Genomics Translation

Second Meeting of the EGAPP Stakeholders Group Held in Seattle

Agenda

“With the upcoming publication of several EGAPP recommendation statements, the timing of this ESG meeting was critical to the success of the EGAPP initiative, and our center was happy to sponsor and host the meeting,” said Karen Edwards, PhD, director of the Center for Genomics and Public Health at the University of Washington. “Our center and the Center for Public Health and Community Genomics at the University of Michigan have been actively involved in the EGAPP initiative. It is very satisfying to see the progress that is being made.”

 

 

On July 30-31, 2008, the Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Stakeholders Group (ESG) held its second meeting at the Talaris Conference Center in Seattle, Washington. The meeting was sponsored and hosted by the Center for Genomics and Public Health at the University of Washington. The meeting goals were to: 1) further clarify how the ESG and the EGAPP Working Group would interact; 2) to define the work of the ESG subcommittees for Topics, Communication, and Information Technology; and 3) to outline how the ESG could increase awareness of EGAPP and facilitate dissemination of EGAPP reports and recommendations. More than 30 participants attended the meeting, including 24 of the 35 ESG members; representatives of CDC’s Office of Public Health Genomics (OPHG); and EGAPP team members and consultants.

The ESG is sponsored by OPHG and was established by a core group of stakeholders in October 2007. The ESG represents individuals and organizations interested in the development, evaluation, and integration of genetic tests and other applications of genomic technologies into clinical and public health practice. The 35 ESG members include policy makers, educators, researchers, communicators, science writers, information technology developers, consumer advocacy groups, funding agencies, and in vitro diagnostic and biotech industry. The ESG is establishing a coordinated approach for increasing awareness of EGAPP and for translating and disseminating EGAPP recommendations for use in clinical and public health practice.

Drs. Debra Leonard and Marc Williams co-chaired the two-day meeting. “This highly diverse group of very connected stakeholders is engaged and enthusiastic about partnering with the EGAPP Working Group to develop and disseminate the growing number of very significant evidence reports on the appropriate use of genetic tests,” said Dr. Leonard. The first day of the meeting included presentations on the current processes for genetic test development and oversight and the EGAPP Working Group methods for selecting genetic tests and framing evidence reports. The meeting participants discussed these topics and developed a proposed model that defines points of interaction between ESG and the EGAPP Working Group.The ESG subcommittees for Topics, Communication, and Information Technology also met separately to discuss and finalize their work plans for 2009.

On the second day, Kathy Hudson, PhD, and Joe McInerney, MS, co-chairs of the ESG Communication Subcommittee, facilitated a participant discussion on the strengths of EGAPP and what the ESG members could do to increase the visibility of this initiative. The participants made a list of activities they would do to help demonstrate the value of EGAPP among their constituents. For example, Ed Black of Blue Cross Blue Shield Association stated that health insurers need “comprehensive, systematic reviews,” and he offered to generate awareness of EGAPP at the Association's Distinctively Blue meeting this fall. Sharon Terry, director of the Genetic Alliance, pledged to write an editorial for Genetic Testing, the journal of the Genetic Alliance, and to organize a workshop about EGAPP at the 2009 annual conference.

The next ESG meeting will be held January 22-23, 2009, in Atlanta, Georgia.