The Consumer Genetics Education Network (CGEN) Project is a 5-year effort launched in June 2005 to:

Improve genetic literacy in underserved and underrepresented populations
Increase access to culturally and linguistically appropriate genetics education programs and services

The March of Dimes is working with four community groups, who are using community-based, participatory partnership principles, to develop population-specific genetics education materials and models.

Funding is through a cooperative agreement with the Maternal and Child Health Bureau of the Health Resources and Services Administration.

Goal
The overall goal of the CGEN project is to increase the genetic literacy of four collaborating communities in order to:

Facilitate informed health decision making
Increase consultation with family and physicians
Increase use of genetic services among high-risk populations
Promote lifestyle changes that reduce genetic-based health risks

For a one-page summary about the CGEN Project and its goals, click here.

Community Projects
The Dominican Women's Development Center, located in New York City, is developing a basic genetics curriculum to train community health workers (CHWs) to be genetic educators. The CHWs will then be able to conduct community genetics education workshops. All materials will be available in English and Spanish.

The Charles B. Wang Community Health Center, located in New York City, has developed brochures on genetic counseling, thalassemia, amniocentesis, and maternal serum-triple screen in traditional and simplified Chinese. The center is also translating the materials into Korean. The brochures, combined with patient workshops, are intended to improve genetic counseling sessions attended by pregnant women, women contemplating pregnancy, and their families.

The Genetic Science Learning Center (GSLC) at the University of Utah, in conjunction with the Utah Department of Health, has developed genetics curriculum and educational material in collaboration with teachers of high school and elementary school children and their families. The materials for fifth grade are currently available in English and Spanish at GSLC's Web site. The high school materials are being pilot tested.

The National Human Genome Center – GenEthics Unit, Howard University, Washington D.C., has developed two workbooks for use during community educational workshops. The topics are Planning for a Healthy Future: The Importance of Family Health History and Race, Genetics and Your Health: Myths and Realities. These materials are being pilot tested and will be available soon.

Materials will be posted on the community project Web sites as the groups complete the pilot testing and evaluation phase.

For more information about the CGEN Project, e-mail Diane Gross at CGEN@marchofdimes.com or call (914) 997-4612.

Download the CGEN Project Fact Sheet.

November 2008