Feeling the Genomic Pulse of the United States

A healthcare provider takes a good clinical history, feels the patient’s pulse, performs a good physical examination, and orders laboratory tests to diagnose and manage a health problem. In a similar manner, public health programs feel the pulse of the population by collecting data through population surveys, surveillance systems and health statistics to assess the distribution of health problems, risk factors and interventions in the population. The findings are used to inform and evaluate health policies and programs, like vaccinations or health education campaigns.

As Dr Tom Frieden, CDC Director, said in 2010: “The single most important thing public health can do is to increase the degree to which decisions are made with good data.” Genomics  is no exception. For example, for more than 30 years, CDC has assisted laboratories with quality assurance for newborn screening programs that detect treatable, inherited metabolic diseases. The Newborn Screening Quality Assurance Program currently includes laboratories in all states in the U.S., as well as in 67 foreign countries.  In addition, CDC has a long record in surveillance of birth defects and developmental disorders and selected genetic blood disorders.  In the last decade, as human genome research began to reveal the role of genetics in common chronic diseases, the CDC Office of Public Health Genomics funded model state public health programs to integrate genomics into their policies and programs. Recently, several state genetics programs have shared their population data online.  Examples include public awareness and collection of family history, prevalence of family history for specific chronic conditions, perceptions and use of direct-to-consumer genetic testing, and awareness of genetic testing for hereditary breast and colorectal cancers.

More recently, CDC’s Division of Cancer Prevention and Control announced the availability of funding to implement existing recommendations for using breast cancer genomic tests to address the needs of young women at high genetic risk. Public health surveillance will track the impact of these activities at the population level using indicators such as 1) increased insurance coverage of genetic testing and related clinical interventions, and 2) public and provider knowledge about breast cancer family history and risk assessment, including appropriate counseling and testing.

As genomics is a fundamental component of all human diseases, we predict that in the next decade, it will become an important aspect of public health data collection. Feeling the genomic pulse will be crucial in evaluating how this new technology is affecting health in the United States and around the world.

We are interested in hearing your views about genomics and public health surveillance, in general or for specific disease conditions.