When To Test Children For Hereditary Colorectal Cancer

Hello, and welcome to my very first blog post! I’m thrilled to be working with my fellow providers and advocates to spread the word about hereditary colorectal cancer. Prior to starting my work with Ambry 2.5 years ago, I worked as a clinical cancer genetic counselor at Dana Farber Cancer Institute, and specialized in hereditary gastrointestinal (GI) cancers. I saw many patients and families who were at increased risk for GI and other cancers due to a confirmed hereditary syndrome or an increased presence of cancer in the family. Earlier this week, Dave Dubin eloquently highlighted the impact that Lynch syndrome, the most common hereditary GI cancer syndrome, had on his family and discussed the process of his children getting tested. In my clinical practice, this was oftentimes the first question I would get when discussing testing with patients who had kids: “how will this impact my children?”

Testing children for an inherited disease is a sensitive subject and may oftentimes bring up feelings of guilt in parents. As a genetic counselor, it is part of my job to be empathetic, but also to ensure that my patients understood that we all have something that we’ve inherited from our parents, and it’s nothing anyone can control. At least if we find out about it, we can take many steps to reduce the risk for diseases, like cancer. 

There’s also the question of when to test children. Many parents with younger children (under the age of 18) are motivated to get the testing done as soon as they find out they are positive, because they “just want to know”.  This desire is perfectly natural and understandable, yet there are many reasons why it’s important to wait until a child is over the age of 18 before pursuing testing for certain conditions, like Lynch syndrome.  Lynch syndrome is considered an adult-onset condition (meaning disease, like cancer, doesn’t tend to happen until adulthood), and the vast majority of the time, there are no changes to medical management until an individual is in their 20’s. There’s also an ethical argument of waiting until an individual is of a consenting age (18 or older in the U.S.), so they can decide for themselves if/when they would like to be tested. There are other, more rare, hereditary GI conditions, like familial adenomatous polyposis, where cancers can present in childhood, so it becomes medically important to consider testing children. Although not always easy or comfortable, awareness and open communication is key when discussing a potential genetic predisposition to cancer in a family. If you have questions about whether or not your children should be tested for a particular hereditary condition, discuss this information with your healthcare provider.

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The information, including but not limited to, text, graphics, images and other material contained on this blog are for informational purposes only. The purpose of this blog is to promote broad understanding and knowledge of various health topics. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this blog. Ambry Genetics Corporation does not recommend or endorse any specific tests, physicians, products, procedures, opinions or other information that may be mentioned on this blog. Reliance on any information appearing on this blog is solely at your own risk.


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