Who is Involved in Public Health Genetics and Genomics?
Downloadable Fact SheetSocial Media GraphicsThe public health genetics and genomics system make up many organizations and individuals that work together to deliver genetic services, including genetic testing and counseling, and ensure access to genetic services for a population. Below, you can find more information about the various roles of individuals within the public health system, as well as organizations that contribute to the system.
Public Health Genetics and Genomics in Your Life- A Public Health Genetics and Genomics Week Case Study
Newborn Screening
Newborn Screening (NBS) is one of the largest state-run public health programs in the United States and is a key effort of public health genetics. At birth, each infant in the United States is screened for a number of genetic conditions. Infants identified with a condition can then receive treatment to help improve their quality of life.
Learn more about newborn screening and what conditions your state screens for at the resources below.
https://newbornscreening.hrsa.gov/
https://www.babysfirsttest.org/
Throughout Public Health Genetics and Genomics Week 2023, we will be highlighting different public health genetics and genomics efforts through the stages of an individual’s life. To learn more about public health genetics through the lifespan, view our infographic.
Individuals and Families
Individuals and families are the backbone of the public health system. They are the patients and consumers who need access to genetics services and genetic information, whether they have a genetic condition or are potentially at risk for a genetic condition.
Individuals with a genetic condition need access to genetic providers, genetic testing, and educational information to help assist with the diagnosis and/or management of their condition. For example, an individual who receives a diagnosis through newborn screening may require access to genetics providers when first diagnosed and then require services related to paying for care, assistance when entering school, and developing a plan to transition from pediatric to adult care. Along this continuum, the public health genetics system is designed to assist the individual in obtaining the services necessary to ensure adequate quality of life.
Individuals at risk for genetic conditions may require access to genetic testing due to an individual within their family that received a particular diagnosis or if they are concerned about their family health history or personal health history. The public health genetics system assists these individuals by providing education and ensuring they have access to genetic services should services be needed.
Learn More
- Baby’s First Test- Newborn Screening 101
- CDC- Genetics Basics
- Genetics Home Reference- What is Genetic Testing?
- NHGRI- Direct to Consumer (DTC) Testing
Healthcare Providers
Healthcare providers that interact with the public health genetics system include, but are not limited to, geneticists, genetic counselors, metabolic dietitians, genetic nurses, primary care providers, nurses, physician assistants, and other specialty providers.
Genetics providers (which include geneticists, genetic counselors, metabolic dietitians, physician assistants, and genetic nurses) provide services to patients including assessment, diagnosis, genetic testing, interpretation of test results, counseling, and management.
Non-genetics providers include primary care and other specialty providers, who refer patients to genetics when appropriate and also work with genetics providers to assist with diagnosis and management of genetic conditions.
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Public Health Professionals
Public health professionals interact with genetics and genomics in multiple roles, from newborn screening to education to building system capacity.
Named one of the greatest public health achievements from 2001 to 2010 by CDC, newborn screening is supported by public health professionals within each state. Public health ensures that each baby receives a newborn screen, and a timely result, and provides short and long-term follow-up support for individuals and their families who receive a diagnosis from the screen.
Public health at the state and federal levels helps support the capacity of the genetic service system by providing resources that can be used by healthcare providers and individuals, such as assisting with access to services and building tools that assist healthcare providers with their work.
Public health also assists with educating the public, as well as providers, on genetics to increase awareness and understanding of conditions and the needs of individuals with those conditions. For example, the National Coordinating Center for the Regional Genetics Networks (NCC) developed curriculums on specific areas of genetics to educate healthcare interpreters on genetics. By educating healthcare interpreters on genetics, they can provide better services to patients and families.
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Education Programs
Professionals who work in the public health genetics and genomics system are educated in public health and/or genetics programs. In the United States, there are a few public health education programs that allow students to choose to focus on genetics.
Family Support Organizations
Federally-Funded Programs
Government Agencies
Non-Profits
