Genetic testing for Breast Cancer gene

My doctor wants me to get tested for the breast cancer gene. Then I had a MRI that found some possible malignancy. If this turns out to be negative should I get tested for the gene? My mother died from breast cancer and was diagnosed at 47.  Is it "bad" on your medical record for insurance purposes if you are positive for the gene?

[Lisa Kessler, MS, CGC]

After following up with your doctor about your MRI finding, it sounds like you would benefit from meeting with a genetic counselor to talk about the benefits, risks and limitations of genetic testing.   A genetic counselor will take a detailed family history of all cancer diagnoses, and provide risk estimates for the chances that a BRCA 1 or BRCA 2 mutation is causing the breast cancer in your family.  The information that you learn from this meeting may help you make a decision about whether or not to have testing.  You can find a genetic counselor through the website for the National Society of Genetic Counselors (NSGC).  

In order to help with concerns about genetic discrimination, genetic counselors often discuss some of the current laws that are in place to help protect us from genetic discrimination.  This federal law is called “The Health Insurance Portability and Accountability Act (HIPAA)”.  HIPAA protects those with group health insurance from being denied insurance or having their insurance cancelled.  HIPAA has many limitations including not protecting those who are individually insured, not offering protection for disability and life insurance, and HIPAA does not prohibit using genetic information as a basis for charging a group more for health insurance.  Because of the limitations of HIPAA, several states have enacted their own laws to provide additional protection against genetic discrimination.  

In addition to the current laws, there is legislation underway to increase protections against genetic discrimination and this is called “The Genetic Information Nondiscrimination Act” (GINA).  GINA has already been passed by the House of Representatives, and it has not yet been voted on by the Senate.  It is reassuring to know that some protections against genetic discrimination exist.  For those with concerns about this topic, it can help to talk with your doctor or genetic counselor.  If testing is indicated for you and you have concerns about genetic discrimination, there are ways to pursue genetic testing confidentially through companies like mine, DNA Direct.