To have children and pass down a genetic disorder?

[killagorilla]

I have Factor V Leiden, it's a blood clotting disorder and is passed down from parent to child. I have it as does my siblings and every family member on my maternal grandfather's side.
It is quite a serious disorder and I have had one blood clot in my lung, all my family are on a low dosage of warfarin/heparin/aspirin to minimise the chances of blood clots.
I have 2 kids and they both have it as well. I was with a friend from university today and her kids and she was asking about it. When she found out that it is passed down from parent to child she got a bit shitty with me.
She said that she would never have kids knowing that they would have it and it could mean injecting yourself regularly and not being able to live a normal life.

I've been thinking about it and now I feel a bit because I look at my kids and can't imagine life without them. But maybe I was selfish to have children knowing they would have something that has caused me so many health problems.

What do you guys think?

Interesting that you mention cystic fibrosis - this is a condition that gene therapy is already treating, not screening out, but actually replacing the faulty gene (not entirely sure how this works) but this will be the way things go, so one day, this may be possible for people with huntingtons disease. You just replace the defective gene (its not that simple obviously) rather than select an embryo that doesn't have the mutation. The way things stand at the moment, they can do genetic tests for many conditions, would you want to know? There are mutations that can make you more likely to develop certain types of cancer. Would you want to know this? Maybe you would if you could treat the condition early due to this knowledge, but what if knowing that you may develop it wont alter the prognosis? I am not sure i would want to know actually.

I think this digresses from the OP though, and i stand by what i said, her friend is a twat

Really Lucyellensmum ? Tell me more. l remember my DD-i-l telling me (my DGD her DD is CF) a bit ago that they had figured out what to do about the faulty gene but not a way of actually physically doing it (sorry l am so so non technical , it's unbelievable) or words to that effect.
So have they now found a way of actually treating CF with gene therapy and how does that bode for a child of 12 with the condition or is it just an embryo or treatment before birth so therefore no good for the poor mites already here ?
It does annoy me sometimes that so much research etc seems to go on in gene therapy, embryo screening etc which is marvellous obviously and the way forward long term but then l think sometimes the children who are already here with these awful conditions are they going to suffer the fate of being born just one generation too early to have been saved and really is less time , resources being spent on what we can do for them at the expense of the lon term solution.

typo sorry - ' has CF '- l should say, l do not usually define her by her CF there is so much more to her than that !

I believe gene therapy for CF is still pretty much in trial phase, sudaname. But a quick google shows that one mode of delivery is using viral vectors, which means that anyone who has CF can be "treated" using the method (although effectiveness is variable).

Oh right thanks Thumb that's good then at least they are working on the ones already here then so l take it all back - l'm wrong again! . My son or exD-i-l havent mentioned anything about her having this but am sure they will be genned up on it if it could help her.

That might explain , l vaguely remember reading with horror about the HIV or Aids virus but a 'safe' version of it being used to transport something or other into their systems (CF sufferers) to correct the gene a few years ago. It really - if that does ever work truly will be a case of 'every cloud has a silver lining' wont it ?

I haven't read the whole thread but I do sort of see where the friend was coming from although I don't necessarily agree completely with her.

I think it is hugely personal, depends on the condition and the impact on the quality of life.

For every person on here that has chosen to have children in spite of their genetic problems, I should imagine there are many that have chosen not to have children because of it (also how many children are aborted because of it?). I know one friend who has done that but the condition was a severe one.

I think if you have lived with a problem and had a reasonable quality of life then you will feel that your children will cope in the same way. Likewise you will not have children if the reverse is true.

I think unless you are actually in that situation then it is easy to say you wouldn't inflict an inherited condition on your child. I admit, I think I wouldn't with a severe condition but who knows - if the alternative would be a life without children.

She said that she would never have kids knowing that they would have it and it could mean injecting yourself regularly and not being able to live a normal life.

But surely you've proved that you are leading a 'normal' life (whatever that is!).

You're living your life and you've had a family.

Nice 'friend'.

FYI, sudaname - this recent article (ok, it's only the abstract but still, it's written in unusually clear language!) suggests that they're considering looking at the human papilloma virus (HPV, some strains of which are associated with cervical cancer but many are not) and norwalk virus, aka norovirus (that lovely gastro virus) as vectors because they can penetrate the unusually thick mucous secretions better than the other virus vectors that have been tried so far. Of course they would use modified versions of these 2 viruses as well, not the originals. :)

honeytea - very interesting points well made, and I agree. Designing out genetic variability in the human race is designing out evolution.

There are concerns re: Down's screening from some geneticists at the moment, because so very few people who get a positive result go on to have the child. Make's sense, you hear - except the people with Down's almost never get any form of Cancer. They seem to be genetically proof to it.

Get rid of all Down's kids, we could also kill the evolutionary fix for Cancer. Not good.

There's also talk that hereditary short shortsightedness might be a trend to change the race away from hunter-gatherer's to the types of closer-up work more needed now. Who knows.

God knows what else is out there like that. I'm all for science - I am a scientist by training - but sometimes scientists shouldn't make decisions.

