The Human Genome Program (HGP), now underway to map and sequence the human genome, introduces one of the most significant developments in health care in the decade. The rapid advances in identifying and, in some cases, preventing and curing genetic disease have profound implications for persons with genetic disorders and for the multi- disciplinary health professionals who provide services to them. The overall goal of the Human Genome Educational Model (HGEM) Project is to derive optimal benefit from development of the Human Genome Program for individual and family members (including those from underserved populations) of 90 voluntary genetic support groups and for multi- disciplinary professionals in 25 University Affiliated Programs who provide diagnostic and health services for a broad network of individuals with genetic and nongenetic related disabilities and chronic illnesses.
The Aims are: (1) To assess the knowledge, attitudes, experience and practice of a sample of 300 consumers and 300 nongenetic health professionals with regard to the HGP and its ethical, legal and social implications; (2) To use the survey findings to develop a HGEM for consumers and health professionals who provide diagnostic and intervention services for consumers/ potential consumers of genetic services and their families; (3) To use the HGEM (a) to educate 80 consumers and 80 multidisciplinary health professional leaders in two regions of the United States; and (b) to motivate, train and provide resources for the leaders to educate another 600 consumers in 40 local, regional and national genetic support groups and genetic networks as well as 312 professionals in 25 of the UAPs; and (4) To evaluate the effectiveness of the educational activities. A National Advisory Committee will provide continuing input into the planning process of each phase. A vital aspect of implementation is the formation of Regional Coordinating Committees in the two regions to include consumers, genetic professionals, and other health professionals. The HGEM Project is proposed for three years. The HGEM Project is a joint effort of Georgetown University Child Development Center - University Affiliated Program and the Alliance of Genetic Support Groups.
| Lapham, E V; Kozma, C; Weiss, J O (1996) Genetic discrimination: perspectives of consumers. Science 274:621-4 |
