genetic illnesses

Whispered

I was watching a programme last night featuring a young woman, her fiance and their baby. The couple were 19, the baby only a few weeks old. The woman has a disease which stops her bones from growing in a normal way, while her muscular make up is the same as an average woman, just all bunched in against this tiny skeleton. She was about 840mm high.

Despite being warned by doctors not to, she got pregnant. Her pregnancy was difficult and she had to be induced at 34 weeks. The baby was born with a cleft pallette (sp?) and spent the first few weeks of her life in an incubator. Because of the cleft pallatte, she often needs to have milk syringed out of her nose to allow her to breathe and until an operation needs to have the father there 24/7 as the mother can't physically do anything should the baby start to choke in her care.

It turns out that the baby has the same disorder as her mother and will only grow to the same height. She will have the same health problems and mobility problems. When the mother found out, she was distraught. They didn't show this on camera, but her fiance confirmed. Her life is so hard that it broke her heart to think of her little girl going through the same thing.

They then decided that because the baby was not going to die (a very real possibility) they wanted another one. My initial reaction was one of "oh fair play to them...." then it dawned on me. The chances of them having a baby which will not live through birth are much higher than usual. Should the baby live through birth, the chances of it having a very difficult life are huge too. It got me thinking. If I was told in the morning that I had an illness that could easily be passed onto potential kids, that this illness would seriously effect their life and their chance of a normal life, would I consider ever having kids. I really don't know. I understand this could potentially be a difficult issue for some people, and I'm not saying that people with genetic illnesses should not have kids. I'm interested in opinions.
I think it's important to point out that this question is coming from someone who has no desire for children anyway so I don't understand the strength of the desire to have kids some people obviously have. Is it cruel to put a child through a life which you would not want for yourself?


(I'm also aware that 2 completly healthy people can have a child with a genetic illness before anyone reminds me )

jellie

my instinct is to say its cruel and selfish.

it depends on the risk. every pregnancy would have a certain amount of risk, but with the couple you mention it seems that the baby will not be "normal", if it survives at all?

The_Minister

I remember saying this about someone with cystic fibrosis - got the head bit off me.

It is, after all, eugenics.

eviltwin

Its probably a bit misguided maybe but you can't underestimate the desire people have to have a child

I've been blessed with two children and luckily didnt have to worry about passing anything on to them but why limit the argument to people with genetic disorders?

I was only a teenager when I had my first, I had no money, didnt live with my boyfriend...I'm sure some people probably thought it was unfair on her and I was selfish to keep the child when someone else could have given her a lot more but I still did it.

You can probably look at everyone and see something that should "prevent" them having kids be it their age, health, finances etc

Basically I dont think anyone should really judge is what I'm saying although in the case the OP mentions ( which is an extreme lets be honest ) I dont see how they can put themselves let alone a child through that

Whispered

My reaction on thinking about it was that it was selfish too. But again, I have no desire to have kids so I suppose my opinion on it is not worth a lot as I don't have the desire for children some people have.

MissFlitworth, your situation sounds very difficult.

The Minister, I'm not saying anything, I don't think I'm in a position to have an opinion on it until/unless I decide I want to have kids. I'm curious as to what other people think. I'm not talking about eugenics or "selective breeding" either. I'm not saying "for the good of mankind" or "for the future of the species" I'm asking from a purely parental point of view. For the good of your own child. To suggest I'm implying otherwise is unfair.

Eviltwin, I know what you are saying, but I am not talking about families with very little money, (in which case I wouldn't be here) or single parent families, or indeed anything but a disorder which could potentially leave your child helpless and with a very difficult life ahead of them. I suppose there are a lot of grey areas. And you are 100% right in that I shouldn't underestimate the desire to have kids.

CathyMoran

You can and should not stop someone having children...where do you draw the line, would you insist that only those with blonde hair and blue eyes have kids? Am frankly shocked by the thread, I thought that eugenics was not that popular, obviously I was wrong. Most people have some serious medical conditions and we will all die at some stage.

