Do you think it is morally right to have a disabled child?

Medusa22 · 22-10-2015 03:51PM #1

Let me elaborate here. I'm talking about people who are aware that they carry a particular gene that causes disability or illness and they consider the risks and still decide to have children, or they already have one ill/disabled child and choose to risk having another?

I was thinking about this because of the cousins thread, and also because I have Cystic Fibrosis which is a genetic disease that is the most common genetically inherited disease in the world, and Ireland has the highest incidence of it in the world. One in 20 people in Ireland carry the gene for CF and if they reproduce with another person who carries the gene then there is a 1 in 4 chance of their child having CF, so every time a couple who is aware that they carry the gene has a child, that child has a 25% chance of CF.

So, if you knew that you carried a gene for an illness or a disease would you still choose to have a child, would you risk it? Would it depend on the disease and the severity or the percentage of risk? I mean you could say that when my parents had me, I had a 75% chance of not having CF, and I have an older sister who doesn't have it but carries the gene (you need 2 genes to actually have CF because it's recessive, but just one to carry it).

I think I'm conflicted on this one myself, I mean I hear about people who already have one child with CF and deciding to 'risk' it and have another, and part of me feels that it is their choice and if I had to choose I'd rather be alive with CF than not exist at all, but then again, they are knowingly taking a risk of inflicting a debilitating illness on their child and I don't know if I could do that either. I'm talking about genetic diseases in general though, not just CF, but that's just my own area of expertise so to speak.

corner of hells · 22-10-2015 04:13PM

Medusa22 wrote: »

Let me elaborate here. I'm talking about people who are aware that they carry a particular gene that causes disability or illness and they consider the risks and still decide to have children, or they already have one ill/disabled child and choose to risk having another?

I was thinking about this because of the cousins thread, and also because I have Cystic Fibrosis which is a genetic disease that is the most common genetically inherited disease in the world, and Ireland has the highest incidence of it in the world. One in 20 people in Ireland carry the gene for CF and if they reproduce with another person who carries the gene then there is a 1 in 4 chance of their child having CF, so every time a couple who is aware that they carry the gene has a child, that child has a 25% chance of CF.

So, if you knew that you carried a gene for an illness or a disease would you still choose to have a child, would you risk it? Would it depend on the disease and the severity or the percentage of risk? I mean you could say that when my parents had me, I had a 75% chance of not having CF, and I have an older sister who doesn't have it but carries the gene (you need 2 genes to actually have CF because it's recessive, but just one to carry it).

I think I'm conflicted on this one myself, I mean I hear about people who already have one child with CF and deciding to 'risk' it and have another, and part of me feels that it is their choice and if I had to choose I'd rather be alive with CF than not exist at all, but then again, they are knowingly taking a risk of inflicting a debilitating illness on their child and I don't know if I could do that either. I'm talking about genetic diseases in general though, not just CF, but that's just my own area of expertise so to speak.

I dunno, but let me tell you about a real love story. Huntington disease runs in my family , Google it if you never heard of it.

You have a 50% chance getting it if one of your parents has it , I think your mother has to be the parent.

Anyhow an aunt of mine died of it years ago after having a couple of kids , our family knew nothing about it because both my grandparents came from an orphanage.

One the kids my cousin met this lad who after time asked her to get get married , she had to explain our family history and the risk of her developing the disease.

She told him to think about his choices , he did for all of thirty seconds and told her he loved her despite the risks of her dying of a disease and the risks of any children developing the disease too.

They're married and live their lives day to day not worrying about what they can't control.

I probably didn't answer your questions very well , but life is for living and not dwelling on what may happen.

sullivlo · 22-10-2015 04:13PM

I think it's a tough one tbh. It brings up many moral and ethical questions. Possibly religious questions for others.

I don't think anyone would know what to do unless they were in that situation.

There's a strong genetic link for cancer in my family. Every generation has had BRCA1/2 positive cancer. I may get tested in the near future, however I'm not sure that it would stop me procreating should I be positive.

I think it would depend on the illness and the risk. And where do you draw the line at genetic screening? And are we looking at designer babies? And if we are, will we screen for embryos that are likely to have more positive characteristics? (That's a bit far fetched, but what level of "disability" would we screen for?)

Like I said, moral and ethical questions raised.

sullivlo · 22-10-2015 04:14PM

corner of hells wrote: »

I dunno, but let me tell you about a real love story. Huntington disease runs in my family , Google it if you never heard of it.

You have a 50% chance getting it if one of your parents has it , I think your mother has to be the parent.

Anyhow an aunt of mine died of it years ago after having a couple of kids , our family knew nothing about it because both my grandparents came from an orphanage.

