Genetic Testing Puts Fate to the Test

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Prenatal testing may lead to an increase in abortions if mothers discover that their child has a disability before it is born.

By Angelina Caruso

Prenatal testing may lead to an increase in abortions if mothers discover that their child has a disability before it is born. (Courtesy of Flickr)

Like most people, there is someone in my life who has a disability. For me, Ally is this someone. What began as an effort to become friendly with our neighbors evolved into a beautiful friendship between my family and Ally’s. That being said, we’ve known Ally for over 10 years. She’s always ready to dance on command. She has a bright spirit and cherishes long walks and lazy summer days. In her company, I’m always guaranteed countless laughs and smiles.

Ally has Down syndrome. She’s a twin, but her brother doesn’t face the same challenges. In fact, he is “normal” in the sense that he doesn’t have Down syndrome. This is always a wild concept for me to think about. Their family’s Christmas card will come in the mail, and I’ll flip it over in my hands, greeted by the two high school seniors smiling with their heads pressed together. How did such varying fates manifest for two people who share such similar genes?

In recent years, science has been exploring extensions of the same question. The field of prenatal genetic testing is one of ethical implications and moral concern. Basically, these tests are offered to pregnant women during their first trimester to determine whether or not the fetus has certain genetic disorders.

Let’s say a woman gets tested. She finds out her child will be born with Down syndrome. Then what? This is a tough question to sit with. The ability to know such a breadth of information about children before they are born is a product of modern science. While the concept of genetic testing has been practiced since the early seventies, the accuracy and precision of today’s tests reflect great strides in scientific progression. With this portal into the future at our fingertips, it comes the inevitable moral question…do we proactively alter the fate of our unborn children? While these tests are optional, it is clear why they would be tempting. What becomes so complicated about this situation is that, because it is controversial, one is expected to have an all-or-nothing stance. An absolute for or against. But it is so much more complicated than that.

I can see positives and negatives to prenatal genetic testing. Down syndrome appears to provide the most accurate readings from these tests. According to The New York Times, the testing “…is so accurate in detecting Down syndrome that few, if any, affected fetuses are missed.” For mothers who find out that their child will be born with Down syndrome, this allows them to anticipate how parenthood will look for them. They have ample time to prepare for the challenges their child may face and how to effectively deal with them. But that’s an optimistic route. The news of a child with Down syndrome may lead some expectant mothers to abortion, afraid to take on the task of raising a child with a disability. While abortion is another discussion in itself, it’s simply being raised here as a possible negative to prenatal genetic testing. I say it’s a negative because I can’t help but think of Ally throughout this entire discussion. What if her mother had undergone testing and seen that one of her two children was bound to be disabled? Would she have chosen to abort both, just to “be safe”? How different would my life be, nevertheless the lives of Ally’s family? The world wouldn’t be the same without Ally down the street. I wouldn’t know the compassion that I so intimately do. I wouldn’t have the laughs and memories of summer barbecues and Sunday night dinners and drives around the neighborhood.

There is definitely a stigma that surrounds the idea of raising a disabled child. We automatically connotate this task to one of challenges and hardships. There are undoubtable financial concerns as well as emotional tolls to put into perspective. Children with disabilities face difficulty in areas of everyday life that other children don’t. This is what having a disability is. But having a disability doesn’t mean that living a full and happy life isn’t possible. What determines the fullness of life is subjective, so who are we to judge whether someone else’s life is better off not lived?

Where do I stand on prenatal genetic testing? I don’t have an all-or-nothing stance, and that’s okay. I respect the evolution that science has undergone in recent years. It is remarkable how far the field has come. Having the ability to acquire detailed knowledge to such an accurate degree is revolutionary. However, it’s not the testing itself that raises issues, but rather the decisions made because of it. I don’t think prenatal genetic testing should be frowned upon or stopped, but I do feel that it poses a threat to fate. I’m forced to wonder how many beautiful people would not exist today had prenatal genetic testing revealed results that prompted mothers to abort.
When it comes to issues that even remotely mention abortion, there is pressure to have a strong opinion on the issue. It’s okay not to. In fact, it’s probably best to keep an open mind and see the situation from all angles. I can’t speak for expectant mothers; I can’t put myself in their shoes. Maybe some have a past with Down syndrome in their families that was hard for them growing up, and are compelled to make a decision based off of this. Is this moral? More or less than someone who was never closely acquainted to someone with Down syndrome? This is why it’s difficult to take one side blindly.

How far will science go to see into the future? To alter fate? It’s hard to say. It’s equally challenging to imagine a world without Ally, who is far more than a test result.

Angelina Caruso, FCRH ’20, is a communications major from Bridgewater, New Jersey.