Genetic Testing was Right for Me
I occasionally post serious blogs, and there won’t be many that could be more so than this post. I hope you read this anyway. It could save your life or the life of someone you love. Colon cancer is prevalent on my mom’s side of the family. My grandmother, great grandfather and great uncle had colon cancer. My mom passed of ovarian cancer, and a great aunt had breast cancer. In its infancy, I feared genetic testing. What happens if I have the gene mutations, and my insurance company drops me? If I do have the gene mutations what treatments will I have to undergo? I had to decide whether genetic testing was right for me.
I spoke to a genetic counselor who assured me that my health insurance company cannot drop me due to the Genetic Information Nondiscrimination Act (GINA). According to this article published by the NY Times, GINA does not cover life, disability or long-term care insurance policies.
Health insurance companies are willing to pay for more tests to detect cancer early, as well as surgical procedures to decrease one’s chances of contracting cancer. For instance, many health insurance companies will pay for a mammogram and an MRI, alternating each every six months. Additionally, one can get an annual ovarian ultrasound, which I’ve already been doing since my mom passed. Or, one can choose to remove the ovaries if that is appropriate.
Approximately one month ago I decided to undergo genetic testing for the BRCA1 and BRCA2 genes and Lynch Syndrome because of my family history. The BRCA1 and 2 genes have been linked to increased odds of developing breast cancer. Lynch Syndrome has been linked to colon and a variety of other cancers. Although I’m obviously not going to get prostate cancer, I learned that its prevalence on my dad’s side of the family increases my cancers of contracting other types of cancer.
I received the best possible news and learned that I do not carry the BRCA1, BRCA2 or Lynch Syndrome gene mutations. Today I’m celebrating the outcome of my tests. At the same time, I ponder what would have happened if my tests were positive. Could my life insurance carrier increase my premiums, deny future coverage or discriminate against other family members? My employer pays for my long term disability insurance. But that isn’t the case for most people.
Currently, insurers claim they are not using the tests to discriminate against people who carry the gene mutations. In fact, insurance carriers build their revenue platforms based on lifestyle choices such as smoking or not smoking, so the precedent is already set. The insurers may not charge higher premiums or dropping coverage right now, but these practices are not banned and could be implemented in the future.
I wanted the peace of mind that genetic testing can provide. But my advice to you would be to talk to a genetic counselor who will help you weigh the risks and benefits for you and, potentially, for your family. This article by the American Cancer Society may also help you choose whether genetic testing is right for you.