Genetic testing in children is a highly complex topic, and it is something which I frequently think about because of my son.
Georgia Hurst is a patient advocate for those with Lynch syndrome. She has the MLH1 mutation and fortunately has never had any cancer. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter, and her advocacy work has afforded her opportunities to write for medical journals, various websites and genetic testing companies, as well as collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. Her loves include: her son, her dog, books, photography, long walks in the woods, and seeking out fungi after the rain. Her motto is: "There is enough misery in the world – there’s no need to contribute to it.”
Genetic testing in children is a highly complex topic, and it is something I frequently think about because of my son. I would love to have my son genetically tested for Lynch syndrome, but he is 16 and it is highly recommended that I wait until he is 18. Even still, he will be an adult at that point and he may opt out of knowing, regardless of my desires. Not to mention, the genetic testing of children is far more complicated than that of adults.
There are many social, ethical and legal issues raised with genetic testing and children that should give us pause; some may argue that they are observing Lynch cancers manifesting earlier and earlier in subsequent generations within their families, and therefore testing children is warranted. The earliest manifestation of a Lynch cancer in my family was 36. My genetic counselor told me that if my son were to test positive for Lynch, it would be optimal for him to start his colonoscopy and others screening in his mid-20. Genetically testing him prior to adulthood may be more harmful than beneficial to him at this point. In most cases, children are shielded from genetic testing specifically if the gene mutation presents itself in adulthood.
There are very few things that younger individuals are actually genetically tested for. One of them is FAP (familial adenomatous polyposis) which tends to manifest in the form of hundreds, if not thousands, of colon polyps, that have the potential to become malignant.
* Genetic conditions involve a largely unpredictable interplay of many factors and processes. Just because you hold a genetic mutation for something does not necessarily mean it will be expressed in your lifetime.
* Some argue that genetic knowledge about one's future health should not be pursued unless the information can be of practical use. Lynch-related cancers tend to be rare during childhood.
* Genetic testing may benefit a family, but it may compromise a person's right to privacy
* Parents are not always qualified to determine what is in the best interest of the child, merely because they are the parents.
* When is the best time to discuss a genetic disorder with a child? Best answer: it depends the child and the situation.
As much as I want to test my son for Lynch syndrome, I fully understand that at this point it would be for my benefit and not his. It would be an exceptionally selfish move on my part to have him tested. There is nothing in my family history to suggest he be tested prior to 18 years old; furthermore, he should make the choice for himself to be tested.
Regardless of my thoughts and strong opinions on the matter, I believe he should be afforded the freedom of choice as to whether or not he is tested. Taking that away from him would open up an entirely new can of worms that I am not quite sure I am ready to deal with at this point. Many people with Lynch syndrome have a hard time reconciling their own diagnosis. I cannot fathom imposing such a scary diagnosis with such a deep level of uncertainty onto a child. Some may say that you could test the child without them knowing, but that would be deemed unethical, especially if you withhold that information from the child, not to mention of depriving them of their freedom of choice. Childhood should be a time of happiness, free of most pressing issues, particularly those regarding health which do not typically manifest until adulthood.
My son has dealt with enough in just watching me go through my prophylactic surgery, recovery, making sense of my diagnosis and all of the other things that have manifested as a result. The gravity of this diagnosis is too much for me to bear at times; I could not impose this upon him.