What are Public Health Genetics Programs?

Public health genetics programs are implemented from the community to the federal level to help integrate genetics into clinical care and assist patients in getting access to genetic testing, counseling, and other genetic services.

Find out more about specific efforts programs implement to assist the field of public health genetics.

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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 focus on genetics. Learn more about educational programs and find information that can be shared with potential students by clicking the button to the right.

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.

Example Programs include:

Georgia PKU Connect works with patients and their families who have PKU connect to needed services.

This program is an example of a local effort to support individuals and families.

Lynch Syndrome International works to provide information about lynch syndrome to the global community.

This program is an example of a global effort to support individuals and families.

RareAction Network is the largest advocacy network in the U.S. that works to improve the lives of individuals and families with rare disease.

This program is an example of a national effort that helps individuals and families advocate for their specific needs.

Federally-Funded Programs

The federal government funds multiple programs to help support the genetics service system. Grant programs range from offering specific services such supporting newborn screening to general services such as supporting access to genetic services.

Example programs include:

The Maryland Office for Genetics and People with Special Health Care Needs offers many support programs to individuals in Maryland. One program “Reducing Loss to Follow-up in Maryland After Failure to Pass Newborn Hearing Screening” is supported by the Health Resources and Services Administration to help assist the state’s newborn hearing screening program.

This program is an example of a state effort supported by the federal government to support or improve services to individuals and families.

UDN brings together individuals and researchers to improve knowledge about rare diseases.

This program is an example of a federal effort that supports the improvement of clinical knowledge by bringing together many individuals and families.

NCC works with the seven Regional Genetics Networks and the National Genetics Education and Family Support Center to improve access to genetic services for underserved populations.

This program is an example of a national effort that helps improve the public health genetics system.

Governmental Agencies

In addition to supporting grant programs, the government agencies develops its own tools and resources to support public health genetics.

The Texas Department of State Health Services offers many services related to genetics including offering newborn screening and genetics education to providers and patients. For example, the department offers specific tools and resources for healthcare providers related to cancer genetics.

This program is an example of a state effort to support providers and patients.

The CDC Genomics and Public Health Office offers a wide range of tools and resources to patients, providers, and researchers. The Public Health Genomics and Precision Health Knowledge Base is a continuously updated database that can be used by providers to stay up-to-date on genetics research and how it can be implemented into clinical services.

This program is an example of a federal effort to support the public health genetics system.

NHGRI supports research on genetic conditions, provides general genetics to patients, and helps develop tools for healthcare providers.

This program is an example of a national effort that helps improve the public health genetics system.

Non-Profits

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

Example programs include:

The National Society of Genetic Counselors offers a website to the general public to learn more about genetic counselors and offers information about where to find genetic counselors throughout the U.S.

This program is an example of how a national non-profit supports the public health genetics system.

Expecting Health, a national non-profit, provides support to expecting mothers and their families. The National Genetics Education and Family Support Center provides education and support to individuals and families who need information and access to genetics.

This program is an example of how a national non-profit supports genetics education.

Remember the Girls, supports girls and their families with x-linked recessive conditions, offers support services, including fact sheets, about x-linked conditions and their effect on girls.

This program is an example of a condition-specific non-profit that supports patients and their families through genetics education, patient registry, and emotional support to families.

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