Some of the most famous scientists and literature figures had medical conditions.

Whispered

I knew someone would come along and be insulted. I can see why if you wish to take what I said in a certain way. I apologise if you are insulted and shocked Cathy but I would like to point a few things out. Firstly I specifically said that I am not speaking about eugenics. This, as I understand it is to do with selective breeding.

Your comment about blonde hair and blue eyes is a bit of an overreaction as I said a few times that the woman in question was very ill and could not physicially care for her child and never would be able to. That has absolutely nothing to do with how the child or parents look. As for the line that I cannot stop people having children. I did not make such a statement, nor do I think anything along those lines so I would thank you to stop putting words into my mouth and twisting what I say. The question I am asking is, if like me, would you think it harder to come to the decision to have a child if you know that chances are pretty high that they would never have a normal life.

I also pointed out a few times that I myself don't know how I would feel about it. That I would have to think about it. That is why I am asking the question.

In planned pregnancies you would factor in a lot of things. Would health not be one of them?

I would have never thought about it before until I saw that programme. The difficulties that woman had doing anything. The relief when the baby was born alive, the upset when she discovered that the baby indeed had the same illness as her. I just can't understand why she would put herself or a potential baby through it again. But as I said, I don't want children so I wouldn't understand.

As I said in my first post I really don't know.

I understand this could potentially be a difficult issue for some people, and I'm not saying that people with genetic illnesses should not have kids. I'm interested in opinions.
I think it's important to point out that this question is coming from someone who has no desire for children anyway so I don't understand the strength of the desire to have kids some people obviously have.

I am not speaking about people in general. I am certainly not saying that it is wrong to have children if you have an illness. And again, I apologise if it comes across that way.

CathyMoran

I appologise if you feel that I was picking on you, my comments were general.

As a child I was always told by my parents that I should never have children just because I am a type 1 diabetic and when I got together with my husband who has crohns both sides were upset. We both live with these conditions and while they are not pleasant we both have a good lives. We both decided to have a child and am pregnant at the moment - yes the baby was planned so that it was given every chance of survival and we adore our unborn son.

Whispered

CathyMoran wrote: »

I appologise if you feel that I was picking on you, my comments were general.

As a child I was always told by my parents that I should never have children just because I am a type 1 diabetic and when I got together with my husband who has crohns both sides were upset. We both live with these conditions and while they are not pleasant we both have a good lives. We both decided to have a child and am pregnant at the moment - yes the baby was planned so that it was given every chance of survival and we adore our unborn son.

I'm not great at putting things so it probably does come across as very cold. It's not what I mean though.

I have diabetes and crohns in my family actually. Coincidence. And both illnesses are on each side of my family. I'm lucky (or have been so far). I'm really not speaking about those sort of illnesses. I should have made that clearer. I am speaking only about the type of sickness which will make your childs life unmanagable. Where you know that your child will have a slim chance of surviving birth and a slim chance of a healthy, good, life.

Meant to say, I know you're pregnant and I know it was difficult for you. I've often thought that you are at times inspirational. (I really hope I'm thinking about the right poster here).

Jules

I think selfish is a bit of a strong worng. The biological urge to have child is very strong, but i would like to think that if i was told that were i to fall preganant and the child had a high chance of having a genetic illness be it physical or mental i wouldnt do it.

The_Conductor

helena.ryan wrote: »

If I was told in the morning that I had an illness that could easily be passed onto potential kids, that this illness would seriously effect their life and their chance of a normal life, would I consider ever having kids.

Where do you draw the line? In Ireland we have the highest incidence of Cystic Fibrosis in the world, shocking levels of genetic cardiac disease along with a myriad of other genetic disorders that very often people are wholly unaware of. Someone with a relatively innocuous autoimmune disease- could have a child with a related autoimmune condition that manifests in a wholly different way.

I understand what you're saying- if you have gone through hell yourself- would you wish this on a child? Of course not.