And bitchy friends never should!

Please don't, anyone, think I am assigning anyone with any condition a 'value' based on what they may or may not be able to contribute to the human gene pool, re the Down's comments

I'm not, and I don't presume that any parents' decision is anything to do with me! It was just a valid, modern example of the dangers of removing what might be seen as 'the bad' and also removing what could be seen as 'the good', without knowing it.

OP what your 'friend' said was very unkind.

It was not selfish of you to have children knowing they could inherit this condition.

my dcs all have a genetic condition which causes them a lot of pain and discomfort, only once did I get a comment similar to what your friend said to you and that was from my grandmother when I told her I was expecting dc4 she couldnt believe I would be bringing 'another handicapped child into the world'

Ignore what your friend said and concentrate on your lovely dcs

Yes Ginnybag that's a bit like my thoughts when reading about the Aids virus could possibly hold the secret to cure CF. Out of one human tragedy sometimes comes the answer to another and so forth so we shouldnt take all the control away from Mother Nature perhaps she still does know a thing or two even in these scientific times.

Thumbwitch

and that's the 'clear language' version .

sorry posted too soon i'm not good with science or technology apparently

but seriously now, meant to say thank you, that is very interesting and quite hopeful that they arent far off. Just hope in time for my sweetie and others.

Gotta go now RL beckons as aforementioned sweetie and her sister and my son coming to stay for a few days and house is a swamp .

Yep! You should see some of the non-clear versions...

just quickly ariane5 please dont be too upset by what your DGM said. They were a different generation completely and werent big on subtlety and l will never forget my DM berating her friend in the street on announcing her 6th pregnancy at the age of 42 to her. 'what on earth do you want another one for at your age, you must be mad' . Though she did congratulate her then. But l think they usually mean well and are thinking only (albeit misguided sometimes) of your best interests and l am sure she thought the world of you and your children.

Right must stop procrastinating now and clean my minging house !

honeytree - 3rd nipple. Brilliant!

Your friend is very insensitive. Blank out ignorant people that make hard and fast judgements before walking a mile in your shoes.
My DB had 4 children before they realised that cerebral palsy from his DW side had been passed on to three of them. It was . No-one judged, and it was no-one's place to (although we were a bit when she was talking about having another...).
When your kids have kids the technology (and politics) may have moved along enough that embryo selection will be possible and it could potentially be eradicated. Whether that is morally 'right' or not is irrelevant, it will be down to choice. Just as it was YOUR choice.

so very few people who get a positive result go on to have the child

But logically the people who would go on to have a child with DS most likely wouldn't have any tests, and certainly wouldn't have any tests that carried a risk of miscarriage. The sample of "people who have the test" is massively skewed towards "people who would abort".

Thanks for the link Thumbwitch :)

Ginny.Children who have Down syndrome are far more likely to develop leukaemia than children who do not have Down's syndrome. They're between ten and twenty times more likely to develop leukaemia. They may possibly have a lower risk of some cancers,,but that's certainly not true of childhood leukaemia.

YANBU, OP.

I have Factor V Leiden too, it doesn't actually affect me at all and I wouldn't even know I have it if I hadn't had the blood test at 16.

It doesn't affect day-to-day life, it doesn't leave you in pain and it's only rarely life- threatening.

Don't beat yourself up.

Sorry OP but I do think people who know they have a high risk of passing a serious genetic problem onto their offspring are being rather selfish having children. I know it's all a risk and even those who think they are perfect genetically (as if!) could unknowing have something nasty to pass on, but if someone knows they are high risk I think it's kinder not to have children and to adopt or foster instead if parenting is important to them. Personally I wouldn't be able to look at my ill children and not feel that I was the cause of their pain and suffering if I was in that situation. What I find odd is that anyone who breeds animals from unhealthy stock is seen as so irresponsible yet us humans do it to ourselves all the time.

Tell her to fuck off;; then not to breed as her kids might get the complete bitch gene.

Your friend is a nasty, insensitive arse.

I never post, but now I had to. That is just ridiculous. I have the same thing, so do my sisters, and my twin girls. Never had any problems. My grandfather, who just died at 98 also had it. Definitely didn't affect his life negatively. If I remember correct, about 15 percent of people from my home country (one of the Scandinavian countries) is thought to have the same mutation. Might be dated information, but the point is, it's extremely common.

People are so ignorant, can't believe your friend.

There's really no such thing as a HIGH risk of SERIOUS genetic condition! "High risk" would be, what, 50/50? And that would mean a dominant gene, which would mean that the parent would have it. Is it really a SERIOUS condition if a parent could have a child and live long enough to see child through to adulthood without child having to be a carer? Bearing in mind that a few generations ago medicine wouldn't be able to keep someone alive and healthy long enough.

People just see "genetic condition" and assume that that means the child will have a life of painand suffering followed by an early death, which is nonesense.

IMO if you ahve a child knowing that you are unlikely to survive long enough to see it leave school, and that you are likely to be in need of care long before that stage, then that is a far more significant decision than any potential genetic condition.