Genetics Education Needs Evaluation (GENE) ProjectThe rapidly evolving field of genetics brings new promise for improving human health in numerous ways. Individuals who know about genetic advances can help themselves and their families. But families from communities with limited access to information and health care are likely to lag behind other health consumers.
The March of Dimes is working to fill this need. The GENE Project, a 5-year cooperative agreement with the
Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA), is investigating the need for consumer genetics education in order to help underserved communities make informed decisions about their health.
MissionThe mission of the project is to develop community-based participatory strategies to improve consumer access to culturally appropriate genetics information, resources and services.
Partner Organizations
Two other partner organizations are working with the March of Dimes and HRSA:
- Family Voices, a national grassroots network of families speaking on behalf of children with special health needs.
- The Genetic Alliance, a coalition of consumers and professionals that promote the interests of children, adults and families living with genetic conditions.
Two Stages
The GENE Project began in 2000 with the collecting of information about consumer genetics education, health literacy and participatory approaches. The second stage, now underway, involves the engagement of two communities in a community-based participatory approach to explore their local genetics education needs and develop a model.
Community Demonstration Projects
The Washington Heights/Inwood (WH/I) GENE Project Coalition is a network of community residents, educational institutions, local businesses, faith-based organizations and health and human service organizations committed to improving the health and social well-being of the entire community, initially concentrating on the Latino population, through community genetics education and by increasing access to high quality, linguistic and culturally-appropriate genetic services.
The objectives of the Coalition are to:
- Engage GENE Project partners and community-based organizations
- to identify community needs, resources and genetic services accessibility through an assessment of needs and assets
- identify genetics training and educational activities for consumers and health and human service providers;
- develop, test and disseminate culturally, linguistically, educationally and gender-appropriate human genetics messages that would assist community members and groups in making inquiries and informed choices about their health.
The Michigan Demonstration of the Genetics Education Needs Evaluation (GENE) Project was established to improve community access to genetic information, building on the work of the Communities of Color and Genetics Policy Project (CCGPP). The MI Demonstration is a partnership between Michigan State University and community-based organizations in Lansing and Flint, MI. Each community-based organization is responsible for participating in the Community Advisory Board (CAB), engaging members of their communities to participate in dialogue to identify the need for genetics education, and assisting in the dissemination of project findings through Town Meetings and other outreach activities.
The goals and objectives of the Michigan project are to:
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Use the model of community-based dialogue to engage African-American communities of diverse socio-economic levels on issues related to genetics education
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Identify barriers that prevent existing genetics information organizations and networks by effectively engaging traditional African American networks in dialogue sessions about genetics
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Recommend strategies to address the barriers preventing existing genetics information organizations and networks from effectively operating in African American communities
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Establish partnerships to increase genetic education resources and services available to the African American communities in Flint/Lansing
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Ensure that African American community based organizations, community participants and MI Demonstration partners are recognized for their contributions to community-based genetics education.
For more information about the GENE Project, e-mail Dr. Diane Ashton at dashton@marchofdimes.com or call (914) 997-4625.
For more details about the GENE Project and its goals, select one of the fact sheets below.
Suggested Links
Project Connect is building a collaborative network that focuses on outreach to diverse, underserved and underrepresented communities (UUCs) around genetics issues. This dynamic network serves as a "meeting-place" in which members can share resources, ask each other questions and learn from one another about how to improve access to culturally- and linguistically-appropriate genetics information, resources and services.