One the kids my cousin met this lad who after time asked her to get get married , she had to explain our family history and the risk of her developing the disease.

She told him to think about his choices , he did for all of thirty seconds and told her he loved her despite the risks of her dying of a disease and the risks of any children developing the disease too.

They're married and live their lives day to day not worrying about what they can't control.

I probably didn't answer your questions very well , but life is for living and not dwelling on what may happen.

I studied Huntingtons. It's a real doozy.

topper75 · 22-10-2015 04:39PM

If the child is not absolutely perfect, forget about it.

And when you are done, don't forget to click your boot heels when you are paying the good Dr. Mengele his fee.

Azalea · 22-10-2015 04:44PM

topper75 wrote: »

If the child is not absolutely perfect, forget about it.

And when you are done, don't forget to click your boot heels when you are paying the good Dr. Mengele his fee.

Big difference between being severely disabled and not being perfect (nobody's perfect anyway).

Medusa22 · 22-10-2015 04:44PM

topper75 wrote: »

If the child is not absolutely perfect, forget about it.

And when you are done, don't forget to click your boot heels when you are paying the good Dr. Mengele his fee.

I am not talking about from a eugenics perspective or that a child with an illness is ''weaker'' or somehow unworthy, sure I have a genetic disease myself. I am thinking of the suffering of any potential children who are born with an illness that the parents were aware of in advance.

Zillah · 22-10-2015 04:44PM

corner of hells wrote: »

I dunno, but let me tell you about a real love story. Huntington disease runs in my family , Google it if you never heard of it.

You have a 50% chance getting it if one of your parents has it , I think your mother has to be the parent.

Anyhow an aunt of mine died of it years ago after having a couple of kids , our family knew nothing about it because both my grandparents came from an orphanage.

One the kids my cousin met this lad who after time asked her to get get married , she had to explain our family history and the risk of her developing the disease.

She told him to think about his choices , he did for all of thirty seconds and told her he loved her despite the risks of her dying of a disease and the risks of any children developing the disease too.

They're married and live their lives day to day not worrying about what they can't control.

I probably didn't answer your questions very well , but life is for living and not dwelling on what may happen.

There is a very simple genetic test for Huntingtons and I think it was an act of extraordinary stupidity and ignorance to barrel ahead without having it done, and an act of monumental evil to choose to have children if you know you have it.

Huntingtons guarantees an utterly nightmarish death and for someone to flip a coin to see if they condemn another person to it is pure reckless evil in my book. Your cousin is an irresponsible moron. You should tell her to get the test before she has children, she has absolutely no right to make that decision for anyone else.

Stranger Danger · 22-10-2015 04:49PM

Zillah wrote: »

Your cousin is an irresponsible moron. You should tell her to get the test before she has children, she has absolutely no right to make that decision for anyone else.

Except he never mentioned anything about her choosing to have children.

Great outrage though.

TheNobleKipper · 22-10-2015 04:49PM

topper75 wrote: »

If the child is not absolutely perfect, forget about it.

And when you are done, don't forget to click your boot heels when you are paying the good Dr. Mengele his fee.

Ok everyone, can we please close the thread as the discussion has just been ended by Godwin's law. Didn't take very long

Zillah · 22-10-2015 04:52PM

Stranger Danger wrote: »

Except he never mentioned anything about her choosing to have children.

Eh...

She told him to think about his choices , he did for all of thirty seconds and told her he loved her despite the risks of her dying of a disease and the risks of any children developing the disease too.

If she has it, their children have a 50/50 chance of getting it. And my outrage is justified. People with Huntingtons lose control of their body like ALS, but they also go completely insane over a period of years, with massive personality changes, coupled with rage and abusive behaviours towards their own loved ones - it destroys body, mind, and dignity.

It's basically one of the worst thing you can die of, and to waltz into giving it to your children when there is a simple test to see if you have it is evil.

Stranger Danger · 22-10-2015 04:53PM

Zillah wrote: »

Eh...

If she has it, their children have a 50/50 chance of getting it. And my outrage is justified. People with Huntingtons lose control of their body like ALS, but they also go completely insane over a period of years, with massive personality changes, coupled with rage and abusive behaviours towards their own loved ones.

It's basically one of the worst thing you can die of, and to waltz into giving to your children when there is a simple test to see if you have it is evil.

And it says she is planning to have children..............where?

Badly Drunk Boy · 22-10-2015 04:54PM

corner of hells wrote: »

I dunno, but let me tell you about a real love story. Huntington disease runs in my family , Google it if you never heard of it.

You have a 50% chance getting it if one of your parents has it , I think your mother has to be the parent.

