In October 2007, a CDC-sponsored EGAPP Stakeholders Group (ESG) was established. The ESG includes representation from individuals and organizations interested in the development, evaluation, and integration into clinical practice of genetic tests and other applications of genomic technologies. ESG was established, with the support of the EGAPP Steering Committee to formally engage stakeholders in EGAPP processes and products.

Genetic testing has many important stakeholders. EGAPP has chosen to focus on four stakeholder groups for purposes of developing and evaluating EGAPP processes and products. These stakeholders are health care providers, health care payers and purchasers, policymakers, and targeted consumers. However, the ESG will include broader representation by additional stakeholder categories.

ESG membership

ESG is composed of a broad range of stakeholders with the expertise, experience, and ability to represent the perspectives of their stakeholder categories. Thirty-five ESG members were selected in fall 2007 by a six-person ESG Steering Committee. The members were chosen from a pool of qualified nominees submitted by organizations and individuals; interested individuals could also nominate themselves. In addition to standing representatives, ESG plans to include ad hoc representatives with an interest and expertise in specific topics under review by the EGAPP Working Group. ESG meetings are open to the public.

ESG roles

ESG activities under consideration include:

• Guiding EGAPP in engaging effectively with organizations, anticipating issues that may arise, and disseminating information to stakeholder groups.

• Assisting EGAPP in identifying the central points from evidence reports and Working Group recommendation statements that can be used to create clear informational messages for targeted stakeholder groups.

• Helping frame and deliver the key messages in ways that are useful for targeted stakeholder groups.

• Providing advice and assistance on stakeholder surveys used to obtain feedback on EGAPP processes and products.

• Offering input on contextual issues that may be important for the EGAPP Working Group to consider in evidence reviews and recommendation statements. Contextual issues may include test costs, access to testing, and family considerations.