Genetic Counselor Kimberly Banks describes why some women are afraid to undergo genetic testing.
Genetic Counselor Kimberly Banks:
We have maybe two to five women per year who come, sit at our table, go through all the information. We say to that woman, “We recommend this testing for x, y and z reasons,” and they decline, and that’s absolutely their right. That’s part of why we think of this as not just a blood test. We don’t want to draw your blood and send it off without you understanding and making that ultimate decision of whether you want the information.
When a patient declines, we’ll explore with her what the reasons are. For some women, it’s that they are not in a place in their life where they feel prepared to handle the information. They understand the implications, but they know themselves, and that they can’t handle the information.
Other women say that because of their family history, they already know that they are at high risk. They don’t want to know the specific reason why, and that they are going to do high-risk things anyways, so it doesn’t make a difference for their care. For each of those reasons, we’ll explore with them more and try to make sure that all their questions are answered and that they understand the information, but if a woman ultimately decides that she doesn’t want the information, we don’t force her down and draw their blood.
Other people express concerns about their insurability. Will this information affect their ability to maintain or have health insurance? We rarely have a woman decline anymore because of that reason because what we tell them is there’s federal and state laws in 47 states that provide protections against what’s called genetic discrimination.
The federal law is under HIPAA (The Health Insurance Portability and Accountability Act). It provides protections for women with health insurance through group markets. It does not provide protections for an individual policy, and that’s down to every specific state. So, you will need to research your state laws, usually through a genetic counselor, to find out in your particular state, what are the protections?
In California, the state legislation does provide protections in both a group and individual market. So what we tell patients is there are protections. We are unaware of any cases of women who have gone through this testing and lost their health insurance or have been charged higher premiums because of the genetic test results. But we always have to discuss, though, is that, insurance companies can use a cancer diagnosis.
So there are reports out there, or beliefs, that this is happening, and the question is, “Is it truly because of the genetic predisposition or is it because the cancer has already happened?” And so, there is a perception out there that this happens, but we have not found any documented cases of it. And we have followed up with our patients ascertaining, “What happened with your health insurance, your life insurance, your long-term care and disability insurance after your testing?” And we didn’t find any instances of inappropriate behavior on the insurer’s part.
About Kimberly Banks, M.S., C.G.C.:
Kimberly Banks, M.S., C.G.C., is the Program Coordinator and a Genetic Counselor at The Cancer Genetics Program in The Center For Cancer Prevention and Treatment at St. Joseph Hospital in Orange, California. Kimberly received her master’s degree in Genetic Counseling from California State University, Northridge, and conducted her fellowship at City of Hope National Medical Center. She is board certified by the American Board of Genetic Counseling.
Visit Kimberly Banks at St. Joseph Hospital Cancer Genetics Program: