New Toolkit Will Help Patients and Families Navigate Cancer Genetics

There are many misconceptions about genetic testing in cancer, but the SGO crafted a new toolkit to help patients and providers navigate the field.
BY ALLIE CASEY
PUBLISHED: NOVEMBER 21, 2016
The Society of Gynecologic Oncology (SGO) recently created the Genetics Toolkit to help providers, patients, and their families navigate the ever-changing field of cancer genetics.
 
CURE recently spoke with Kristin Zorn, M.D., a member of SGO about the importance of genetics in oncology, common misconceptions about genetic testing, and the upcoming changes and challenges for this field. Zorn is the director of the Division of Gynecologic Oncology in the University of Arkansas for Medical Sciences, College of Medicine, as well as an assistant professor in the Department of Obstetrics & Gynecology and the Division of Genetics.

What are some of the most important considerations in cancer genetic counseling?

One of the things we've seen over the past couple of decades is an increasing role that genetics can play in cancer predisposition, especially for ovarian and uterine cancer—so two of the most common cancers in my specialty are directly impacted by hereditary syndrome.
 
One of the hard things about ovarian cancer is, although we've made a lot of progress in diagnosing and treating it, we haven't made as much progress toward a cure as we would all hope. But the potential with identifying families with hereditary dispositions is that now we can help to prevent cancer altogether, and not have to wait for it to develop and try to catch it early and cure it, which we've really struggled with.
 
It's really important that genetic counseling and genetic testing go together. The counseling helps to explain to the patient and their family members what it means to undergo genetic testing. This isn't a simple check of your kidney function or your blood count. It's a test to see if there's a mutation in your DNA that can be passed through the family. It impacts not just you, but your family members that are directly related to you by blood.
 
And, a genetic predisposition can have implications not just for cancer risk, but for other decisions that you make in your life—about when you might start having kids—or how many kids you would have, life insurance considerations, for example. It has much broader implications than just knowing whether you carry the mutation or not. We want to make sure patients and their families really understand that going into the process.
 
The other piece of it is, a few years ago the Supreme Court invalidated Myriad's patent on testing for BRCA1 and BRCA2, one of the most common hereditary syndromes.  And that has really made the field much more complicated, because now there are multiple providers. That competition has helped to bring the cost down for genetic testing, but it’s also gotten more complicated in terms of insurance coverage. Some insurers, for example, contract with a specific company.
 
It's a challenging field to navigate and so part of that is also what happens with genetic counseling and testing, making sure that insurance covers it, and will there be copays or out-of-pocket expenses for the patient. That piece of it is pretty complex as well, much more complicated than a lot of other medical tests that we order.

Talk about this article with other patients, caregivers, and advocates in the Ovarian Cancer CURE discussion group.
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