The first time I heard of Huntington's chorea was in Kurt Vonnegut's book Galapagos. You should give it a read (but obviously not as a reference, since it's fiction). There was a very different, yet related, ethical dilemma regarding it.

shamrock55 · 22-10-2015 04:54PM

Personally i think its very selfish to knowingly bring a disabled or a child with genetic problems into the world, i for one wouldnt do it

Zillah · 22-10-2015 04:55PM

Stranger Danger wrote: »

And it says she is planning to have children..............where?

In that line I quoted?

Duggy747 · 22-10-2015 04:56PM

Personally, if there was a high chance that I would pass on a disability but I still wanted to have a kid then I'd probably just look into adoption instead.

I wouldn't gamble with another person's life like that.

Medusa22 · 22-10-2015 05:02PM

Duggy747 wrote: »

Personally, if there was a high chance that I would pass on a disability but I still wanted to have a kid then I'd probably just look into adoption instead.

I wouldn't gamble with another person's life like that.

I'd tend to agree with you there. There is a process called PGD (pre-implantation genetic diagnosis) which is used to screen embryos for genetic defects and then healthy embryos can be implanted using IVF. Some people opt for this but it is expensive and not always successful so others don't. I think if I were going to have children, then I'd do something like this.

seamus · 22-10-2015 05:02PM

You're kind of asking two questions here:

a. Is it morally right in general?

b. Would you do it?

I guess the key factor in both questions is the likelihood of the child developing a serious disability. That is, one which presents a severely degraded quality of life, or a shortened lifespan (i.e. not living well into adulthood). So deafness or a severe visual impairment isn't really one. Because if the odds are 1 in 1,000 or even 1 in 100, then you know, I'd probably take the risk. But if you're looking at 1 in 4 or 1 in 2, I would probably not, and I would judge someone who took the risk. But if it was 1 in 10, I probably wouldn't take the risk, but I wouldn't judge someone who did.

And again, it depends even further on the severity of the disease. If a shortened lifespan is a possible outcome, is it likely to be a lifespan of 12 years or 40 years? Because the latter isn't nearly as bad as the former.

TheNobleKipper · 22-10-2015 05:02PM

On topic now. I think it's very difficult to assess unless you are are in the position, so I guess most people here would not be able to fully understand. If I knew I had a severe illness that would potentially lower the quality of life for my child I'd rather not risk it. There are so many terrible diseases in the world and I am lucky to have been born healthy. I've met people who are suffering from genetic diseases and I have noticed the constant worry that the parents seem to be carrying on their shoulders. I think everybody wants the best for the child but if there is a big risk to begin with you should probably think twice before you might give someone the gift of a hard and painful life

Turtyturd · 22-10-2015 05:09PM

Nope, when my OH was pregnant the biggest stress for me was worrying if the child would be healthy. I don't think I have ever felt as much relief as I have when everything was ok. Couldn't imagine purposely bringing a child into the world knowing there is a chance they could have certain conditions, also think the option of abortion should be available to those who unknowingly find themselves in the situation.

mahoganygas · 22-10-2015 05:14PM

If you decide not to have children then you really need to ensure your contraception plan is solid.

I know a couple who had a child with CF. They then chose not to have any more children.
Fast forward a few years and the mother became pregnant again much to their surprise. They felt really guilty during the pregnancy. It really put a strain on their relationship. I think blame came into it.

Luckily the second baby was not diagnosed with CF.
They then sat down with a doctor to look at more permanent contraception options.

The_Valeyard · 22-10-2015 05:16PM

Can see this thread going down in flames.

topper75 · 22-10-2015 05:16PM

Azalea wrote: »

Big difference between being severely disabled and not being perfect (nobody's perfect anyway).

Nobody's perfect. But some get to play God?!

Medusa22 wrote: »

I am not talking about from a eugenics perspective or that a child with an illness is ''weaker'' or somehow unworthy, sure I have a genetic disease myself. I am thinking of the suffering of any potential children who are born with an illness that the parents were aware of in advance.

We all are born to suffer. That is at the essence of life for all of us. I can't answer how some have greater burdens than others. But I know it's not our call. To believe that it is crosses a crazy ethical rubicon.

beks101 · 22-10-2015 05:19PM

IME if someone badly wants kids then the risks associated such as passing on a genetic disease will be overruled.

Like another poster a relative-in-law of mine has huntington's and all of her sons - my cousins - have a 50/50 chance of carrying the gene and developing the disease themselves/passing it along to their children. Two are married with children. None have taken that genetic test - opted not to deal with the death sentence that it may present. The probability is high that at least one of them is a carrier.

