This was a recent commentary I made in the Evening Standard….
In light of the recent story by Angelina Jolie in regards to her personal decision and experience to have a preventative double mastectomy, I believe it also sheds light on a few important topics for others to consider.
Genetic testing is a personal decision. In Ms. Jolie’s case she most likely made the decision to be tested due to her mother dying from cancer at the age of 56. However, genetic testing is not a routine screen that is indicated for the majority of the population. In fact, genetic testing is usually only used in patients that have already been diagnosed with cancer. There is a set criterion for family history, ethnicity, and age; there are environmental factors, work hazards, and social exposures that may also impact one’s genetic risk of a DNA mutation, and perhaps increase risk for cancer.
Genetic testing is costly. In the US for example, a typical BRCA1 and BRCA 2 test can cost $3000 to $4000. Most insurance do not cover the test, making patients responsible to pay for it out of their own pockets. With the additional impact of high deductibles and higher copayments it becomes an economic and personal decision for each patient.
The other impact on patients is psychological. A patient knows that they carry a genetic mutation and is now at higher risk of potentially getting a cancer at some point in their life. What decision do I make? Do I undergo an expensive procedure as a proactive measure to decrease my chances of getting cancer? Do I take the route of active surveillance with the guidance of a physician to monitor myself? Do I live in fear of knowing that I may get cancer, but do not have the means to do anything about it? Now that I know I have a genetic predisposition and increased risk for cancer, do I tell my family so that they can get tested and see if they have the same gene mutations as well? If they do, how will they feel about being tested and now having to deal with these types of decisions?
The cost factor will only continue to rise. As new drugs and therapies come to market, most will be targeted therapies based on the specific genetics of each cancer diagnosis. These therapies can be costly, and at times may only provide a few additional months of life, and those months may not always be high quality due to potential side effects.
The message for everyone to remember is that genetic testing can save lives. It should be used under the direction of certified genetic counselors to ensure that patients are properly screened to ensure they will benefit from genetic testing.
Genetic testing comes with a cost. The cost is not just monetary. The cost can also be emotional, physical, social, and spiritual. It is a personal decision.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM