In an attempt to identify why I developed breast cancer at such a young age, I met with a genetic counselor and decided to undergo what is commonly known as the BRCA1 and BRCA2 hereditary breast and ovarian cancer test. In fact, they tested for 32 different gene mutations that may indicate a predisposition to breast cancer and a variety of other cancers.
I have 2 baby nieces and 2 younger siblings so the decision was easy for me. It was also covered by insurance because of my age. I wanted that information. I believed it could save my life and possibly even save the lives of my family members. To me, having the knowledge, no matter how terrifying, was no question.
But I was appalled to find out that there is such prevalent discrimination against those who move forward with genetic testing and discover a mutation. While I am protected from being dropped by my current insurance company should a mutation be found, I was told legislation does not currently exist to prevent me from being turned away should I attempt to procure a new insurance policy or employer. Changing jobs, starting my own business, even shopping through the Affordable Care Act marketplace could (and likely would) cause me major problems and great expense from an insurance standpoint.
That is bullshit.
The difference between me and any other person who remains untested is simply information. Nothing more and nothing less. Being tested only gives me information about my likelihood of suffering a life-threatening disease. It gives me the chance to do something about it, to make decisions that could save my life or lessen my suffering by being proactive. Mutation information would also help me make immediate decisions about my treatment and ultimate survival chances. Why would anyone want to punish me for getting that information? It is shameful.
It is also unreasonable. While I don’t have certified stats and figures on insurance costs, I believe that acting to prevent catastrophic illness is in both my interest and the insurance companies’. Getting cancer is, I believe, far more expensive than preventing it. In fact, I can attest that I have spent (as has my insurance company) far more since being diagnosed with breast cancer than I ever did prior to on healthcare expenses. The difference is astronomical.
Is it a crap shoot? Sure. But, I believe people should be able, especially in the face of an unusual diagnosis or a strong family history, to collect as much information that will help them as possible and not be discouraged from doing so by fear of discrimination.
So, while I ended up having NEGATIVE test results, I am still disgusted that those that get unfortunate results have the added burden of knowing they will be treated unfairly for the rest of their lives. Simply for having information, these people will suffer twofold.
I hope you’ll join me in advocating for legislative protection of genetic testing privacy and discrimination. You can’t change your genes and you certainly can’t pick and choose the diseases that may result from them. And no one should ever be persecuted for acting in their own (and their family’s) medical interest.
A useful journal article on genetic discrimination: