Tilted Forum Project Discussion Community - View Single Post - is there a medical ethicist in the house? passing on genetic disoders

lurkette · 06-15-2007, 11:55 AM

As many of you know, my brother had a genetic disorder of which I am almost certainly a carrier. It's called hipohydrotic ectodermal dysplasia (HED). http://en.wikipedia.org/wiki/Hypohid...rmal_dysplasia. The manifestations are a lack of sweat glands, inability to regulate body temperature, very dry skin, sparse hair and teeth (he had dentures all his life; I still have half a dozen baby teeth), and a propensity to respiratory infections (asthma, pneumonia, bronchitis) and autoimmune disorders (allergies, canker sores, etc.). It's x-linked recessive, so assuming I'm a carrier and there's no test (there isn't) to see if the fetus has it, there's a 1 in 4 chance I could have a boy with HED. Here's the punnet square equivalent for those of you who are prone to argue semantics and probability. Let's assume I'm a carrier, with the big X representing the affected x chromosome from my mom:

xx girl, not a carrier
xy, boy without HED
Xx girl carrier
Xy, boy with HED

There are 4 possible outcomes, with one of them being having a little boy with the disease.

So here's the deal. As I struggle with whether I want kids or not, this is one of the factors. Not just could I deal with having a kid with HED (I could) but is it ethical to even reproduce biologically knowing that I have a chance of passing on this disorder?

I went to a support group for people with HED and parents with kids who have it, and asked about people's experiences, and got a variety of responses. Several people with HED themselves basically said it was unconscionable to have kids if you knew you could pass it on. It's a terrible disease, both in terms of the physical discomforts and the social stigma from looking very different (see http://nfed.org/ for what I'm talking about) and they would never want to put someone else through what they've been through.

Other people, both people with HED and carrier parents with HED kids, said (basically) "hey, everyone's got a cross to bear and this is no different. We knew we could/would have kids with HED and we did it anyhow because they can have totally fulfilling, if difficult, lives and society should accept people with disabilities. Shame on you for being so bitter, you people with HED who wouldn't pass it on. Sorry you're unhappy but you just have to rise above your circumstances and be glad you're here! Our kids are a blessing!"

I have to say, I'm kind of on the side of the folks who say it's really not fair to have a kid knowing they're going to have a serious disability. Like, if it was cystic fibrosis or something truly debilitating and life-threatening, it wouldn't be a question for me. Why bring someone into the world just to suffer? But is it okay if they're just going to suffer some (some would argue with that assessment - it's not an insignificant disease, and it carries real health problems with it), but otherwise live a fairly normal life?

I want to ask an ethicist, mostly out of intellectual curiosity and my own personal desire for black and white answers. But what do y'all think?

I won't even get into my own rather esoteric metaphysical beliefs about every spirit choosing their own experience on earth as a human being, and therefore you can't really "inflict" anything on anyone. Let's just assume for the moment that that's not true, and suffering is always something to be avoided, not a crucible to help reveal one's true self. Actually, I just did get into my own rather esoteric beliefs. Never mind. I'm still curious.

06-15-2007, 11:55 AM	#1 (permalink)
lurkette My future is coming on Moderator Emeritus Location: east of the sun and west of the moon	is there a medical ethicist in the house? passing on genetic disorders As many of you know, my brother had a genetic disorder of which I am almost certainly a carrier. It's called hipohydrotic ectodermal dysplasia (HED). http://en.wikipedia.org/wiki/Hypohid...rmal_dysplasia. The manifestations are a lack of sweat glands, inability to regulate body temperature, very dry skin, sparse hair and teeth (he had dentures all his life; I still have half a dozen baby teeth), and a propensity to respiratory infections (asthma, pneumonia, bronchitis) and autoimmune disorders (allergies, canker sores, etc.). It's x-linked recessive, so assuming I'm a carrier and there's no test (there isn't) to see if the fetus has it, there's a 1 in 4 chance I could have a boy with HED. Here's the punnet square equivalent for those of you who are prone to argue semantics and probability. Let's assume I'm a carrier, with the big X representing the affected x chromosome from my mom: xx girl, not a carrier xy, boy without HED Xx girl carrier Xy, boy with HED There are 4 possible outcomes, with one of them being having a little boy with the disease. So here's the deal. As I struggle with whether I want kids or not, this is one of the factors. Not just could I deal with having a kid with HED (I could) but is it ethical to even reproduce biologically knowing that I have a chance of passing on this disorder? I went to a support group for people with HED and parents with kids who have it, and asked about people's experiences, and got a variety of responses. Several people with HED themselves basically said it was unconscionable to have kids if you knew you could pass it on. It's a terrible disease, both in terms of the physical discomforts and the social stigma from looking very different (see http://nfed.org/ for what I'm talking about) and they would never want to put someone else through what they've been through. Other people, both people with HED and carrier parents with HED kids, said (basically) "hey, everyone's got a cross to bear and this is no different. We knew we could/would have kids with HED and we did it anyhow because they can have totally fulfilling, if difficult, lives and society should accept people with disabilities. Shame on you for being so bitter, you people with HED who wouldn't pass it on. Sorry you're unhappy but you just have to rise above your circumstances and be glad you're here! Our kids are a blessing!" I have to say, I'm kind of on the side of the folks who say it's really not fair to have a kid knowing they're going to have a serious disability. Like, if it was cystic fibrosis or something truly debilitating and life-threatening, it wouldn't be a question for me. Why bring someone into the world just to suffer? But is it okay if they're just going to suffer some (some would argue with that assessment - it's not an insignificant disease, and it carries real health problems with it), but otherwise live a fairly normal life? I want to ask an ethicist, mostly out of intellectual curiosity and my own personal desire for black and white answers. But what do y'all think? I won't even get into my own rather esoteric metaphysical beliefs about every spirit choosing their own experience on earth as a human being, and therefore you can't really "inflict" anything on anyone. Let's just assume for the moment that that's not true, and suffering is always something to be avoided, not a crucible to help reveal one's true self. Actually, I just did get into my own rather esoteric beliefs. Never mind. I'm still curious. __________________ "If ten million people believe a foolish thing, it is still a foolish thing." - Anatole France Last edited by lurkette; 06-16-2007 at 05:14 AM..