P-Babies: A Moral Dilemma?
Dear Ed: My wife and I have been married for a little over a year. My parents love Ellen and knew all about her psoriasis months before we were married. Ellen is about 30% affected and most people don't notice because she dresses from neck to ankles. A few weeks ago we mentioned to my parents that we were trying to get pregnant. Later my mother asked me in private if Ellen's psoriasis was hereditary. The question blew me away. We didn't talk about it very long. I said that a genetic factor was suspected and research about the hereditary aspect of psoriasis was being conducted. (I was right, wasn't I?) Anyway, I never asked my mom why she asked and am afraid she might think it is irresponsible of us to have a baby knowing it might suffer a lifetime of psoriasis. My mom will probably let the issue rest and I'm reluctant to tell Ellen that she ever mentioned it. Ellen has managed to live a great life, so far, in spite of her psoriasis and we want a family. What is the difference between our child's maybe having psoriasis, or having hereditary heart problems, which happen to exist on my side of our family? (At twenty-four my blood pressure is already a problem and I've been warned repeatedly to watch my diet.) In case it's not clear, I am looking for a little moral support here. -Concerned in Cambridge
Dear Cambridge: You've touched on a subject about which I waxed too long in Flake: Confessions of a Psoriatic. Most of us do believe psoriasis is caused by a genetic anomaly and, as such, it can probably be inherited. NPF-sponsored studies are in progress. What could they lead to? Hopefully some sort of gene therapy that inhibits the proclivity from triggering. When is such a breakthrough likely? Nobody wants to speculate, but it would not be a good idea to hold your breath.
The moral obligation (or lack thereof) of psoriatics to future generations remains an ethical issue that I think warrants study on several levels. First, on the root level, Ellen needs to answer this question: Is my life worth living? Secondly, if I have a P-baby, can I honestly teach that child that life is worth living in spite of the psoriasis? Next level: Ellen needs to ask, is my life a plus or minus for my loved ones? near-society? extended-society?
If the answers to all these questions are "yes"and they certainly should be, because psoriasis isn't usually debilitating, especially not mentallythen procreating, even if it means perpetuating the disease, can't be a bad thing. It can and is unfortunate, but it certainly isn't bad, and it shouldn't be thought "unethical."
Another thing to think about: Just as P-parents have normal babies, P-babies are born to parents who do NOT have psoriasis. Whether or not the P-free parents unwittingly carried a genetic anomaly that made this happen, or if it occurred as an aberration in the development of the fetus in utero is unknown. The point I want to make here is, if P-babies are inevitable, it's comforting to think at least some of them will be raised by a parent with experience, someone who can help the child put its psoriasis in an appropriate perspectivein other words, a positive role model ... like Ellen.
Your comparison of psoriasis and heart ailments is also poignant and important to this consideration. Perhaps your parents did not know when they conceived you that the "heart problems" pervading your family line(s) were probably hereditary. Chances are, though, they had some inkling. Did that stop them? Do they regret having given you life? Do you regret it?
Psoriatics have made, and will continue to make, valuable contributions to our societiesnear and extended. The chance that any P-baby might grow up and also make a valuable contribution far outweighs, in my mind at least, the fact that they may flake along the way. -Ed