The programme was a very extreme example of a genetic abnormality that unfortunately was passed to a child. If someone were to suggest that someone else with a different disease not have children- lest the child inherit that condition- regardless of how you phrase it- you are playing god.

Eugenics focuses on two distinct areas- reducing the number of genetic congenital disorders in the population- and increasing the IQ of the population. You could argue that the only reason these twin aims aren't viewed as a modern ideal is solely because of how they were twisted by Nazi Germany and Sweden into notions of racial superiority and purity. This however ignores what is a primal urge on the part of many people to have children of their own- regardless of whether they have red hair and freckles, or would get lost on their way to the local spelling bee.......

The fact of the matter is- variety really is the spice of life. It is how we differ from each other that (both physically but also intellectually) that often is what drives people together. I am sad when I see a child in pain- I was often in pain when I was a child and can relate, but do I imagine that the child would be better off not having had the chance to experience life- certainly not. Even if the child of the woman in the programme is going to have a hard life- there have been and continue to be advancements in treatment (including pain management) the whole time- and conditions that might once have been considered debilitating and would have consigned the person to a care home- can now be managed, and in some very high profile cases- the person can excel in whatever their chosen field might be (think of Stephen Hawkings for example).

I do think that people should be better educated about what possibly lies ahead for them- genetic profiling is now widely available, its often actively avoided though as people fear being unable to get health insurance, mortgage protection etc (I can't qualify for payment protection on my mortgage or any loans on medical grounds- for example- however I'm unlikely to die- so they're more than happy to sell me death benefits- if the wife ever wants the mortgage paid off- shes going to have to find a high window to chuck me out..........)

People are actively discriminated against- on the basis of perceived genetic imperfections. Should they be allowed procreate? Why not? An ideal world might have a highly intelligent population of athletic men and women who never get ill- and possibly live considerably longer than we could ever imagine. Is this a rational choice though? Perhaps genetic abnormalities would be managed by deciding who could procreate with who, perhaps by licence, and by god, we'd really be into big brother territory then.......

I can feel sad when I see a child in pain in a wheelchair, and wonder what sort of life that child will have. Perhaps he or she might be the next budding Stephen Hawkings- who knows.

The Big Red Button

CathyMoran wrote: »

I appologise if you feel that I was picking on you, my comments were general.

As a child I was always told by my parents that I should never have children just because I am a type 1 diabetic and when I got together with my husband who has crohns both sides were upset. We both live with these conditions and while they are not pleasant we both have a good lives. We both decided to have a child and am pregnant at the moment - yes the baby was planned so that it was given every chance of survival and we adore our unborn son.

But, to be fair, those are both conditions which, while very serious, many sufferers can still enjoy a good life expectancy and a high quality of life. Completely different to the case given by the OP.

Personally, if I was told that there was a good chance that my child would be born with a condition which would cause them a lot of pain and suffering and a crap quality of life, I don't think I could do it. I don't think I could put my child or for that matter myself through it.

By the way, what I mean is that I wouldn't get pregnant in the first place. If I was told that when I was already pregnant - completely different argument.

But that's just me. The OP was not suggesting that some new legislation be brought in preventing people from getting pregnant in certain cases - apart from else, that would be impossible to implement on several levels.

So yeah, if I was in that woman's position, having suffered the problems that she suffered, I don't think I could justify bringing a child into the world knowing that there was a high likelihood that they'd have the same problems.

Wooder79

It's a very interesting one, and full of grey areas. Rationally, very few people could argue that it's a good idea for someone with an extremely debilitating condition to have a baby if there's a good chance the child will have the same condition.

Having said that, speaking as a mother, there is very little rationality to be honest in the desire to have a child. And generally speaking, if you have that desire, then it tends to be very strong.

