Genetic counseling is a bit of a scary thought to me, because it does in fact mean that sometimes cancer is just hereditary. The percentages of hereditary cancers do appear to be low (5-10% of breast or colon cancers) but the fact remains that those odds exist. Genetic Counselors at Dana-Farber can tell you whether or not you have a hereditary cancer risk.
Your personal and family history is important to the counselors. It allows them to determine whether or not you should start taking steps to lower your risk. This genetic counseling aims to find any vulnerabilities that would differentiate you to your doctor: allowing for earlier and more frequent cancer screenings, tailoring your health care to lower your risk and maximize your chance for a cure, and to prevent you from being blindsided by a cancer diagnosis. Anyone can participate in genetic testing, both those who have had cancer and those who are just worried that they may be at risk.
So what IS genetic testing? Genetic testing is almost like a spell-check. If your genes are “misspelled” that means there’s a chance of a mutation developing. More treatment is being done based on genetic markers versus where your cancer is located (Precision medicine! It’s all related!) which is why this is becoming more popular amongst people who may be at risk.
It takes about a month to return your test results, but if the testing is being used to determine a course of treatment in someone who has already been diagnosed, it can be expedited so it can be used in the making of those decisions. Additionally, the labs that run the tests are continually evaluating any uncertain variants (which are “spelling errors” that have not been determined to cause mutations and cancer) in your genes. As more research is done, more discoveries are made, and the technicians can go back to re-evaluate and provide doctors and patients with more definitive answers about these variants. This is how it was determined that the BRCA1 and BRCA2 gene mutations are a sign of a risk of breast and ovarian cancer.
One specific area that was a concern of the attendees of this talk was in regards to health insurance. Do they have to pay? Can they use this information against you if in fact you are at risk?
The answer to the first question is no. This is where people like you and I come in. Donations to the Jimmy Fund help to pay for genetic testing when insurance doesn’t cover it. Donations provided one family with genetic testing that allowed for a change in the patient’s treatment for breast cancer. Additionally, because it was a hereditary gene mutation that caused her cancer, the Jimmy Fund was also able to cover testing for her children. Full body MRIs to scan for cancers were performed, which in turn helped diagnose a sarcoma in one of the children that was subsequently treated. Without the genetic testing and MRI, there’s no telling when the sarcoma would have been discovered.
The answer to the second question, thankfully, is also no. Under President Bush, GINA (the Genetic Information Nondiscrimination Act) was signed into law in May of 2008. This law prohibits insurance companies for using the results of genetic testing to determine health insurance rates and access.
Genetic counseling is definitely still a scary thought, but it has been proven to be helpful in cancer prevention and treatment. As someone who has a family history of breast cancer, it’s something that I may have to consider at some point. Thanks to the Jimmy Fund and Dana-Farber, the concern of paying for this testing would, at least, not be something I need to take into account when deciding.
To donate: http://www.jimmyfundwalk.org/2016/leede