To be disturbed by wilfull ignorance around genetic inbreeding?

[M9009]

I've come from a country were cousin marriage and indeed marriage to any close relative if illegal.
I've recently started working in a dialysis unit and I'm so disturbed by how many parents are young children born of first cousin marriage. Usually from South Asian backgrounds.
Today I was speaking to one parents who has 9 children, all in need of kidney transplants. The eldest 2 have already had theirs. Parents are first degree cousins and each have various medical problems of their own.
Why, as a society, do we allow these marriages? It seems so cruel to the children who are born with medical and genetic problems.
Maybe I'm easily shocked, I don't know.

Those figures for kids needing kidney transplants are disturbing, I had heard a bit about first cousin marriages as it's an issue in our London borough but not realised that link. I have a niece who is on the transplant list (nothing to do with cousin marriage) and it's upsetting to think that she and people like her have a lower chance effectively of getting the help they need because there are so many other kids on the transplant list, who might not be there if something was done about this issue. There are only a certain number of organs available so it's just unfair that this issue isn't being raised and stopped, as it doesn't just affect the families with cousin marriages but all children who need health services.

My mum was 17 when she married, I was still all for the marriage ban for under 18s that recently came in. Despite my parents being fairly happily married for over 40 years.

The should have brought in a cousin ban at the same time.

I have read various articles that say having children over 35 carries similar risks to having children with first cousins. One is encouraged on here and one is considered really stupid. There is definitely prejudice in this debate. I think we need to be very factual about both.

There’s a sort of magical thinking though that somehow there’s always a solution to every problem, and the answer is never to interfere with what is seen as ‘human rights’.

But (and I’ve said this for a while now) the biggest problem we will face in 30 years will be the sheer number of disabled adults that need 24/7 care, or will never work.

Just look at the number of people on here with severely autistic non verbal children, or children with autism who will likely never be independent and will always need care. You barely saw this pre 2018, yet it’s skyrocketed in recent years. Add in the fact these thousands of disabled children will be adults by that point, and our current rate of unemployment due to disability in general, and the future looks incredibly bleak. Many of these children will need multi million pound packages with high staff ratios; and this will just be money we won’t have.

It all feels very hopeless tbh

Having children over 35 isn’t encouraged on here. Any thread with a woman saying she’s thinking of having a child later in life has lots of posts saying how bad an idea it is.

It is different in that you can choose to exclude cousins from your dating pool and find a partner but sometimes things don’t work out for people until later in life.

Again identifying if people are marrying cousins would mostly be done on a "sign to say you aren't related basis"/self reported.

Many of the cultures where couples marrying is prevalent, would lie about it but also wouldnt have easily traceable documentation at hand. It would be partially based on people born in other countries, or people not overly engaged in the system eg travellers. Even using uk records is really tricky and time intensive.

Many of those cultures aren't also bothered about an "english" legal marriage. There's nothing to stop, or trace people doing faith ceremonies in non registered venues or their back gardens. My wedding in the eyes of my culture wasn't the day I had the registrars!

I think banning it will just lead to people lying about it. As a nhs worker its helpful to know if there is a risk, but id have no way of knowing if people lied, and they would be motivated to lie if they felt they/the baby would recieve different care

How many people here would consent (and pay for) the government taking dna in order to allow you to marry?

Besides its really not marriage people are worried about, it would be dna testing when pregnant. Then what would you do if you discover it was a cousin cousin child? Force an abortion? Take it in to care?

That's why its helpful to have targeted education and voices within that community, to stop faith leaders doing ceremonies where ever they are, so people that rent venues might not, so that the people themselves dont think its a great idea

Us all shouting it should be illegal and isn't it gross doesnt change a thing for them or the children other than reinforce an "us vs them" mentality where they become more closed off to nhs recommendations
Its bloody hard work to get people like traveller girls to stay in the system eg regular nhs support, schooling, health related classes. They dont need an ounce of encouragement to assume that we hate them all and want to persecute them

Parents who produce a disabled child due to cousin marriage should be sent the bill for their care. It will be lifelong, often 24/7 care but they expect the taxpayer to foot the bill.

Although in a way, why shouldn't they think it's all fine and dandy when our NHS is telling them there's no downsides and that the British public doesn't mind at all forking out millions of pounds to pay for it.

If I posted 'I'm in love with my first cousin and we want to start trying for a baby' I bet I would get no one telling me to go for it and how they did it and were fine. It would all be about selfishness and unnecessary pressure on the NHS etc. it would be a complete different tone to the older mums ones. I'm not saying people shouldn't:t have babies over 35 (I wouldn't exist if they didn't) but the hypocrisy is quite noticable.

There was a C4 documentary on this years ago, focusing on a Pakistani community from what I remember.

The women (who were caring for the poor children born with disabilities) were all trying to press a ban on cousin marriage. The male religious leaders sat around saying they would consider if if it was proved cousin marriages causes issues but when presented with the evidence would shut it down - so frustrating to watch.