I suppose it comes down to perception (how difficult the person with the condition thinks it makes their life and what Quality of life they feel they have, bearing in mind that there's a good chance that they haven't experienced life without the condition, though obviously this is not always the case as many genetic conditions can be asymptomatic for a long time)

It is a very emotive subject and there are many perspectives to it. For example, and a slightly different slant, my sister had two children even though rationally she knew that she would probably not be around to see them grow up. (congenital heart deformation, not genetic. Kids (ages 11 and 6) are perfectly healthy) And she also knew that each pregnancy was particularly dangerous for her. It was a difficult decision for her, but she had them nonetheless. And when she passed away in September aged only 35 we were very grateful to her for that, because we would have nothing left of her otherwise.

It's an issue that will only increase in importance as medicine continues to improve, as there will be more and more people who will be able to live fuller lives and reproduce with conditions which would have prevented them even reaching child bearing age in previous generations.

Whispered

Brilliant post. Thank you.

You touched on suggesting people not have children. Please believe me that this is not what I am suggesting. I am asking if personally you would do it. Or if I would do it. Or how would your mind or my mind work if you were to be faced with such a difficult choice.

People can have opinions on the world in general. Then, when it comes closer to home, their opinion might waver slightly. So my general world opinion is yes in an ideal world, if you want a child, you have one, no matter what. Personally though, I don't know whow I would feel if I was in that womans situation.

smccarrick wrote: »

Where do you draw the line? In Ireland we have the highest incidence of Cystic Fibrosis in the world, shocking levels of genetic cardiac disease along with a myriad of other genetic disorders that very often people are wholly unaware of. Someone with a relatively innocuous autoimmune disease- could have a child with a related autoimmune condition that manifests in a wholly different way.

I understand what you're saying- if you have gone through hell yourself- would you wish this on a child? Of course not.

The programme was a very extreme example of a genetic abnormality that unfortunately was passed to a child. If someone were to suggest that someone else with a different disease not have children- lest the child inherit that condition- regardless of how you phrase it- you are playing god.

Eugenics focuses on two distinct areas- reducing the number of genetic congenital disorders in the population- and increasing the IQ of the population. You could argue that the only reason these twin aims aren't viewed as a modern ideal is solely because of how they were twisted by Nazi Germany and Sweden into notions of racial superiority and purity. This however ignores what is a primal urge on the part of many people to have children of their own- regardless of whether they have red hair and freckles, or would get lost on their way to the local spelling bee.......

The fact of the matter is- variety really is the spice of life. It is how we differ from each other that (both physically but also intellectually) that often is what drives people together. I am sad when I see a child in pain- I was often in pain when I was a child and can relate, but do I imagine that the child would be better off not having had the chance to experience life- certainly not. Even if the child of the woman in the programme is going to have a hard life- there have been and continue to be advancements in treatment (including pain management) the whole time- and conditions that might once have been considered debilitating and would have consigned the person to a care home- can now be managed, and in some very high profile cases- the person can excel in whatever their chosen field might be (think of Stephen Hawkings for example).

I do think that people should be better educated about what possibly lies ahead for them- genetic profiling is now widely available, its often actively avoided though as people fear being unable to get health insurance, mortgage protection etc (I can't qualify for payment protection on my mortgage or any loans on medical grounds- for example- however I'm unlikely to die- so they're more than happy to sell me death benefits- if the wife ever wants the mortgage paid off- shes going to have to find a high window to chuck me out..........)

People are actively discriminated against- on the basis of perceived genetic imperfections. Should they be allowed procreate? Why not? An ideal world might have a highly intelligent population of athletic men and women who never get ill- and possibly live considerably longer than we could ever imagine. Is this a rational choice though? Perhaps genetic abnormalities would be managed by deciding who could procreate with who, perhaps by licence, and by god, we'd really be into big brother territory then.......

I can feel sad when I see a child in pain in a wheelchair, and wonder what sort of life that child will have. Perhaps he or she might be the next budding Stephen Hawkings- who knows.

Wooder79

I know what you're saying, we all have ideas of how we would like to think we would react in different situations. But, I think that's one of those situations where you couldn't really tell how you would respond unless you were actually faced with it. I've often wondered if I would have made the same choice to have a baby if I had been in my sister shoes. I would like to think I would have been able to be as brave as her, but I honestly don't know.

