Who is Involved in the Public Health Genetics System?

The public health genetics system comprises many different types of organizations and individuals that work together to deliver genetic services, including genetic testing and genetic 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.

Stakeholders

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 the need arise

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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 professional interact with genetics in multiple capacities 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, 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 help 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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Organizations

Listed below are different organizations that make up the public health system. Click on the logo to find out more about the organization. If an organization is missing, please contact phgw@phgw.org.

Education Programs

Professionals who work in the public health genetics 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

National organizations help develop tools and resources focused on helping individuals and families who need access to genetics services, and provide other supports to families at all levels of healthcare. Some of these organizations also help disseminate resources for specific genetic conditions from specific advocacy organizations.

Federally-Funded Programs

The federal government funds multiple programs to help support the genetics service system.

Governmental Agencies

In addition to support grant programs, the federal government develops its own tools and resources to support the system.

Non-Profits

Non-profits support both professionals and individuals/families via membership organizations.

State Public Health Genetics Programs

Click on the map to explore the genetics-related programs within each state.

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