Yesterday, I stumbled upon an article in the New York Times titled Gene Studies of Autism Point to Mutations and Parents’ Age. The article wasn’t anything particularly earth shattering. It simply highlights what people have been guesstimating for some time now. Much like many other things, the chance of a child being born with Autism increases with the age of parents at conception and is more likely when the father is over 35. Additionally, a group of genome scientists {read: people way smarter than this girl}, have pinpointed a genetic determinant in many cases of autism.
While I find this information extremely interesting, and likely very helpful to our society and also to parents who have children who are autistic, in another vein, all this info on the gene scene can be a little too much at times. Perhaps I sound like I think ignorance is bliss {it isn’t, right?} but the more that we know about what’s swimming in our gene pool, the more I fear, people will want to know.
When I was pregnant with both boys, the doctor’s office inquired if we would like to have genetic testing. Because I worked at the CF Foundation, I immediately declined. Many people found that confusing. I worked for a cause that was 100% genetic and yet, we had no inclination to find out if our child could have the disease.
Cystic fibrosis is one of the diseases included in the common prenatal genetic testing panel. Cystic Fibrosis is a genetic disease. If both parents are carriers of the gene {something that most people are unaware of}, there is a 1 in 4 chance that a child born to them will have CF {and here is my shameless plug for the cause… find out more and donate to GREAT STRIDES here}. Here’s the thing, after working with so many incredible families affected by the disease, I knew one thing for sure: I had never met a family who, after knowing their beautiful child, would have wished instead to have no child instead of one with CF.
Having no ethnic heritage that would often pre-dispose us, being under 35, and having no family history of major genetic disorders, we chose to forgo testing in favor of enjoying the pregnancy.
Genetic testing in utero is absolutely a personal preference of the parents-to-be, but I fear that over time, the options will become too available. For now, we are privy to knowledge such as if a child has CFF or Down’s Syndrome, and that knowledge, could be useful but what happens when people start paying to find out the nitty gritty… does my child have a genetic disposition to have connected digits…does my child have the autism gene? If, in another decade, it becomes easier and easier for people to discover the dish, will people be less likely to procreate? Will those who have only the opportunity of passing something along to their peanuts decide to forgo family?
There are so many things about parenting that are unknowns. You are bringing an entire human being into the world. And part of what makes it so fascinating, so miraculous, is all that is unknown. So what do we do with the gene scene and how do we use the facts we find for good?
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