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Delivering Genetic Services

Purpose

The overall purpose of this project is to assess the model through which genetic services are delivered, to explore alternative models of service delivery, and to identify changes in public policies that would promote appropriate and cost effective access to a broad range of genetic services to all who might benefit from them. Our assessment will include evaluating the economic, legal, cultural and policy aspects of the existing system and alternatives. In addition, both specific genetic service markets such as screening and testing, as well as markets for complementary services such as genetic counseling and education will be examined. Throughout, the analyses will consider the organization and financing mechanisms of the health services system within which genetic services are delivered.

Challenges

The impetus for this project is rapid projected growth in the clinical availability of genetic technologies that can identify persons at increased risk for acute and chronic diseases. The pace of public policy development to guide appropriate adoption and use of these technologies, however, is poorly matched with the pace of their discovery. Furthermore, the emergence of these discoveries serves to add to the existing burden on health care professionals providing genetic services who increasingly find it difficult to be reimbursed for their services and are experiencing increased demand for their expertise. The issues to be addressed by the project are multifaceted: how and how well does the current genetic service delivery model work; are there alternative models that would work better; and if so, what public policy changes do we need to get us from here to there?

Goals and Objectives

The three specific goals for the Delivering Genetic Services project are to

  • Characterize and evaluate the current model for genetic services delivery, focusing on the economic, legal, cultural, and policy aspects
  • Characterize and evaluate potential alternative models for delivery of genetic services
  • Identify and assess options for public policies that promote cost effective, accessible, and equitable delivery of genetic services

Methodology

Our approach to achieving these goals is multidimensional. We will combine an exhaustive review of what is already known about current service delivery models from the scientific, economic, legal, policy, and health services literature, with structured interviews with a variety of key informants, as well as formal legal, cost-effectiveness, and policy analyses and case studies of a number of specific genetic services. Our work will be guided by the involvement of our HRSA partners and informed by an advisory committee representing key stakeholder groups from the public and private sector.

Evaluation

Project staff monitor all activities to ensure they proceed as planned and on time and that all materials developed are widely disseminated.

Partnerships

The Washington State Department of Health partners with the University of Washington's Resource Center for Health Policy and Institute for Public Health Genetics to conduct this project. Project staff are nationally known for their expertise in multiple areas including delivering genetic services, conducting cost effectiveness analyses, legal and policy analyses, socio-cultural analyses, developing policy options, facilitating dialogs, working with advisory committees, and communicating information in understandable formats.

RCHPol HSERV SPH UW WA DOH HRSA
Genetic Services Policy Project
1107 NE 45th St., Suite 400
Seattle, WA 98105
UW Box: 354809
Phone:   206-685-2371       Fax:   206-543-9345
genpol@u.washington.edu

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This website is supported in part by Projects # U35MC02601 and # U35MC02602 from the Maternal and Child Health Bureau (Title V, Social Security Act), #11223, Health Resources and Services Administration, Department of Health and Human Services
Conrad, MS