Whispered

Your sister was obviously very brave and I'm sorry to hear about her death. I hope her kids are a comfort to you and you to them.

Wooder79

Thanks Helena. She was some woman for one woman alright! I wish I had even half of her guts. The kids keep us all going, having them makes it feel like a part of her is still with us.

The_Conductor

Wooder79 wrote: »

I know what you're saying, we all have ideas of how we would like to think we would react in different situations. But, I think that's one of those situations where you couldn't really tell how you would respond unless you were actually faced with it. I've often wondered if I would have made the same choice to have a baby if I had been in my sister shoes. I would like to think I would have been able to be as brave as her, but I honestly don't know.

Very often people cannot really offer an honest opinion- even to themselves, until they are forced into situations that make them reassess their priorities, and confront the ideas and ideals that they think they believe in. Its very hard to put yourself in someone else's shoes, and imagine how you would react- until you have to cross those bridges yourself. We are honoured when we meet people in life who have cheerfully made very very difficult decisions, and in their doing, have educated those around them in ways not otherwise possible. Bravery does not have to be very visible displays or acts of valour- sometimes the little things in life and how a person overcomes them- can be far braver than those one-off acts by strangers.

CathyMoran

Hmm, I know you Wooder79, must sent you a text! Hugs! Your sister was a wonderful lady and very beautiful, just like you!

Wooder79

You're both sweeties Mr & Mrs mccarrick. Hope you're doing good Cathy and taking it easy, looking forward to meeting your little man.

palaver

Being probably a bit contrary here.

Helena, I was the first reader of your post, really, and thought about it ever since.

I think that the general urge to have children is basically selfish. Ok, it's what everything alive is genetically supposed to do and that's fine.

But, and a big but is, that there is no generic necessity to procreate for human beings. There are enough of us as it is. So the wish for having children might be really obsolete, looking at the big picture.

But the question was, if a woman knows that she is not quite capable to look after children and knows that her children, if they ever survive, will suffer, I would say no, she shouldn't get pregnant.
Has nothing to do with eugenics, which means someone else decides if you are capable to get children or not. It is a question of your own responsibility and how much you care about your own kids.

We all have some risk of transferring some undesirable genes or genetic illnesses. It's always a gamble. That's evolution.

But getting pregnant knowing before conception that they certainly will have children who will suffer all their lives and that they can't look after them properly because of their own illness is absolutely selfish.
That's why human beings got the brains to know what they are doing - well in the best of worlds anyway. Otherwise they are nothing else but animals.

I decided early enough not to have children after my mother died at a young age of cancer and I got the illness myself shortly after, being just in my early twenties. Even if a child of mine would not have cancer, at least I wouldn't want the child grow up as an orphan like me. I happen to be alive still, though. But that was my gamble. And I don't regret it.

To be honest, I never understood the desire and sometimes weird urge to have children, why women are desperate and making a fuss about it. Womanhood is not just about being a mother.

Cupcake_Crisis

This is a very interesting topic! Sad, but interesting!

If i found out that i was carrying a gene that would make a childs life painful and unbearable, i dont think i could do it. Watching the poor little thing struggle and suffer would destroy me and id feel so guilty. Id still always have the biological urge to have a child but i still dont think i could inflict that on a baby.

I know being only 20 and not having any kids my opinion doesnt really carry much weight, but i honestly cant see my views changing as i get older

Clare Bear

If I knew that there was a strong possibility that my child would suffer and have a painful life full of hospital visits and it was partially my fault I would feel awful. There has to be no worse torture for a parent than to see their child suffer. I feel extremley strongly about this. Yes I may want children one day but there is no way in hell I would have a child if I knew they would suffer if I could have prevented it. It's the most selfish thing anyone could do and I'm angry even thinking about it. People like that shouldn't be allowed to have children. How selfish, self absorbed and ignorant can you get? Yes I know many people have an overwhelming urge to have children but if they put that urge before the child's well being then they're not good parents. Sorry if this has offended anyone but I can't think of a more disgusting thing to do than go ahead with having children knowing they may have a life of suffering and pain. It's the most selfish decision imaginable.

