For all the unintentionally insensitive and thoughtless things people have said to me over the years, no one has ever asked me the question, “Do you feel guilty for passing the gene for SELENON related myopathy to your sons?” Perhaps this question is a step beyond what most people consider good decorum, however I wonder how many people have thought it and stopped themselves from asking it out loud.
Now that I’ve got you thinking about the question, I’ll answer it.
I feel guilty for many things as a parent, but this is not one of them.
SELEON related myopathy is autosomal recessive which means both my husband and I need to have the gene for the disease to appear in our children. This is exactly what happened in our case. Had I chosen a different father for my children (To be clear, I don’t regret my choice), the recessive gene likely would have remained hidden for future generations to discover. Maybe it would have never surfaced. We have no way of knowing how long our disease causing gene has been lurking in our gene pool.
On the other hand, the gene for this disease and many others can mutate spontaneously. Meaning, a disease causing gene can appear in the affected child and not the parents. Was the gene passed down to me from my great great great grandfather? Or did it just appear in me? Same for my husband. We have some clues to this puzzle but we will never know the full story.
Also, parents pass along all sorts of undesirable genes to their children – ones that cause common ailments such as heart disease, ones that cause mental illness, or even ones that give the child a nose way too big for his or her face.
The more I learn about genetics, the more procreation seems like a roll of the dice. You never know what might happen even if you do prenatal genetic testing. Currently no prenatal genetic test includes all possible rare diseases and new rare diseases are discovered every day. When our boys were born less than two decades ago, a genetic test did not exist for their disease.
While science will certainly get there someday, we can’t genetically engineer our children to rid them of all possible diseases. What you get is what you get and sometimes unlikely events unfold.
I can live with that.
