In the Saguenay-Lac St. Jean (SLSJ) region of Quebec, the high prevalence of some hereditary diseases has led concerned community members to create the Corporation for Research and Action on Hereditary Diseases (CORAMH) to take an active part in seeking and providing answers to this important health issue. CORAMH performs an important and unique role in the reciprocal transfer of information between community and researchers, as well as in the promotion and development of specialized services and research. It also provides a meeting ground for dialogue and dissemination of information. In particular, since 1983, CORAMH has been offering a Hereditary Disease Information and Prevention Program, mainly to SLSJ high-school clientele to convey basic genetic notions and provide information on specific hereditary diseases and on genetic determinants of health. By rallying various actors around a common table, CORAMH has come to be viewed as a community representative and can thus conduct effective mediations with decisional authorities for the development of proper health services. CORAMH also participates in reflection and research projects, such as ECOGENE-21, that aim to develop exportable infrastructures in preventive and community genetics and vanguard scientific, medical, ethical and social approaches capable of improving the population’s quality of life. CORAMH offers an intervention model that can be applied to specific hereditary disorders or complex diseases and serve other communities which will be requiring interventions on the genetic determinants of health in the upcoming decades.

Keywords:
Community genetics, Education, Information
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© 2001 S. Karger AG, Basel
2001
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