In a recent NY Times article, Katharine Moser discusses why she chose to have a genetic test showing that she would, without a doubt, suffer the same fate as her grandfather — she carries the gene for Huntingdon’s Disease. At only 23 years of age, she gave up all dreams of marriage, parenthood, and a slow graceful progression into old age for the certain knowledge that one day she, too, will suffer cell death in the brain, which will cause her to jerk and twitch uncontrollably and rendering her progressively unable to walk, talk, think and swallow. And possibly earlier than her grandfather who first showed symptoms at the age of 50, because she had more “repeats” in her fourth chromosome of the letters “CAG” than he did.
If there were a genetic test that would tell me if I would have any of the myriad of autoimmune diseases running rampant in my family, would I want to know? At the moment I don’t think I would, although I’ve already made many of those critical life choices – marriage, children…Would I want to know if my children would have those diseases? Would I want them to know? For now, I think I would rather live optimistically and hopefully. But what does that mean? Does that mean plodding along as if I have all the time in the world? Or does it mean making choices as if each day might be my last (or at a minimum my last without a condition that might impede my physical or mental abilities)?