© 2017 Hereditary Colon Cancer Foundation

 

www.HereditaryColonCancerFoundation.org and www.HCCTakesGuts.org are informational and support websites for those affected by hereditary colon cancer syndromes. The website does not provide medical advice, recommend or endorse health care products or services, or control the information found on external websites.

 

Hereditary Colon Cancer Foundation and the Familial Adenomatous Polyposis Foundation are registered charitable organizations in Illinois and Utah, and tax-exempt under Internal Revenue Code Section 501(c)(3). Mailing address: 3519 NE 15th Avenue, Unit 518, Portland, OR 97212  |  info@HCCTakesGuts.org

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    Attenuated FAP, Cowden Syndrome, Familial Adenomatous Polyposis, Gardner Syndrome, 

    Hereditary Mixed Polyposis, Juvenile Polyposis Syndrome, Lynch Syndrome, Muir-Torre Syndrome, MYH-Associated Polyposis, Peutz-Jeghers Syndrome, Turcot Syndrome

    What is genetic discrimination?

     

    Genetic discrimination occurs when someone is treated differently because of a genetic condition. Examples of discrimination are:

     

    • An employer uses your genetic information to decide whether to hire, promote or fire you.

     

    • An insurance company uses your genetic information to determine eligibility for coverage or to set your rates.

     

    Fear of discrimination is a common concern. The Genetic Information Nondiscrimination Act (GINA) is a federal law designed to protect people from this form of discrimination. Genetic information includes genetic test results and family history information. GINA has two parts:

     

    • Title I prohibits genetic discrimination in health insurance and says that health insurance providers:

      • Cannot use genetic information to determine eligibility or set rates, and

      • Cannot not require you or a family member to take a genetic test

     

    • Title II prohibits genetic discrimination in employment, and says

      • Genetic information may not be used for hiring, firing, promoting, determining pay or assigning jobs, and

      • Employers cannot require you to take a genetic test

     

    There are important limitations to this law. GINA does not apply to:

     

    • Small businesses, defined as fewer than 15 employees,

    • The Federal Employees Health Benefits Program,

    • The U.S. military / TRICARE,

    • The Veterans Health Administration

    • The Indian Health Service,

    • Other types of insurance including life, disability, or long-term care insurance.

     

    GINA is intended to protect people in an ‘at risk’ status and does not apply to ‘manifest disease.’ For example, if you have a gene that increases the risk of colorectal cancer, you are protected under GINA. If you have colorectal cancer, you may be viewed the same as any other person with colorectal cancer, i.e. you do not have extra protection because yours is due to a hereditary condition. Read more about genetic discrimination from the National Human Genome Research Institute.

     

     

    FAQs

     

    1) What are the benefits and risks of genetic testing?

     

    2) How does genetic testing work?

     

    3) What is the cost of genetic testing?

     

    4) What have others experienced with genetic testing?

     

     

    * Information used to develop this page was sourced from the Genetics Home Reference and reviewed by the Hereditary Colon Cancer Foundation's Patient Education Team.

    Genetic Discrimination of Colon Cancer Syndromes

    Benefits & Risks
    Informed Consent
    What Patients Say
    Genetic Counseling
    Cost of Testing
    Types of Tests
    About Testing

    Development of this resource was generously supported by Myriad Genetics.