Access to information is truly astonishing. Noninvasive prenatal testing enables women to learn whether their children have certain abnormalities prior to giving birth. Historically, this kind of screening has been used to detect syndromes that are present and deleterious at birth or in childhood, such as Down Syndrome, Tay-Sachs disease, cystic fibrosis and others genetic disorders. (See Mayo Clinic Staff, "Noninvasive Prenatal Testing." Mayo Clinic. Mayo Foundation for Medical Education and Research, 23 Feb. 2013.)
However, as the genetics behind many genetic cancer predisposition syndromes have now been identified, some families are also screening for BRCA and Lynch mutations. As explained by Dr. Melissa Frey, a gynecologic oncology fellow at New York University School of Medicine:
There are two broad options for this type of screening -- this first is genetically testing the fetus after the time of conception. If the fetus is positive for the syndrome being tested, the parents might decide not to continue with the pregnancy. The second option is called Preimplantation genetic diagnosis (PGD), whereby the oocyte or embryo is tested for mutations prior to fertilization or implantation. This testing can only be done in the setting of in vitro fertilization, but has the benefit of avoiding selective pregnancy termination as a way to prevent children from inheriting a certain mutation.
While I believe both these methods are incredible and useful, I think the decision of terminating a pregnancy or preventing implantation of a fetus with Lynch Syndrome does not fall into the same category as other diseases that can be screened for.
Firstly, Lynch Syndrome is a predisposition, not a certainty. Having Lynch Syndrome does not definitively mean that an individual will develop cancer. Secondly, even if an individual does have the mutation, the cancers caused by Lynch Syndrome are unlikely to develop for many years. Lastly, as research on the genetics of Lynch Syndrome and the role of cancer screening continues, we cannot at the present time conceive of what will be available to children born with Lynch Syndrome at the time they reach the age to discuss and begin screening.
I have thought a lot about this and I, personally, do not view Lynch Syndrome as worthy of being included in the corpus of syndromes and disorders that require the serious considerations over whether one should bring a child who has such a condition into the world. However, I recognize and respect that others might not feel the way I do about this decision.
I personally would not select out or abort a fetus because it tested positive for Lynch Syndrome. I find it ironic that a living person has to wait until the age of 18 to have genetic testing, but an unborn child's parents can determine whether or not the child has Lynch Syndrome before birth. More to the point however, is the fact that while Lynch Syndrome seriously increases one's risk of cancer, it is not an absolute inevitable. Additionally and significantly, Lynch Syndrome does not impose itself on my daily life, and the majority of issues I face emotionally as a consequence of having it are not directly related to the mutation itself. Instead, most of the emotional issues I face in relation to my mutation are the result of losing my mommy and her family, and the fear that I will succumb to the mutation like they did. However, I truly believe that the cancer screening I do will enable me to live a long and healthy life. Thus, even if my own children do have the mutation, which they have a 50 percent chance of having, they will not have the additional burden of feeling the sadness of losing their mother. Furthermore, I am the only person in my immediate family who has Lynch Syndrome, so there is no threat that my brothers, sisters, and parents will have cancers caused by Lynch Syndrome.
Even if those additional factors were not present, and other members of my immediate family did have Lynch Syndrome, I could not abort or select away from a child with Lynch Syndrome. There are so many disorders, conditions and mutations that can happen. We live in an unpredictable world. There is no way to know what will cause each of us pain, and if you ask Kant, what will truly make us happy. We cannot control everything, and yet a parent's job is to protect his/her child to the extent he/she can. As such, I, like many others, believe in screening for disorders that truly impact an individual's daily quality of life. I do not consider Lynch Syndrome to be such an imposition as to select away from it.
Lastly, I am always hopeful that by the time my children are old enough to be tested for Lynch Syndrome, which is at a minimum 18 years from now (as that is the age suggested for testing, and I am not pregnant nor do I plan to be for some time), scientists and doctors will have developed some sort of gene therapy that corrects Lynch Syndrome's DNA repair mechanism error. Well, I actually hope my children won't have the mutation, but if they do, I hope for myself, for them, and for everyone else with Lynch Syndrome that there is a way to correct our mutated DNA before it causes the plethora of cancers that it can.
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