CEO, AdvaMed (invited)