Clearly you have never been in a area where incest is ripe . I worked very closely with a Pakistani community at a stage and if you really think it’s rare you are seriously mistaken ! Deaf people lead a normal life , asd genetics haven’t been properly established but most of what I’ve seen has ! It’s not hysteria when you see whole families unable to read a normal life and still having children despite the 5 they have live bedridden .
I am not talking about ASD and cleft palate . I’m talking about people whose children suffer pain every day and they still carry on breeding .

It would take a brave person to speak out. Politicians are looking at the voter base in their constituencies, anyone in the public sector is fearful of losing their job.

Nothing will be done about it. Expect a lot more of this coming down the line as the demographics of the UK changes.

It certainly should not be allowed. It is clear that significant health conditions and disabilities can occur. Entirely avoidable.

How would this work in Ernest though? A child needing a kidney transplant is allowed to die because their parents made a choice? That we dont allow them any form of education? That we allow children who had no say in it to die/live inpoor conditions or even generally have a worse life than those who got their disablities the "good way"?

That when an adult presents to a gp they first check if your parents are related before they treat you?

Is it just first cousin marriages or anyone that has a baby with a higher likelyhood of disabilities eg fetal alcohol syndrome, babies born under addiction, people with genetic conditions?

Should it be the same for adults who cause their health difficulties, eg obesity, working to stressful jobs? Extreme sports? If you drive too fast? My mum broke her arm riding a horse, does that count? What about if you chose to have a baby? That's risky to everyone or just pay if you've got too high bmi or a heart condition?

Should they all get a bill?

Anyone who's worked in an insurance related field will know how often stuff gets tracked back to an earlier "fault" incident eg my dog can't get their meds paid for because their liver issues could possibly be linked to the use of medication to manage an injury before they were insured.

Yes, agreed, because the disabilities occur as a result of many generations of cousin marriage. It is very costly to the tax payer and the very least that should happen is that the NHS issues guidelines that it's not OK.

I work in South London. I am surrounded by families of Pakistani origin living normal lives. I have worked in special education and related health fields for over 30 years.

Of course I am aware of families where there are several children with recessive genetic conditions. There are far more where all the children are absolutely fine. Deafness is actually the most common outcome of recessive genetic conditions and, as you say, the kids are fine and live happy, productive lives.

I've also worked with families where all 3 of the kids have Duchenne muscular dystrophy (white British) and where all 3 have Joubert's syndrome (parents from different western European countries).

Genetics can be incredibly cruel. But there are a vanishingly tiny proportion of families who have children as you describe and this thread is vastly overstating the prevalence of these families.

anyone in the public sector is fearful of losing their job

NHS staff constantly talk about first cousin marriage in the context of recessive genetic conditions. Its a fact. Noone is going to lose their job for stating that it's a cause of some of our patients' difficulties.

The difference being that the risks of being over 35 are largely (not completely) Downs / Edward’s /pateau syndrome for which routine screening is offered and more than 90% choose not to continue the pregnancy.

The risk of autism also goes up, albeit from one small number to another.

Non verbal autism seems to have gone through the roof. I didn’t know a single child with this growing up, now I know of 5 (and no, I’m not old enough that ‘they were in institutions’).

All teachers I know who have worked for decades say the same

That’s not a reason not to tackle it.

Also SEND schools in the areas have waiting lists, so lots of children are placed in mainstream that doesn’t and can’t meet their needs.

I also want to add it’s perfectly fine for us to legislate against cousin marriage even without disability side effects because it’s utterly distasteful and something society finds unacceptable.

We legislate against a lot of things which aren’t technically harmful but are at odds with our moral code, and this is one of them.

Can we really afford to keep producing severely disabled children when we already have ever increasing numbers and enormous expense?

Yes, I know how that sounds. Yes, it’s still a practical discussion that needs to be had.

But genetic counselling and genetic screening ahead of cousin marriages is something people are being increasingly educated about, too.

The issue is there being a higher chance that cousins will carry the same faulty recessive gene which leads to a higher risk of their offspring suffering some conditions. They can do carrier screening where they test for the most common inherited conditions within certain populations, or Whole Exome Screening, a more comprehensive screening. to identify shared, harmful genes.

The problem, according to the experts working on the huge Born in Bradford study is more to do with endogamy within smallish communities -- marrying within the group, regardless of whether there's a family relationship. Similar in the UK Orthodox Jewish community.

https://www.bbc.com/news/articles/c241pn09qqjo

just curious , what do you suggest is done ? Because most of these marriages are not even agreed by the bride and most women don’t want to marry their cousins and have children suffering . If you truly thing criminalise cousin weddings is not the right choice ? What do you feel is the right choice ?

I think education is important, including education about some of hysteria on this thread suggesting that disability is an inevitable consequence of every consanguineous marriage. I have friends of Pakistani origin who married their cousins and had entirely unremarkable families.

Repeated first cousin marriage is not healthy, nor is marriage within tiny insular communities. But we need to be aware of the potential for unintended consequences before legislating and one of the first things we need to do is recognise that, for many people, first cousin marriage is a positive outcome. As is often said, nothing about us without us. If we can't convince people through education and just legislate, ways will be found to circumvent the legislation and, most worryingly, families may not be honest about their children's health.