There are many different things to consider when deciding whether to have genetic testing. In addition to the impact of the test results on your physical and emotional health and that of your family members (more on that here), you should also consider your insurance coverage and the possibility of discrimination.
When I met with patients as a clinical genetic counselor, occasionally a patient would ask me, “How will this impact my insurance?” Or, “Will my genetic test results make it harder for my children to get insurance?” Some people even asked about the possibility of doing genetic testing anonymously and keeping the results out of their medical record. These questions are asking about genetic discrimination. Genetic discrimination is discrimination against an individual based on their genetic makeup: results of genetic testing, family health history, or participation in research or medical care related to genetics.
In the U.S., there are good protections in place under the Genetic Information Nondiscrimination Act (GINA) that make genetic discrimination related to health insurance and employment illegal. Specifically, heath insurance companies cannot take your genetic test results or your family history into account when deciding whether or how to insure you, and an employer cannot take these things into account when making decisions about your employment. This also means that health insurance companies and employers cannot consider the results of any genetic testing you may have when deciding about providing coverage for, or employing any children you may have. Health insurers, however, may determine whether or how to insure you based on current symptoms or the diagnosis of a health condition, even if the condition is genetic or was diagnosed through genetic testing.
GINA does have limitations. It does not cover members of the military or certain federal employees (although protections similar to GINA apply to these individuals through other federal laws) and it doesn’t cover life, disability, or long term care insurance. However, some states have additional laws that provide some protections in these areas. Other countries and areas may or may not have specific laws in place about genetic discrimination. Depending on the laws in your area and your personal situation, you may want to make sure you have all of the insurance coverage you desire prior to having genetic testing, just to be safe. A genetic counselor can be a good resource for basic questions on this subject. In the U.S., the Cancer Legal Resource Center may be able to help with more detailed or specific questions.
Some people may think about doing genetic testing anonymously; doing this is not a good idea for several reasons. One of the biggest benefits of hereditary cancer genetic testing is to find out if you have increased risk for cancer and, if so, to take measures to reduce your risk. In order for your health insurance to cover these risk reduction measures, they usually want to see positive genetic test results in your medical record.
In general, while there are some issues to be aware of, concern for genetic discrimination should not necessarily stop you from having genetic testing if your healthcare provider agrees it is appropriate for you and you otherwise want and would benefit from the information.
For more information on genetic discrimination, GINA, and its protections:
http://www.nejm.org/doi/full/10.1056/NEJMp0803964
https://disabilityrightslegalcenter.org/cancer-legal-resource-center
