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Old 06-15-2007, 11:55 AM   #1 (permalink)
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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.
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Last edited by lurkette; 06-16-2007 at 05:14 AM..
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Old 06-15-2007, 12:38 PM   #2 (permalink)
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To be perfectly frank - I personally would not wish to have this disease.

To chance giving someone a debilitating disease is not something I personally could do, I would want my children to has every advantage I had.


But to dissect the statements of the two groups of people:

Those who are in favor of having children have an argument that seems very self centered. They admit that the childs life will be more difficult, and have the mentality of thinking 'Well, that sucks, but just deal with it. If you don't like the idea that I'm risking giving my kids disabilities then you're not accepting of disabled people.' Thinking someone bitter for not wanting to pass on a disease is silly, at best, to me.

Those against proliferation seem more sensible to me. They truely seem to care about the child's possiblity of disease more than anything else.

Now you only have a 12.5% chance of passing on this disease to your child.
(This is because your father doesn't have it, counting out your first X chromesone. Your mother has Xx, making you 50/50 on being a carrier. This 1/4 chance is coupled with a 0/4 chance, etc..)

1/8 is a relitively low chance. I wouldn't take it myself. If you really want to have a child of your own, you would be gambling with their life, not yours.

Personally, I would adopt a child instead of having one.

Last edited by The Faba; 06-15-2007 at 12:47 PM..
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Old 06-15-2007, 12:41 PM   #3 (permalink)
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I think that you need to look to people who have the illness, including (but not restricted) to your brother. If they have pretty well good lives and are feeling OK about themselves, then maybe that's your answer. If they sit there and tell you "I wish I'd never been born" that sounds like an asnwer too.
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Old 06-15-2007, 12:50 PM   #4 (permalink)
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There are so many unexpecteds with having children, PERIOD.

Take my brother--from birth, he's had various problems. He had pyloric stenosis that required surgery at 2 weeks of age. He was born with jaundice because of the medications they had to put my mother on for her emergency c-section. He was diagnosed with a serious form of skin cancer at 4 (they reversed the diagnosis at age 6 and still can't figure out what the lesions on his skin are, but they know they're not cancerous), had his tonsils out at 5, had the skin lesions zapped at 5, had a ganglion tumor removed at 10, and has been diagnosed with clinical depression since he was 12, and ADHD since he was 14. THEN, to put the icing on the cake, he was diagnosed with a brain tumor at 14, and had it removed at 15 via major brain surgery. Side effects of the tumor included grand mal seizures. My brother claims repeatedly that he wishes he had never been born (mostly when he's being overdramatic and having a meltdown).

Additionally, due to his depression and the brain tumor episode, my brother is extremely anti-social and immature. He has fallen behind in school and almost didn't graduate high school. He acts as if he were 12 when he is 22.

By comparison, I've only ever had one major health crisis, have mild clinical depression, and am graduating college in the fall.

So you never know what you're going to get, regardless of what you know. Each child is a unique combination of their parents, and you don't know until they're grown just how that combination will work itself out.
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Old 06-15-2007, 01:08 PM   #5 (permalink)
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One option (legal in the UK, but I'm not sure in the US) would be to use IVF to be certain of having a girl.

You could also (depending on your own morality surrounding therapeutic terminations) conceive naturally and terminate any male embryo.

I realise that these options may seem like eugenics, and they have a morality of their own to cosider, but they would give you the option of raising a child that cannot have the disease herself and only has a 25% chance of being a carrier (needing your mother to have givn you a Xx genotype and you to have given your daughter an Xx phenotype).

At the very worst, this daughter would harbour a 1/16 chance of having a son with HED, or a 1/8 chance of having a daughter Xx, and at best in 16 year's time (or so) when she's ready to breed, there may be a reliable test or even therapy.

It's a shitty choice, but there are ways to make it better I guess.

One personal observation - you have posted sevral times that you are not sure about wanting to have kids - I'd vnture to suggest that you DO want them, but are frightened of the consequences - and I totally respect that. Where there more people as concerned for their potential ofspring as you clearly are the world would undoubtedly be a better place.
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Old 06-15-2007, 01:33 PM   #6 (permalink)
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please go here:

Quote:
t was a great shock to me to discover that I had motor neurone disease. I had never been very well co-ordinated physically as a child. I was not good at ball games, and my handwriting was the despair of my teachers. Maybe for this reason, I didn't care much for sport or physical activities. But things seemed to change when I went to Oxford, at the age of 17. I took up coxing and rowing. I was not Boat Race standard, but I got by at the level of inter-College competition.
http://www.hawking.org.uk/home/hindex.html


I can only thank his parents he was born.
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Old 06-15-2007, 02:11 PM   #7 (permalink)
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I have to echo what snowy said - no one is ever given a guarantee of what they will encounter in life. I speak from experience, as I was a 150% healthy baby until i had spinal meningitis, which rendered me irrepairably severely deaf, and has a host of other long term side effects.

There are some who feel bringing ANY child into the world nowadays is subjecting them to unneccessary suffering.
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Old 06-15-2007, 02:31 PM   #8 (permalink)
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onesnowyowl has an extremely good point. It is so hard to predict what sort of health problems your child will have until you give birth to him/her. Beethoven was one of seven children born to his mother and only two of his brothers were healthier in childhood. The others died very early.

But my personal opinion is that since you already have the knowledge of this extra possibility, I would not want to give birth to my own child if I were in your shoes. At the very least, I think I would have trouble dealing emotionally. An alternative is maybe adopting a child.
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Old 06-15-2007, 05:03 PM   #9 (permalink)
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I understand that there are no guarantees of health, even without genetic issues of which you are already aware. And I know there are ways to get around this particular reproductive issue for myself (IVF, adoption, etc.) but that's not really my question.

My question is if you ARE well aware that there is a significant risk of passing on a serious illness, is it ethical to reproduce biologically?
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Old 06-15-2007, 07:16 PM   #10 (permalink)
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Yes it is ethical; no, it is not an easy choice. I don't think it's a matter of ethics so much as it's a matter of being comfortable explaining to your child the situation and being comfortable dealing with its complications. If you can be comfortable rolling the dice on the possible condition of your child, I think you don't need to be worried about the ethics.

My unsolicited opinion is that the bigger issue is you being able to not feel guilty if you end up with a child with this disorder or with a child capable of passing it on. You know it's going to be difficult, and I don't think it would be fair to yourself or to your child to spend his life agonizing about the decision. If you decide to have a child, go with it and take it for all the good and the bad and don't beat yourself up over something that you had very minimal control over.
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Old 06-15-2007, 10:15 PM   #11 (permalink)
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There will always be three major camps on this:

1. Just have a kid.
2. IVF to get a girl, who at worst will carry the gene
3. Don't reproduce.

I point this out specifically to illustrate that what is considered "ethical" is quite different from one person to the next, even at the doctor level of medicine.

You'll always have those "doing anything other than natural birth is screwing with the order of things" people, those "just IVF it to ensure a girl", and those "spare the child the possibility".

In my opinion, if you must have a child, I would suggest one of the following two options:

1. IVF to ensure a girl, so you can still have a child that is your own.
2. Adopt.

There are tons of kids who need good homes.

Some diseases are degenerative in nature and can be fought against with the right amount of determination- those are mostly muscular/connective tissue/nerve disorders, like Stephen Hawking had.

There is no amount of determination or fortitude that can cause you to reverse a lack of sweat glands, the inability to regulate body temperature, have very dry skin, sparse hair and teeth and a propensity to respiratory infections. It doesn't work that way.

Also take with a grain of salt any time a parent of a child with a disability says the kid is a blessing and calls you bitter for not wanting to pass it on. That is selfish. It's flat-out selfish. Not wanting to pass on a horrible, terrible disease is hardly being bitter, it's being conscious about what pain and discomfort you would bring upon a child simply because you demanded to have a child.

IVF for a girl, or adopt. Don't chance bringing that much pain and suffering onto your child. Demanding a baby, regardless of the risk of terrible quality of life for them, is selfish (I'm not saying that's your stance, i'm commenting on the other parents to which you've referred).
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Old 06-15-2007, 11:13 PM   #12 (permalink)
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Quote:
Originally Posted by The Faba
Those who are in favor of having children have an argument that seems very self centered. They admit that the childs life will be more difficult, and have the mentality of thinking 'Well, that sucks, but just deal with it. If you don't like the idea that I'm risking giving my kids disabilities then you're not accepting of disabled people.' Thinking someone bitter for not wanting to pass on a disease is silly, at best, to me.
Having a child is in itself a selfish act. You don't bring a child into this world for his or her own benefit. How can you make a decision for the benefit of someone who doesn't exist? You do it because you want to have a child and raise a family.

And really, that's what it comes down to. You're trying to approach this issue logically when logic has nothing to do with it. This is an emotional decision to make and what it comes down to is that you have to weigh your desire to have a child against your fear of the child being born with HED. The shitty part about all this is that if you decide to do it and the child does have the condition, you're going to regret it; but if you don't do it, you're going to regret it too. You're always going to wonder what might've been. The only possible outcome that will leave you emotionally in the clear will be to have a child who doesn't have the condition. Since you've already stated that you're against the alternatives (adoption, IVF, selective abortion), that would mean taking the risk.

I'm not going to sit here and make a list of reasons for and against having a child. For one, it'd take more time than I care to commit to this and besides that it's really something that you're perfectly capable of doing for yourself. What I am going to suggest is that you need some perspective on this illness. It's the focal point of your decision-making right now and you have to deal with that, one way or the other.

I stated my opinion in this thread, but will state it again. Knowing that you are most likely a carrier, you and ratbastid both need to be 100% certain that if you have a child with HED, you can cope with it. Basically, take a moment and, as an exercise, assume the worst. Assume that your child will have this disease and then do some soul searching. Don't try to rationalize or weigh pros and cons, because this isn't a rational decision. Just really ask yourself if you still want a child and then listen to the answer, without the need for justification. If you decide yes, then you can proceed with an optimistic outlook, knowing that the odds are in your favour and that even if the child does end up with HED you can deal with it.

