From 2004 to 2024, the Health Resources and Services Administration (HRSA) funded the National Coordinating Center for the Regional Genetics Networks (NCC). NCC developed and maintained the Genetics Policy Hub.

 

With the conclusion of NCC funding, the Genetics Policy Hub (GPH) will no longer be updated or maintained. Information on GPH should be used for historical reference only.

Cancer Genetic Testing

Updated On Sep 19, 2024

This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.

Introduction

Cancer genetic tests can help people understand their risk of developing cancer. It can also help people with cancer determine the best ways of treating their cancer, as some treatments are better for those with certain genetic profiles.

The American Cancer Society has written a primer, “Understanding Genetic Testing for Cancer: Genetics, gene mutations, and cancer risk,” with more information. Their website can be accessed here.

Legislation and Regulation

There are no laws or regulations specific to cancer genetic tests. Genetic tests are regulated at a federal level by the Food and Drug Administration (FDA), the Centers for Medicare and Medicaid Services (CMS), and the Federal Trade Commission (FTC). For more information on how tests can be evaluated, review the National Human Genome Research Institute (NHGRI) website page about genetic testing.

Additionally, some states place additional regulations on genetic tests. The National Human Genome Research Institute (NHGRI) has also cataloged individual state statutes and legislation, which can be accessed here.

Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.

Policy Positions

Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on cancer genetic testing. Explore these position statements below.

 

Position Statements by Organizations
The Role of the Oncologist in Cancer Prevention and Risk Assessment
Organization
American Society of Clinical Oncology (ASCO)
Subject
Cancer Genetics
Date
February 20, 2009
Strengthening Evolution Education
Organization
American Society of Human Genetics (ASHG)
Subject
Cancer Genetics
Date
April 11, 2012
Genetic Testing for Cancer Susceptibility
Organization
American Society of Clinical Oncology (ASCO)
Subject
Cancer Genetics
Date
September 21, 2016
Breast Cancer Screening
Organization
"Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN)"
Subject
Cancer Genetics
Date
July 31, 2017

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