In the essay by Darshak M. Sanghavi, M.D. (December 5, 2006 New York Times), the pediatrician discusses the controversial use of preimplantation genetic diagnosis for choosing embryos with traits usually thought of as genetic defects.
The parents about whom Sanghavi wrote want their children to share with them the traits they feel have made their lives uniquely rich -- specifically for this article, dwarfism and deafness.
It seems audacious that a parent would attempt to hold so tightly to the reins of their child's life. Is this just our neurotic can-do society run amok?
Like virtually all parents, I learned through some tough experiences just how much control I could have over my child's journey through life. But I want to try and grasp the thinking of these parents, who are admittedly not creating defects but are instead facilitating the embryos' development with the help of PGD. While on one hand they might be considered an aberrant few, a study by the Genetics and Public Policy Center at Johns Hopkins University indicates that 42 percent of IVF clinics allow the use of PGD for non-medical gender selection and three percent for the purpose of selecting a chosen disability. The survey, to be published in a coming issue of Fertility & Sterility, garnered responses by 190 of the 415 ART clinics in the U.S., representing a total of approximately 3,000 PGD cycles in 2005. The researchers estimated that four to six percent of all IVF cycles in the U.S. include PGD technology.
In order to understand the desires of these parents, who express a loving wish for their children to have what they've had in life, I've searched for traits within myself, characteristics with which I entered the world that make me different from the norm. Where do I begin? I cannot. The list is interminably lengthy, and all of it is undeniably worthy of value judgement in some eyes. Which of these things would I want to do without, if my parents had been able to choose? It's a moot question, sort of like pondering all the other what-if's of life.
Everything about me is unique. Some of it is different from statistical norms. Some of my traits are valued by others, while others are not. Some of it makes my life enjoyable, some makes it hell. Who the heck would've known any of the ramifications of my characteristics when I was a mere embryo?
So, if I instead take the stance of assessing my life's experiences, regardless of if they sprang from a genetic condition or otherwise, I can list several things that might be viewed as both debilitating and blessing, at the same time, depending on the observer:
the pain and trauma of losing unborn children;
the pain and trauma of watching my own child be permanently injured in an accident;
the fear that I am likely genetically predisposed to several life-threatening physical conditions.
Do any of these things make my life no longer worth living? No, although my experience whispers to me that I understand a parent who wants to die after losing a child. Have these things made my life richer? Yes, after a great deal of conscious, daily effort to make it so. Would I ever, if possible, choose these struggles for anyone I love? Absolutely not.
I obviously lean toward the stance that parental choice of genetics is a slippery slope. Still, I've tried all of my life with some success to see the world through others' eyes when possible.
When I was managing an online community for people struggling with infertility, an occasional heartfelt discussion would pop up regarding which situation was "worse" -- never having conceived at all or having conceived and had miscarriages. Both groups would have no offspring to show for all their their efforts and desire. Those who had never become pregnant sometimes thought, well, at least the other group had experienced the joy of seeing pink lines on a wand and that joy could lead to more hope for future pregnancies. Those who had conceived and lost pregnancies usually experienced an 'ignorance is bliss' reaction to their pain, thinking that those who had never become pregnant, never known the pink line emotional rush, were likely better off for still having an untainted sense of innocence in the matter. Naturally, all of us in the discussion knew that none of us were the lucky ones.
I was in the lost-pregnancies camp. Would I have it any other way? Would I rather, at that point in my life, have never become pregnant or known if I could, when my entire prior life was building up to that expected pinnacle? I can't even offer conjecture. As everyone does, I dealt with what I was given by the Universe, or God, or Nature, or the Fates, or whatever You call it. Would I want the responsibility of choosing any of my experiences for anyone else?
I think the closest I can come to actually relating personally to someone with a physical trait that's not the norm is through my son's experience.
For a few months following an accident, I had no choice but to ponder the possibility that my then-two-year-old son might walk in an attention-getting manner for the rest of his life. I can tell you that I viewed anyone with awkward physical disabilities in a vivid light after that point. Imagining your child's future in terms of a difference or disability -- the language matters not, at the point of imagining -- is a mental exercise not everyone has the opportunity to perform with a factual basis.
My son has grown to the age of seven hearing his injured and surgically reconstructed foot referred to as a "miracle." It was easy to keep negative connotations out of my vocabulary -- no defect, no disability -- and he accordingly viewed his fortunate medical marvel as simply that: his right foot. For a time, as we traveled several times each week to physical and behavioral therapy sessions, we were included in a community that was new to us, full of other parents and kids who were busily patching up lives that were at least temporarily broken. It was, to be sure, a valuable village that enhanced our lives. As he gets older and we no longer have need to interact with that world, my son is more often confronted by the reality that his foot is "different." Most kids are remarkably kind in their questioning, with which my son is typically patient in answering. Sometimes he is teased.
While the related journey -- mine and his -- could be said to have enriched our lives in a way that no ordinary circumstances could, I cannot fathom ever choosing the situations in which we found ourselves.
One person's crushing disability is another's path to fulfillment. No one, not even the most loving parents, gets to choose another's perspective for him or her. A parent may be able to choose an embryo's conditions, but there are no guarantees that the resulting child's perception will match that of the parent.
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