HUMAN GENOME EDUCATION MODEL (HUGEM) PROJECT II

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DESCRIPTION: (Applicant's abstract) The field of medical genetics continues to witness dramatic advances (largely resulting from the Human Genome Project) which have led to an increased demand for genetic services and brought genetics issues to the forefront of health care. While physicians and nurses provide primary medical care for persons with genetic conditions, the allied health professionals (such as nutritionists, occupational therapists, physical therapists, psychologists, social workers, and speech-language pathologists) are often the first to: 1) suspect that their clients have a genetic disorder; 2) give a label to the developmental or behavioral symptoms; 3) recommend further evaluations including genetic testing 4) interpret and discuss results of testing and sometimes give diagnoses; 5) influence attitudes and decisions of their clients about participating in genetic testing or research; 6) provide referrals to other resources such as genetic counseling and genetic support groups; 7) provide counseling related to coping with and adjusting to a genetic condition; and, 9) educate the public about genetic conditions and ELSI issues. Allied health professionals, in general, remain inadequately informed in the area of human genetics and issues related to genetic knowledge, genetic testing, and genetic research. Building on the experiences and products of the Human Genome Education Model Project (1993-1997), Georgetown University Child Development Center-University Affiliated Program (UAP) (Dept. of Pediatrics) and the Alliance of Genetic Support Groups plan to use the collaborative (consumer and health professional) education model to educate allied health professionals through their respective national organizations (American Dietetic Association, American Occupational Therapy Association, American Physical Therapy Association, American Speech-- Language-Hearing Association, American Psychological Association, Council on Social Work Education, and National Association of Social Workers). The overall goal is to derive optimal benefit from development of the Human Genome Project for allied health professionals and the consumers they serve. The specific aims are: 1. to conduct surveys to assess needs, determine education priorities, and identify resources of the respective organizations; 2. to use information from the surveys to adapt the collaborative education model to educate and sensitize health professionals about genetics, the HGP and its ELSI issues and to implement education for national staff, practitioners, and educators; and 3) to evaluate each level of education and disseminate information about the project. HuGEM II is designed to be carried out over a three-year period. An advisory committee will provide expertise in medical genetics, ethics, law, consumer issues, social policy, and health education.