KANSAS STATE GENETICS PLAN - AN OVERVIEW Presented by Linda Williams MT(ASCP) Newborn Screening Follow-up Coordinator Kansas Department of Health and Environment Our Vision - Healthy Kansans living in safe and sustainable environments

History of Plan Funded through a grant from the Heartland Regional Genetics Center Initial project began in 2009 DNAXPRT Consulting, LLC created original draft EnVisage Consulting, Inc. convened state experts to complete plan Our Vision - Healthy Kansans living in safe and sustainable environments

Plan Contents Background on public health in KS KS demographic overview Genetic contribution to chronic diseases and health in KS Current genetics services and resources in KS 2007 State Genetics Survey results Challenges Goals and objectives Implementation plan Our Vision - Healthy Kansans living in safe and sustainable environments

Goals and Objectives Stakeholders identified four core goals at the center of the plan At least four objectives per goal were defined Each objective further defined with strategy statements Our Vision - Healthy Kansans living in safe and sustainable environments

Goal 1: Improve the state’s capacity to respond to advances in genomic medicine and technology. Objectives: Ensure an adequate workforce by promoting awareness of careers in genetics for interested individuals. Promote the integration of public health genomics within KDHE and other relevant state and local agencies. Identify funding opportunities to increase state and local public health capacity to respond to current and emerging technical and administrative needs relative to a comprehensive statewide genetics and newborn screening program. Our Vision - Healthy Kansans living in safe and sustainable environments

Goal 1: Improve the state’s capacity to respond to advances in genomic medicine and technology. Objectives (continued): Promote / enhance / improve availability of comprehensive genetics clinics throughout Kansas. Promote / enhance / improve availability of DNA testing for children with heritable disorders and their relatives. Promote / enhance / improve quality of genetic laboratory testing in Kansas. Our Vision - Healthy Kansans living in safe and sustainable environments

Goal 2: Promote collaborative partnerships in support of genetic services in Kansas. Objectives: Promote collaborative partnerships between hospitals, educational institutions and health care professionals to support genetic services and education. Increase utilization of tele-genetics for clinical and educational purposes. Identify and pursue use of telemedicine as a tool for improving accessibility and dissemination of information and resources. Promote / enhance / improve / standardize quality and availability of clinical reproductive genetics services statewide and disseminate consensus guidelines for reproductive genetic healthcare. Our Vision - Healthy Kansans living in safe and sustainable environments

Goal 3: Develop a genetics literacy agenda for the public and policymakers. Objectives: Expand provider knowledge regarding the impact of genetics on health. Develop avenues for communication about gene-environment issues between academia, public health, primary care professionals and the public. Create a State Genetics webpage. Expand public knowledge regarding the impact of genetics on health. Facilitate trainings for service coordinators of children with special health care needs, consumers, and genetic health care providers to improve collaboration between agencies and families. Our Vision - Healthy Kansans living in safe and sustainable environments

Goal 4: Assess the impact of heritable conditions on public health and sustain a statewide partnership of genetic services. Objectives: Improve financing of genetic health care and support services. Improve the utilization of existing data sources for planning, implementing, and evaluating program activities. Develop a statewide surveillance system for genetics. Develop and maintain systems to improve the accuracy and completeness of newborn screening data. Our Vision - Healthy Kansans living in safe and sustainable environments

Goal 4: Assess the impact of heritable conditions on public health and sustain a statewide partnership of genetic services. Objectives (continued): Improve the assessment and understanding of birth defects as a public health problem. Develop methods to assess the public health burden of genetic/familial disease in the adult population. Conduct annual reviews of all genetic service components. Create mechanisms to routinely assess evolving genetic issues. Our Vision - Healthy Kansans living in safe and sustainable environments

Implementation Plan Detailed implementation plan included in State Genetics Plan (pages 25-27) Appendix B – Goal Action Plans ◦ Prioritized objectives ◦ Recommended actions ◦ First steps ◦ Resources ◦ Responsible person or organization ◦ Timeline Our Vision - Healthy Kansans living in safe and sustainable environments

Questions

Contact Information Linda A. Williams Suite SW Jackson Topeka, KS Our Vision - Healthy Kansans living in safe and sustainable environments