Sharon Davis, Ph.D., Director
Department of Research and Program Services, The Arc of the United States, 500 East Border St., Suite 300, Arlington, TX 76010
The Arc of the United States, a national organization on mental retardation, with 140,000 members and more than 1000 affiliated chapters proposes to educate its general membership and volunteer leaders about the Human Genome Project as it relates to mental retardation. A large number of identified causes of mental retardation are genetic, and many family members of The Arc deal with issues related to a genetic condition on a daily basis. We believe it is critical for our members and leaders to be educated about the scientific and ethical, legal and social aspects of the HGP, so that the association can evaluate and discuss the issues and develop positions based on adequate knowledge.
The major objectives of the proposed three-year project are to develop and disseminate educational materials for members/leaders of The Arc to inform them about the Human Genome Project and mental retardation and to conduct training on the scientific and ethical, legal and social aspects of the Human Genome Project and mental retardation using The Arc's existing training vehicles.
The Arc will develop and disseminate educational materials oriented toward families and conduct training at its national and state conventions, local chapter meetings and at board of director's meetings. The American Association of University Affiliated Programs for Persons with Developmental Disabilities (AAUAP) will assist with the project by providing needed expertise. The AAUAP membership includes university faculty who are experts on the genetic causes of mental retardation and on related ethical, legal and social issues. An advisory panel of university scientists and leaders of The Arc will guide the project.
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