Benefits & Risks of Genetic Testing

for Hereditary Colon Cancer Syndromes

Development of this resource was generously supported by Myriad Genetics. 

What are the benefits of genetic testing?

 

The overall goal of using genetic testing for cancer risk is to either avoid cancers or, if a cancer can’t be avoided, detect it while curable. If it appears that you could have a hereditary colorectal cancer syndrome, genetic testing may confirm it. Pinpointing the cause of cancers or polyps can provide a sense of relief. Some family members may be able to avoid unnecessary screening if they do not have the genetic condition. If you do have a genetic condition, you can be proactive about your health. Knowing what to expect can help you and your doctors make informed decisions about your health care. The knowledge can guide you and your health care team toward specific prevention, screening, and treatment options.

 

What are the risks and limitations of genetic testing?

 

Before you have a genetic test, a genetic counselor, or other knowledgeable healthcare provider, should explain the benefits, risks, and limitations of genetic testing. These include:

 

  • Physical risks: The physical risks are the same as any test that involves taking a tube of blood or inner cheek cells. Most of the risks associated with genetic testing involve the emotional, social, and/or financial consequences of the test results.

 

  • Emotional risks: Emotional responses can involve feelings of isolation, anger, depression, anxiety, or guilt. Emotional risks are not limited to people who discover they have a genetic condition. The test results may also affect family members who discover they do not have the condition.

 

  • Impact on family dynamics: Genetic test results can reveal information about other family members in addition to the person who is tested. Genetic testing may create tension within a family. Rarely, a genetic test reveals that someone’s father is not their father (non-paternity) or their parents are not their parents (an undisclosed adoption). While these are rare situations, learning this information can significantly alter someone’s self-identity and the family dynamics.

 

  • Discrimination: Health insurance and employment discrimination on the basis of a genetic condition is illegal under the Genetic Information Non-discrimination Act (GINA) and many state laws. For many people, however, this remains a concern, and genetic discrimination with your life or disability insurance may be a related concern. If you are worried about genetic discrimination, read more about this topic below.

 

  • Limitations: Genetic testing can provide only limited information about an inherited condition. The test cannot determine:

    • When a person will show symptoms,

    • How severe the symptoms will be, or

    • How the condition will progress over time.

 

Additionally, a “genetic test” does not test for all genetic conditions. Most genetic tests are limited to a single genetic condition or group of conditions. Therefore, genetic testing for hereditary colorectal cancer syndrome does not tell you anything else about your genetic makeup.

 

FAQs

 

1) How does genetic testing work?

 

2) What is the cost of genetic testing?

 

3) What have others experienced with genetic testing?

 

 

Click to view more information on Genetic Testing by GlobalGenes.org. 

 

 

* 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.

 

 

 

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