The March of Dimes Birth Defects Foundation organized two meetings of the Genetics Awareness Coalition. It was established in August 1998 to explore potential collaboration among federal agencies and professional groups and to discuss the structure of a campaign to increase public awareness of advances in genetics and their impact on health and health care.

Federal coalition members included the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Health Care Financing Administration (HCFA) and the Health Resources and Services Administration (HRSA). Other institutional members included the American Medical Association (AMA) and the American Cancer Society. See the Appendix for a complete list.

Key Results

Two coalition meetings were held on December 6–7, 1998, and June 6, 1999, both in Arlington, Va. They drew 25 and 26 attendees, respectively.

December Meeting

During the December 1998 meeting, the coalition drafted as a statement of purpose: "Increase [audience] [knowledge] of existing and emerging genetic information and its applications to enable or to empower individuals, families, and communities to participate in decision making regarding genetic health care issues."

The coalition also identified potential target audiences, including: legislators and policymakers, news media, community leaders, community organizations, and men and women of reproductive age.

June Meeting

During the June 1999 meeting, the coalition reviewed and made plans to finalize a letter of intent (drafted by two coalition members) outlining a plan for a national genetics public awareness campaign to expand public awareness and to help maximize the benefits and minimize the risks of the genetic revolution.

Funding

The Robert Wood Johnson Foundation (RWJF) provided $14,680 in partial funding to hold the meetings. The Genetics Services Branch of the Maternal and Child Health Bureau of HRSA and the March of Dimes also provided some funding for the meetings.

After the Grant

The coalition submitted the letter of intent with a preliminary request for funding to RWJF, but subsequent conversations between the coalition and RWJF did not lead to a formal proposal. Instead, HRSA provided $3.5 million to the March of Dimes under a cooperative agreement in which the agency and the March of Dimes will establish and maintain a consumer network for genetics resources and services information. This five-year project began in June 2000. The Genetics Awareness Coalition no longer exists, but many of its former members are expected to participate in the HRSA-funded project.