Genetics, GATTACA, and Grace

This just in. Here is One Of Those Moments. It is a sort of epilogue to the piece I wrote many months ago, called Knowing Grace. Grace is studying genetics (my favorite subject!) in science class. She went in a little over-prepared, because in my geeky excitement over the years I’d already taught her about Punnett squares, and basic concepts like the differences between recessive and dominant genes.

After her class learned the hard science, they moved on to ethics. They watched the movie GATTACA, to spur their thoughts about questions like, “Should parents be able to genetically modify their children’s genes before they are born?” Then, Grace’s teacher gave the class an assignment to write a response to that question. Her teacher, by the way, was clear with the class about her own opinion that genetic modification, in all forms, is not something she condones.

The assignment was for one paragraph. Grace wrote two pages. She laid out a detailed argument about why parents should be able to alter the genes of their unborn children. Specifically, she was in favor of modification in cases where the child has the genes for a condition, such as, for example, Tay-Sachs disease, that causes death in early childhood. She stressed the importance of remembering that movies like GATTACA are fiction. And that just because we are afraid of the hypothetical possibility that genetic alteration would lead to, say, a dystopian society in which prejudices and class systems become based on genetic makeup, we should not let this hinder scientific efforts to give parents who might pass on life-threatening gene differences to their children the chance to prevent this from happening.

Then, she said that she believes limitations to making such genetic alterations are important. And she gave an example: Herself. She said, “Even if I did not have the ability to have cochlear implants, I would not have wanted my mom and dad to prevent me from being born deaf.” She went on to say that being deaf has opened up a whole new world to her, and that she does not consider deafness to be something parents should be allowed to choose or not choose.

There were times, not long ago, when she would be so upset about the fact that she was deaf. Usually it was when she was experiencing a loss of self-confidence as the result of a big transition. Like, when she moved from a small independent school, where everyone knew her, to public elementary. She suddenly began questioning herself, unsure of her place in the social world, and uncertain of how to put herself out there.

Reading what she wrote for science class, I was struck by the complete conviction with which she made her case. And the total acceptance of herself that came through in those words. So, to all of you whose hearts are a little bit broken every time you think of your son’s challenges, or have to answer your daughter when she asks, “Why do I have to be this way?” I hope this helps, even a little. At twelve and a half, Grace cannot imagine herself any other way. And she would choose this self over one who was born hearing. She knows who she is, and that is the person she truly wants to be.