The Big Red Button

Clare Bear wrote: »

If I knew that there was a strong possibility that my child would suffer and have a painful life full of hospital visits and it was partially my fault I would feel awful. There has to be no worse torture for a parent than to see their child suffer. I feel extremley strongly about this. Yes I may want children one day but there is no way in hell I would have a child if I knew they would suffer if I could have prevented it. It's the most selfish thing anyone could do and I'm angry even thinking about it. People like that shouldn't be allowed to have children. How selfish, self absorbed and ignorant can you get? Yes I know many people have an overwhelming urge to have children but if they put that urge before the child's well being then they're not good parents. Sorry if this has offended anyone but I can't think of a more disgusting thing to do than go ahead with having children knowing they may have a life of suffering and pain. It's the most selfish decision imaginable.

I pretty much totally agree with you there.

However I will stress that you do need to factor in (a) the severity and (b) the likelihood of the potential illness.

Severity - another poster mentioned that her parents didn't want her to have children in case they inherited her diabetes. Well, I think that's just crazy! I know diabetes is a serious condition, but if controlled properly, you can totally live a really happy, healthy, fulfilled life. I don't think that it would be selfish to have a child if you knew that there was a high chance of them being born with an illness like that. However, if it was an illness that would mean that they'd live in serious pain every single day and would never be able to have any level of independence - that's completely different.

Likelihood - if you were told that there was, say, a 2% chance of your child having some serious condition ... I don't necessarily think that it's selfish to go ahead and try to get pregnant. I mean, if you're having a child, even the healthiest parents can give birth to a child with any number of a wide variety of medical conditions - not to mention the conditions that the child may acquire through illness, accidents, etc as they grow older. As to where you draw the line - 2%? 10%? 20%? - well, that's a decision for the parents to make.

I know that personally, if there was any significant risk, I'd probably look at options such as adoption etc first. I would find it very hard to look at my child in pain and to know that I made that decision to bring the child into the world, knowing the risks before I got pregnant, in order to fulfil my own selfish needs.

Clare Bear

chatterpillar wrote: »

I pretty much totally agree with you there.

However I will stress that you do need to factor in (a) the severity and (b) the likelihood of the potential illness.

Severity - another poster mentioned that her parents didn't want her to have children in case they inherited her diabetes. Well, I think that's just crazy! I know diabetes is a serious condition, but if controlled properly, you can totally live a really happy, healthy, fulfilled life. I don't think that it would be selfish to have a child if you knew that there was a high chance of them being born with an illness like that. However, if it was an illness that would mean that they'd live in serious pain every single day and would never be able to have any level of independence - that's completely different.

Likelihood - if you were told that there was, say, a 2% chance of your child having some serious condition ... I don't necessarily think that it's selfish to go ahead and try to get pregnant. I mean, if you're having a child, even the healthiest parents can give birth to a child with any number of a wide variety of medical conditions - not to mention the conditions that the child may acquire through illness, accidents, etc as they grow older. As to where you draw the line - 2%? 10%? 20%? - well, that's a decision for the parents to make.

I know that personally, if there was any significant risk, I'd probably look at options such as adoption etc first. I would find it very hard to look at my child in pain and to know that I made that decision to bring the child into the world, knowing the risks before I got pregnant, in order to fulfil my own selfish needs.

I completely agree on both of those factors. To me diabetes (in general!) isn't a life threatening disease that causes terrible pain. I know plenty of people with it that live relatively normal lives. To not have a child for that reason is a bit extreme. Also the likelihood of course. I'm talking about a very strong chance that the child will be born with a very bad illness.

jellie

chatterpillar wrote: »

I pretty much totally agree with you there.

However I will stress that you do need to factor in (a) the severity and (b) the likelihood of the potential illness.

