Genetics

Western States Genetic Services Collaborative

Oregon is participating in the Western States Genetic Services Collaborative.   The Collaborative is funded by the federal Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), and is funded through May, 2007.

One of the goals for the Oregon part of the project is to figure out how to make it easier for families living outside of Portland to see genetics specialists. Right now, all Oregon genetics physicians and metabolic dieticians are located in Portland. One the things we will try is "telemedicine." Families will go to a local hospital or clinic and use a special television system to be seen by genetics professionals located in Portland. We are currently making the arrangements to try out telemedicine for Oregon genetics visits.

Here is an updated version of the abstract of the project we submitted with our application for funding.  For more information about the Oregon part of the Western States Genetic Services Collaborative, please contact Cori Feist, MS, CGC, , 503-418-1722.

Abstract-Western States Genetic Services Collaborative

Project Directors: Sylvia Au, MS, CGC & Kerry Silvey, MA, CGC

Oregon Project Coordinator and Genetic Counselor: Cori Feist, MS, CGC

Project Period: September 30, 2004 to September 30, 2007

Problem to be addresses:

The most significant barriers to high quality and accessible genetic services in Alaska, Guam, Hawaii, Idaho, Nevada, Oregon, and Washington are the unique geography, population distribution, and lack of physician genetic specialists outside large metropolitan areas.  The population distribution of each state includes one large metropolitan area, with the remainder of the population being in smaller urban, rural, and remote areas.  Thus, one encounters the problems of planning and delivering services to both high and very low-density populations.  Alaska, Idaho, Nevada, eastern Oregon, and eastern Washington depend heavily on the cooperation of genetic services providers, policy planners, and genetics laboratories in Portland and Seattle; Hawaii depends on the cooperation of genetic services providers in California and laboratories in Portland, raising problems of interstate licensing, liability, reimbursement, and travel.

Improving Access:

One goal of this project is to plan, pilot, and evaluate a regional practice model that improves access to specialty genetic services, comprehensive primary care, and care coordination for Hawaii , Idaho, and Oregon children with heritable conditions.  Services for Alaska and Nevada children may be added in subsequent years.  Our objectives include improving access to specialty metabolic genetic services for children with suspected or confirmed metabolic conditions, improving access to clinical genetic specialty services for children with suspected or confirmed genetic conditions and congenital malformations. improving access to comprehensive primary care for children with heritable conditions, and improving access to public health nurse care coordination services for children with heritable conditions.

Increasing Capacity:

Another goal is to increase the capacity of Alaska, California, Hawaii , Idaho, Nevada, Oregon, Washington, and Guam genetics and newborn screening programs to perform their assessment, policy development, and assurance functions.  Objectives include developing strategies to monitor heath outcomes for children with heritable conditions, promote third party reimbursement of in-person, telephone, and telemedicine genetic services, assisting the State of Alaska to assess medical management and care coordination needs for children diagnosed with heritable conditions, assisting Guam to develop a public health genetics plan, facilitate collaboration between genetic services providers, families, primary care providers, state genetic programs, newborn screening programs, and others to identify and implement strategies that increase the availability of pediatric subspecialty care for children with heritable conditions living outside urban areas.