Your Genes, Your Health: The Importance of Genetic Literacy and Education

In March 2017, the National Human Genome Research Institute, in collaboration with the Foundation for the NIH and several private sector organizations, held an important strategic planning meeting in Bethesda, the Genetic Literacy, Education and Empowerment (GLEE) Initiative.  Advances in genomics over the past two decades are leading to opportunities to use genomic information in health care and disease prevention. The GLEE Initiative is envisioned to be a national campaign to enhance the genomic literacy of the U.S. population. It will focus on three target audiences, K-16 students, the general public, and healthcare providers. The meeting participants discussed proposed activities of GLEE and possible implementation plans.

The Office of Public Health Genomics at the Centers for Disease Control and Prevention fully endorses this initiative and looks forward to being an active participant in its implementation. A main focus of our office is to work with public health programs at the national, state, and local levels to increase genomic health literacy among the general public and providers. For example, genomic and family health history information can save the lives of thousands of people from premature heart disease and cancer. A current CDC public health effort, the #bringyourbrave campaign, raises awareness and knowledge about hereditary breast and ovarian cancer (HBOC) among providers and women at increased genetic risk for HBOC. As the science of genomics matures, new genomic tests with uncertain value—but with the potential for significant benefits and harms—will become available. It will be crucial for providers and the public to have access to evidence-based information to make informed choices to improve their health and that of their relatives.

Consider the following examples that demonstrate the need for enhanced genetic literacy among providers and the general public.

• Discussing a family history of breast and ovarian cancer with a healthcare provider may result in BRCA mutation testing and could provide the opportunity to intervene to prevent cancer.
• Reporting a personal history of colorectal cancer to a healthcare provider could prompt genetic testing for Lynch syndrome and provide the opportunity for at-risk family members to consider genetic testing for themselves and preventive screening.
• Reporting a family history of early heart disease can help a healthcare provider diagnose familial hypercholesterolemia, a common treatable genetic condition that requires aggressive cholesterol lowering and cascade screening in relatives of affected individuals.
• In the near future, using whole genome sequencing in clinical practices will provide vast amounts of genomic information without known clinical interventions and lead to the possiblity of unnecessary procedures and healthcare costs for patients.

Public health can help support providers and the general public in making informed decisions about the use of genomic information to improve health by

• Working with key partners to provide information, tools and resources;
• Promoting access and identifying and addressing disparities for underserved populations; and
• Measuring population progress and tracking disparities in achieving health benefits and minimizing harms of genomics and family health history information.

As the national precision medicine cohort (AllofUs) initiative is implemented in the next few years, the time is right for a collaborative effort to enhance national literacy and education in genomics and precision medicine.