Severity - another poster mentioned that her parents didn't want her to have children in case they inherited her diabetes. Well, I think that's just crazy! I know diabetes is a serious condition, but if controlled properly, you can totally live a really happy, healthy, fulfilled life. I don't think that it would be selfish to have a child if you knew that there was a high chance of them being born with an illness like that. However, if it was an illness that would mean that they'd live in serious pain every single day and would never be able to have any level of independence - that's completely different.

Likelihood - if you were told that there was, say, a 2% chance of your child having some serious condition ... I don't necessarily think that it's selfish to go ahead and try to get pregnant. I mean, if you're having a child, even the healthiest parents can give birth to a child with any number of a wide variety of medical conditions - not to mention the conditions that the child may acquire through illness, accidents, etc as they grow older. As to where you draw the line - 2%? 10%? 20%? - well, that's a decision for the parents to make.

I know that personally, if there was any significant risk, I'd probably look at options such as adoption etc first. I would find it very hard to look at my child in pain and to know that I made that decision to bring the child into the world, knowing the risks before I got pregnant, in order to fulfil my own selfish needs.

+1 to all of this.

my original post was in response to the case the OP stated where the child would either a) not survive birth or b) be seriously disabled if they did (or so was my understanding of it anyway - correct me if im wrong).

in this case it is selfish to try for a baby - what reason could you possibly have to justify it? "but i WANT/NEED a baby" is not good enough.

obviously no 2 situations are unique, but if there was a high risk of severe medical condition known BEFORE conception, then IMO its cruel and selfish to try conceive.

The_Conductor

Clare Bear wrote: »

I completely agree on both of those factors. To me diabetes (in general!) isn't a life threatening disease that causes terrible pain. I know plenty of people with it that live relatively normal lives. To not have a child for that reason is a bit extreme. Also the likelihood of course. I'm talking about a very strong chance that the child will be born with a very bad illness.

But- how do you decide what constitutes a 'very bad illness'. What one person is totally able of taking in their stride might devastate another- a minor inconvenience for one person, is a life sentence for another. When you start to try to define what should and what should not be allowed- you ignore the resilience of people, and their means of coping with situations most people might perceive as insurmountable. Diabetes might be a life sentence for one person- and I am personally aware of diabetics whose entire existence revolves around their condition- whereas for other people its a minor thing that they just deal with. Ditto Crohn's- the pain can be on a level indescribable to most people- but somehow people live through it, and don't allow it to define themselves.

Stephen Hawkings is defined by his intellect, not by his disability.

The Big Red Button

smccarrick wrote: »

But- how do you decide what constitutes a 'very bad illness'. What one person is totally able of taking in their stride might devastate another- a minor inconvenience for one person, is a life sentence for another. When you start to try to define what should and what should not be allowed- you ignore the resilience of people, and their means of coping with situations most people might perceive as insurmountable. Diabetes might be a life sentence for one person- and I am personally aware of diabetics whose entire existence revolves around their condition- whereas for other people its a minor thing that they just deal with. Ditto Crohn's- the pain can be on a level indescribable to most people- but somehow people live through it, and don't allow it to define themselves.

Stephen Hawkings is defined by his intellect, not by his disability.

Well, where, if anywhere, would you draw the line?

The_Conductor

chatterpillar wrote: »

Well, where, if anywhere, would you draw the line?

I don't think you can define a line.
I think that every situation is unique and that it is not up to society to decree to anyone what they should or should not do. I do think that people should be properly educated as to the possible impacts of their actions- in a clear and reasoned manner, devoid of hysteria. Unfortunately hysteria is rife, and the average person walking down the street believes every little of bile journalists push on their slow news days......

I don't like to see a child in pain any more than anyone else does- but surely education is the only reasonable way to address situations like this in a civilised society? Eugenics and procreation by genetic profiling- certainly is not the way to go.

There are people out there who would subscribe to a ban on type 1 diabetics or people suffering from other autoimmune diseases, having children. This is ridiculous in the extreme in my eyes. In the case on the tv programme- the parents should be properly educated as to the possible outcomes of having children- and the statistical probabilities of each eventuality. Whether or not society should be expected to settle the tab by paying for medical intervention for their subsequent children, alongside their medical bills/social welfare etc- is a different question entirely that I do not believe we are addressing in this thread.