I feel when you've not been in that very scenario, it's impossible to call. As a non-married, non-mother with no immediate major life plans along those lines and no genetic disorders in my family history, it's very easy of me to say - no way. Wouldn't even entertain the notion. But there's ideas and theories and judgements and notions about life, and then there's actual life and the realities that it presents.

Medusa22 · 22-10-2015 05:26PM

topper75 wrote: »

Nobody's perfect. But some get to play God?!

We all are born to suffer. That is at the essence of life for all of us. I can't answer how some have greater burdens than others. But I know it's not our call. To believe that it is crosses a crazy ethical rubicon.

If there are any ways or means at my disposal to limit or prevent someone else's suffering, then I'll use them, regardless of whether someone else thinks I am playing ''God'' or not.

22-10-2015 05:26PM

No, adoption is a much better option all round when a significant risk is there.. I'd hate to take that risk and give a child a condition that didn't let him do what I've done.

Medusa22 · 22-10-2015 05:29PM

seamus wrote: »

You're kind of asking two questions here:

a. Is it morally right in general?

b. Would you do it?

I guess the key factor in both questions is the likelihood of the child developing a serious disability. That is, one which presents a severely degraded quality of life, or a shortened lifespan (i.e. not living well into adulthood). So deafness or a severe visual impairment isn't really one. Because if the odds are 1 in 1,000 or even 1 in 100, then you know, I'd probably take the risk. But if you're looking at 1 in 4 or 1 in 2, I would probably not, and I would judge someone who took the risk. But if it was 1 in 10, I probably wouldn't take the risk, but I wouldn't judge someone who did.

And again, it depends even further on the severity of the disease. If a shortened lifespan is a possible outcome, is it likely to be a lifespan of 12 years or 40 years? Because the latter isn't nearly as bad as the former.

I suppose I'm thinking more about quality of life and a shortened life expectancy. I am unsure how I would feel say if I found out that I could pass on deafness or blindness to a child, knowing that quality of life could be affected but also that they could adapt, and that life expectancy and health would not be affected. I think I'd be more inclined to have a child then, rather than if the child had a shortened life expectancy or a risk of debilitating or chronic illness.

petrolcan · 22-10-2015 05:33PM

Go for it.

I need to be kept employed.

mahoganygas · 22-10-2015 05:34PM

Jews are particularly prone to inherit certain genetic disorders.
Tay-Sachs disease is particularly common in New York based Jews.

It causes a deterioration of nerve cells around 6 months of age and usually results in death by the age of 4.

A Jewish organisation in NY will screen all Jewish children from a young age to see if they carry the gene. This is kept anonymous - they never know if they are a carrier.
When they are adults and contemplate marriage the couple can approach the screening organisation to see if they are 'compatible'.
It is common that engagements are broken off before couples get too committed to each other.

It's really tragic when you think of a young couple in love, but this approach does have it's merits.

Medusa22 · 22-10-2015 05:34PM

beks101 wrote: »

IME if someone badly wants kids then the risks associated such as passing on a genetic disease will be overruled.

Like another poster a relative-in-law of mine has huntington's and all of her sons - my cousins - have a 50/50 chance of carrying the gene and developing the disease themselves/passing it along to their children. Two are married with children. None have taken that genetic test - opted not to deal with the death sentence that it may present. The probability is high that at least one of them is a carrier.

I feel when you've not been in that very scenario, it's impossible to call. As a non-married, non-mother with no immediate major life plans along those lines and no genetic disorders in my family history, it's very easy of me to say - no way. Wouldn't even entertain the notion. But there's ideas and theories and judgements and notions about life, and then there's actual life and the realities that it presents.

I think that for myself, I couldn't have children if I knew that I had a 50/50 chance of passing on such a devastating condition, and I try not to judge people who do, but I find it difficult. Having said that though, it is easy for me to do so, as I don't have any urge to have children and I never have, so I know that I am in a position where it is very easy for me to judge others who choose to have children in less than ideal situations, and I try to bear that in mind.

RobertKK · 22-10-2015 05:34PM

I recently had a genetic test done for health and ancestry.
I think everyone should be genetically tested for health, I can't complain about my genes, got a good health report, my biggest risk is from skin cancer which I found interesting, given my grandfather died decades ago from it - before sunscreen was used but he was also old.
I don't want children, but I know if I changed my mind, my genetics are good as they have no variation or gene that would lead to a disability.

There will be genetic treatments to silence or replace certain undesired genes.
Love is blind, but one could argue there is a need to see if you are genetically compatible, and if not, either move onto someone you are, or simply not breed, and if you want to breed then you are prepared for the consequences.
There is now so much information you can have before you even consider having a child. It is time that people use the technology available and not have a guessing game.

Do you think it is morally right to have a disabled child?

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