Karen Greendale, MA, CGC, McKing Consulting, Contractor for the Office of Public Health Genomics, Centers for Disease Control and Prevention
In recent years, public health programs in several states have used innovative approaches to implement evidence-based genomic testing recommendations in an effort to improve health outcomes for people at increased hereditary risk for breast, ovarian, colorectal and other cancers. For example, the Michigan Department of Community Health [PDF 1.04 MB] has partnered with payers in their state to extend coverage consistent with the U.S. Preventive Services Task Force 2005 BRCA recommendation to over 6 million Michigan residents. Connecticut is one of several states where the state health department has used cancer registry data to identify thousands of state residents who might benefit from genetics services for hereditary breast, ovarian, colorectal and other cancers based on evidence-based recommendations.
The CDC Office of Public Health Genomics (OPHG) has categorized genomics applications into a three tier system to help clinical and public health providers assess evidence-based readiness of specific interventions for general use in practice. Three applications relating to hereditary breast and ovarian cancer (HBOC), Lynch syndrome and familial hypercholesterolemia have reached tier 1 status and are recommended for clinical use by evidence-based panels based on a systematic review of analytic and clinical validity and clinical utility.
To help those working in local, state or regional public health sectors who are interested in developing or expanding programs relating to one or more of these applications, we have worked with stakeholders around the country to produce a “clickable map”. The map is meant to provide a “one-stop shop” for finding information about programs and potential partners that may be relevant to implementation. Under each state (and the District of Columbia) can be found contact information for the State Genetics Coordinator. Links are provided to webpages about the Genetics/Genomics and Newborn Screening Programs. Access to pertinent statutes is provided in this section. The rest of the information is specific to each of the three applications.
For each of the cancer applications, there is a link to the state’s Comprehensive Cancer Control Plan (and to tribal plans, if they exist) as well as a direct link to specific goals and strategies that pertain to HBOC, Lynch syndrome, or cancer genetics in general. There is contact information for the state’s Cancer Registry, National Breast and Cervical Cancer Early Detection Program and Colorectal Cancer Screening Program, if one is available. If the state’s webpage includes a directory of cancer genetic counselors, this document is included; otherwise the National Society of Genetic Counselors “Find a Genetic Counselor” feature can be used. For familial hypercholesterolemia, data on cholesterol screening rates are provided, as is information on how to find a lipidologist and contact information for the National Heart Disease and Stroke Prevention Program. For all three applications, there are links to clinical trials databases, in part to help find researchers in a state with interest and expertise in a particular disease.
The clickable map is meant to be a living document that will be updated on a regular basis. Although we worked hard to find information to include, we are very interested in improving the map to make it more useful for everyone. Please review your state entry and let us know if any materials listed are out of date or whether you know of programs or materials that should be added under “Assessment”, “Policy Development” or “Assurance”. You can reach us by sending an email message to firstname.lastname@example.org. We also hope that you will use the clickable map to find out about activities going on in other states. As noted in the examples above, states which are currently funded by the CDC or which have received funding in the past (such as Michigan, Oregon, Georgia, Minnesota, Washington and Utah) have developed programs and materials that can be modified for use in your state. Other states, individually or in collaboration with others (for example, Connecticut, Colorado, New York and West Virginia) have made significant strides with limited resources. Learn about these projects by clicking into these states on the map, and consider contacting them to learn more.