The Big Red Button

smccarrick wrote: »

I don't think you can define a line.
I think that every situation is unique and that it is not up to society to decree to anyone what they should or should not do. I do think that people should be properly educated as to the possible impacts of their actions- in a clear and reasoned manner, devoid of hysteria. Unfortunately hysteria is rife, and the average person walking down the street believes every little of bile journalists push on their slow news days......

I don't like to see a child in pain any more than anyone else does- but surely education is the only reasonable way to address situations like this in a civilised society? Eugenics and procreation by genetic profiling- certainly is not the way to go.

There are people out there who would subscribe to a ban on type 1 diabetics or people suffering from other autoimmune diseases, having children. This is ridiculous in the extreme in my eyes. In the case on the tv programme- the parents should be properly educated as to the possible outcomes of having children- and the statistical probabilities of each eventuality. Whether or not society should be expected to settle the tab by paying for medical intervention for their subsequent children, alongside their medical bills/social welfare etc- is a different question entirely that I do not believe we are addressing in this thread.

But in my opinion this thread is not addressing whether we should implement some law about parents with certain medical conditions not being allowed to have kids. That's a completely different issue!

It's about the individual's choice in those circumstances, as opposed to society's stance on the matter.

Clare Bear

smccarrick wrote: »

I don't think you can define a line.
I think that every situation is unique and that it is not up to society to decree to anyone what they should or should not do. I do think that people should be properly educated as to the possible impacts of their actions- in a clear and reasoned manner, devoid of hysteria. Unfortunately hysteria is rife, and the average person walking down the street believes every little of bile journalists push on their slow news days......

I don't like to see a child in pain any more than anyone else does- but surely education is the only reasonable way to address situations like this in a civilised society? Eugenics and procreation by genetic profiling- certainly is not the way to go.

There are people out there who would subscribe to a ban on type 1 diabetics or people suffering from other autoimmune diseases, having children. This is ridiculous in the extreme in my eyes. In the case on the tv programme- the parents should be properly educated as to the possible outcomes of having children- and the statistical probabilities of each eventuality. Whether or not society should be expected to settle the tab by paying for medical intervention for their subsequent children, alongside their medical bills/social welfare etc- is a different question entirely that I do not believe we are addressing in this thread.

What it comes down to for me is that if there was a possiblity of seeing my own child cry and scream in agony, not be able to go to school, play with their friends because they're not well enough and spend more time in hospital than at home then to me that's enough to not have a child. I would need to know all the facts and possiblities and risks before I thought about it more but I don't want to have a child that struggles through life just because my urge to have a baby is the most important thing to me.

The_Conductor

chatterpillar wrote: »

It's about the individual's choice in those circumstances, as opposed to society's stance on the matter.

But is society not entitled to a stance- particularly when they are expected to pick up the pieces, subsidise hospital care/social welfare entitlements, provide specialised education for the child outside of the mainstream etc...... Once society is expected to provide a safety net for the parents of that child- society has an entitlement to an opinion on the matter?

The_Conductor

Clare Bear wrote: »

What it comes down to for me is that if there was a possiblity of seeing my own child cry and scream in agony, not be able to go to school, play with their friends because they're not well enough and spend more time in hospital than at home then to me that's enough to not have a child. I would need to know all the facts and possiblities and risks before I thought about it more but I don't want to have a child that struggles through life just because my urge to have a baby is the most important thing to me.

Believe you me- I've been there, and I'm grateful that I am here today- a productive member of society. I've been on both sides of the fence, which is why I'm trying to play devils advocate here. Its also why I believe that parents should be forced to educate themselves in situations likely to give rise to children with special needs (whatever those needs might be). I do not believe society should dictate to them that they can or can not have children- but I do think that it is only responsible to dictate that the parents enter parenthood in full possession of the facts regarding their own health, and its possible implications on future children.