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PUBLIC HEALTH RELEVANCE: The proposed project will develop a cadre of disease-specific genetic counselors, and will evaluate their impact on pediatric and adult genetic services.
Special focus will be given to ensuring the successful recruitment of underrepresented minorities. This arrangement will ensure not only diversity in the program, but will also preserve the continuity of a multi-disciplinary effort. A representative of the genetic counselors and trainees involved will serve as co-director of the proposal. Efforts will be made to recruit an additional cohort of genetics fellows to participate in the project.
An evaluation plan will assess trainees both before and after training. After the first year, trainees will have a supervised counseling experience working with patients with the selected chronic disease. Training will be provided for all trainees in the first year, and for the genetic specialists, it will include both a patient-based component and a didactic curriculum. While genetic counseling is a component of the education of all medical geneticists, this project will specifically focus on pediatric genetic counseling, given the specialized needs of patients with sickle cell anemia, cystic fibrosis, and Tay-Sachs disease. The effort will be in two phases: in the first phase, we will develop a disease-specific curriculum for existing pediatric genetic trainees in the second phase, we will recruit and train genetics fellows (MD, DO, or NP/PHD) in the medical genetic specialties. This program will enhance and coordinate the clinical activities of a group of well-established pediatric geneticists and genetic counselors, and to increase the number of well-trained genetic counselors in the Pacific Northwest.
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