KANSAS STATE GENETICS PLAN - AN OVERVIEW

1. 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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. Questions Our Vision - Healthy Kansans living in safe and sustainable environments

13. Contact Information Linda A. Williams Suite 220 1000 SW Jackson Topeka, KS 66612 785-296-3617 lwilliams@kdheks.gov Our Vision - Healthy Kansans living in safe and sustainable environments