Also, this is really something you and your husband need to discuss. This is not a decision that's made by committee, because nobody here will be raising the child (affected or not). You two together need to be okay with this, one way or the other.

I'll leave you with one final point to ponder. I never did have the pleasure of knowing your brother, but from what you've said of him I gather that he enjoyed his life. If he were to weigh in on the issue, what do you think he'd say?
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Old 06-16-2007, 01:30 AM   #13 (permalink)
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I would go with the opinions of others in regard to IVF, if chosing the sex to avoid that type of illness is possible. To be crude, by informing your descendants of the illness and how to avoid it, it is entirely possible to effectivly breed it out your bloodline over a few generations. But by that time i'm sure they will have developed a test for it.


My own personal beliefs are that a child is brought into the world as a child. If you found a way to have your firstborn without the condition, over a firstborn with the condition, then your kid is still going to be your kid, you have brought the life into the world, but given it a far better go at things. That person is still that life, and i am sure they will be happy not having the condition over having it.

You could adopt.
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Old 06-16-2007, 09:54 AM   #14 (permalink)
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Many families are genetically prone to pass on something, even though the disease may not manifest itself at birth. In my stepmother's family, it's a rare, aggressive form of breast cancer. My mother's family has mental illness, my dad's family has macular degeneration and auto-immune disorders. Should none of my family have reproduced in order to not pass these diseases on? In my opinion, no. It's the luck of the draw. If everyone without perfect genetics chose not to have children, the human race as we know it would most likely die out.
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Old 06-16-2007, 06:51 PM   #15 (permalink)
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I believe that perhaps you are over thinking this all and making it more difficult on yourself?When I decided that I wanted a child, I wanted a child. That meant any child that we created. There were chances that the child could have something wrong, and I was offered tests to see if this was the case. I declined all such tests. Tests would not help me because the results would not matter. The choice you have to make is to decide if the results of you creating a child matter. The child will love you and you will love the child no matter what happens.
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Old 06-16-2007, 07:45 PM   #16 (permalink)
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Quote:
Originally Posted by *Nikki*
I believe that perhaps you are over thinking this all and making it more difficult on yourself?When I decided that I wanted a child, I wanted a child. That meant any child that we created.
Well, if those are your criteria, then I'm staying childless, apparently. The problem is that sometimes I want a child, and sometimes I don't. There is no such clarity for me on this issue. I don't think I'm overthinking it. It's not insignificant to knowingly pass on a genetic disorder that is going to mean a lifetime of medical problems and complications and discomfort. And if more people thought about having kids before they actually did it, I think the world would probably be a happier place.

Quote:
There were chances that the child could have something wrong, and I was offered tests to see if this was the case. I declined all such tests. Tests would not help me because the results would not matter.
Um...not to be offensive, but that's just kind of dumb. I don't think it could hurt to know that you were going to have a fetus with spina bifida or anencephaly or some such essentially fatal disease. I know there are people who just want a child, any child, and it's the process that matters to them. But I guess I'm not one of those people.
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Old 06-17-2007, 04:28 AM   #17 (permalink)
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I too declined all the tests, I did NOT want to spend my pregnancy worrying myself sick over negative results, there are far too many other things a pregnant woman worries about, and I knew if I had a child with problems my mental health was best served not having stewed about it for months and months. If you call that dumb...well then thats just the difference between you and women like Nikki and me.
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Old 06-17-2007, 07:51 AM   #18 (permalink)
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Well, I think lurkette was commenting on the extreme. It is just two different ways of thinking. Maybe she feels that those tests can give her peace of mind? Whereas for Nikki and ShaniFaye, it is better peace of mind without knowing.

I still have no change of opinion with my previous reply here. If there is that extra possibility, and because it is genetic and higher risk, I would say not have a baby.
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Old 06-17-2007, 10:31 AM   #19 (permalink)
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Quote:
Originally Posted by lurkette
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.
I wouldn't be so sure about this. There was a radio program on about stem cells and the like, and one thing they were discussing was genetic testing of embryos. They were talking about how when an embryo is only 8 or 16 cells, they can remove one of those cells for the purpose of genetic testing. A healthy embryo could then be selected and implanted. At the time of the show it was unclear whether this could have any effect on the development of the fetus, so it may may not be available just yet. Something to look into, though.

Of course, this also depends on your personal stance on abortion. Embryos with the disorder would likely be destroyed.

Edit: Don't forget, there's always adoption.

Last edited by Pesto; 06-17-2007 at 10:38 AM..
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Old 06-17-2007, 10:55 AM   #20 (permalink)
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No way in hell would I have the kid. I get cold sores about twice a year and during each outbreak I feel suicidal. Everyone in my family gets cold sores regularly. I will be forever frustrated with my relatives for kissing me when I was young and passing the virus on to me, especially since everyone in my family shows the symptoms on a somewhat regular basis.

That said, I could not imagine having so much permanently wrong with my skin, hair, eyes, teeth and nails. I think looks are very important and one should be able to take pride in their physical appearance. I don't think it would be much fun having a child that is deformed and quite possibly eternally depressed about his existence.
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