Sunday, October 5, 2008

Prenatal genetic testing

I didn't do it and I'd make the same decision again, even knowing what I know now. If the doctor had told me, "Well, mom-to-be, you're about to have a two-headed, fire-breathing dragon," I would have said, "Then I guess we'll be adding fire extinguishers to the baby registry."

Who am I to decide what constitutes a worthy life or an excess of parental suffering? And where do we draw the line as a society? What if there were genetic tests to find out if your child would be obese, depressed, unkind, or just totally uninterested in attending your alma mater and reading The New Yorker? What is an acceptable reason to terminate a pregnancy? These "private" decisions have social consequences. And one such decision is the decision not to have a retarded child.

I want to live in a world that's welcoming to people of all kinds, and I felt when I was pregnant, as I do now, that the personal decisions we make help to create our world. It is okay to be different. Really different. Admittedly much harder than I thought it would be, but ultimately okay.

In addition to my ethical concerns about where society draws the line about worthiness of life, I also just didn't want to be in the position to have to make such a decision. So I refused the tests for Fragile X and Down Syndrome and other genetic abnormalities. Maybe a part of my subconscious already knew that my kid was special.

My only regret about not having the testing was that we spent about a year spinning our wheels trying to figure out why our child was so delayed, and it might have been nice to avoid the doctor visits, the insurance co-pays, the missed work, and the anxiety. On the other hand, for the first few months of my son's life, I felt like a "normal" parent for awhile. I wonder if an earlier diagnosis would have interfered with bonding and attachment. We didn't learn of his diagnosis until he was almost two years old, and I'm grateful for the time we had to get to know one another before the label.

I do worry that my child will suffer when he is older because he is different, and that troubles me ethically as well, knowing that perhaps I could have prevented that suffering. But then again, I also would have prevented the joy he brings to our lives, and the joy he clearly experiences as he learns about the world.

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