Abstract
Information from the Human Genome Project is changing the way primary care providers (PCPs) think about and use genetics information in clinical practice. The Maternal and Child Health Bureau Genetic Services Branch made the education of PCPs a priority in order to improve effective utilization of genetic services. Projects identified needs and developed products to accurately present the changing practice of medical genetics in a way that is useful to physicians and nurses. Surveys, focus groups, and hundreds of interviews during these projects identified significant gaps in knowledge about basic concepts necessary to make appropriate diagnosis and management decisions. PCPs often hesitate to use genetics information because of the belief that having a genetic diagnosis is “bad” and should be avoided at all costs, the perception of limited treatment options, and prejudices complicated by the media hype about inappropriate use of genetic information.
Educational programs for PCPs evolved from simple one-on-one presentations to the creation of comprehensive information resources for use in daily practice. Electronic products developed through these projects include software, Internet sites and a WebManager. The internationally known Internet based GeneTests[TM] and Gene Clinics[TM] present information on Molecular laboratories doing testing and peer reviewed disease specific profiles. Genes in Your Practice© is a CD-ROM information package that presents the basics of Human and Medical Genetics. GenesAtWork© is an Internet site that highlights information for the primary care provider including frequent newsletters on practical genetic issues. INFOGENETICS© includes a CD-ROM WebManager and Internet site that focus the clinician's search for a diagnosis on OMIM© and the Birth Defects Encyclopedia© to generate a genetics differential about a specific patient problem. Genetics professionals and PCP's together with managed care administrators and a strong consumer community must continue to work together to develop tools to make the best possible information available to all electronically.
Article PDF
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Proud, V., Silvev, K., Barash, C. et al. MCHB SPRANS Projects: Collaborative efforts to guide primary care providers to access and use medical genetic information electronically. Genet Med 2, 98 (2000). https://doi.org/10.1097/00125817-200001000-00172
Issue Date:
DOI: https://doi.org/10.1097/00125817-200001000-00172