Upset by tonights Dispatches - cousin marriages

[MumNWLondon]

AIBU to think that in the light of the known health risks of cousin marriages there are has not been a nation wide campaign alerting people of the risks.

Just watched Dispatches and cousin marriages.

Salient points:

• massive increased risks of children with genetic conditions with cousin marriages - 700 affected babies born each year
• something like British pakistanis have 1/3 of children with genetic diseases yet they are only 1.5% of population
• can't do genetic testing as only 40% of things can even be tested for. with cousin marriage new gene mutations result in genetic conditions
• each child can cost NHS £250k per year
• very little awareness for fear of being "racist" (although same issues would affect non muslims too)

Of course lots of people on program saying well my parents are cousins and i am healthy. of course they are, it just increases risks a lot, doesn't mean they'll def have disabled children.

Rockbird - I can see why this discussion must be tough. I hope your cousin and her DH are very happy and are not "judged" in their lives.

Are they considering genetic counselling if they are going to have DCs?

There seems to be more problems in communities where cousins marry and their childrne marry their cousins and so on. It is a maths thing - a narrowing of the gene pool.

I think that a campaign to explain the genetic consequences would be good because presumably some are unaware of this.

Also access to free genetic couselling would be a good idea.

Does anyone have any stats as to whether the phenomonen is more prevalent in this country as opposed to in Pakistan itself? Sure this means that there are lots of genetic problems there also?

I saw this programme and feel the best way to go is education on the risks. That's all you can do when cousin marriages are not illegal in the UK.

It happens in alot of places and cousin marrying is only one part of it.

My dh from southern europe and his cousin's wife's husband was previously married to his first cousin - they had one child that sadly died. More than that, in my husbad's village there is definately evidence of local inbreeding as although people swear they are not related,the village of 2000 people has about three looks (physcially), very high incidence of people with learning difficulties and kidney disorders and a high percentage of receeding jawlines and teeth issues.

I see people who I swear I recognise - they are not - but rather distant relatives of the people I thought they were. This local inbreeding after many many generations must have the same affect as cousin marrying.

The education perhaps needs to be less re morals and cultural mores but the rude facts of genetics and probabilities. I have a distant relative who was a carier of a very rare genetic disorder. She married someone from overseas who was also a carrier - they had a child with a very very very rare disorder who sadly died before he was 7. That's the luck of these things.

StrictlyTory - regarding the family with the three deaf/blind children, it was a degenerative metabolic disorder, so the parents wouldn't have been aware of the problem initially. They also firmly believed that it was a) God's will, and b) not their fault, so they clearly had no qualms about having more children. IIRC, the mother said that, as the children were "normal" at birth, she believed that modern medicines (vaccines, presumably?) had made them ill.

Blissful ignorance I guess. Maybe, deep down, they know the truth but don't want to confront it.

slowshow, blissful ignornace is a dreadful thing to say. Just ignorance of potential problems or an unwillingness to face the problem. I worked on a gynae ward when I trained to be a nurse, it had a small A+E unit attached. One woman came in twice during the time I was there, in the middle of miscarrying a baby of 15 or so weeks. Both her and her partner were carriers of a gene that meant no pregnancy would ever be viable, that didn't stop them trying. They were even looking into IVF despite the genetics being explained to them. Very sad.

Well, with all due respect, I don't think the two scenarios are in any way comparable.

I agree the woman seemed in massive denial. I just cannot see though why someone didn't spell it out to her after the first 2, who would have have symptoms by the time they tried for a 3rd that they were taking a MASSIVE risk. Or maybe they did and she wouldn't accept it :(

The moment of denial for me was the 17 year old boys who had the 2 drawers of medicine who had deteriorated and the mum asked the doctor what they could do, and he says well its a degenerative disease he's had since birth, and then she burst into tears. He's 17 YO presumably she's had time to come to terms by now?

First cousin marriages occur in other communities. My DH is North African and a niece and nephew of his are married to each other and have two kids. I was very [shocked] (nearest I can find to CatsBumMouth) about it especially as the nephew has an older brother with severe learning difficulties so there is a possibility of a genetic risk.

Happily their children appear to be OK but I would push DH to speak out against any suggestion that those boys married anyone within the family when they are older.

I am from a completely different ethnic background to DH (Northern European v North African) so we have extended both our gene pools a bit.

even

I know a pakistani couple who are married (they are cousins)

Both their dc's have genetic conditions - oldest is severly disabled.

Not sure how relevant this is but thought I'd share.

MumNWLondon - are you really suggesting the mother shouldn't be upset anymore, because she should have got used to it? Her child is deteriorating, of course she's going to be upset.

Having said that, I don't think she fully understood his condition. She said "So they haven't found a cure?" The doctor explained that since it was a genetic disorder, it can't be cured, it affects every cell in his body. That's when she cried.

They clearly need better education given the huge ignorance and I don't see why before you are allowed to marry your cousin you can't have to give some kind of undertaking to bear the cost of the risk or as the Jewish group mentioned above have genetic testing first

smallwhitecat - I don't think anyone's suggesting that the problem here is merely financial or that disabled children's lives are worth less. It is, however, indisputable that a great deal of unnecessary suffering to parents and children is being caused by the practice of inter-cousin marriage and that simply putting an end to this practice would ensure that fewer babies with genetic disorders were born. My DD has a chronic illness, of genetic origin. Her life is just as precious as that of her brothers but if it had been possible to prevent her being born with the condition it would have been so much better for her and all the family.

But where do you draw the line? Parents who smoke? Drink? Take drugs? Go skiing? It can be argued that a pregnant woman doing any of those things is at risk of producing a baby with problems.

You can legislate against first cousin marriage. You can't legislate to prevent women taking risks in pregnancy - I don't think the two are comparable.

I had a friend at uni, white British, whose parents were first cousins. She was terribly embarrassed by the whole thing and was also worried about any potential health problems in the future if she had children. TBH I think it's pretty unacceptable whatever your religion/cultural group due to effects on any possible children but as long as it's legal we have to work with it and provide genetic counselling wherever possible etc.

Would legislating against 1st cousin marriage make much difference though, apart from sending out a signal? Half of children are born to unmarried parents these days, and perhaps a Muslim couple might consider themselves sufficiently married just by doing the religious ceremony, even if the law prevented them from registering it as a civil marriage too?

But genetic counselling picks up only about 40% of the risks.

Xenia your post could be considered very divisive if by 'their' you mean the ignorance demontrated in yesterday's programe.

We should look at the wider picture. Local inbreeding is not uncommon in europe and it gives the same potential outcomes as cousin marriages generation after generation. We must education ourselves of this and in the context of genetic issues across the board, not just cousin marriages which is only one aspect.

In our case I don't think it would have made a difference, they would have just lived together instead. Don't get me wrong, the family went apeshit, I could hear her father exploding from the other side of the Irish sea and they did split because of that. A lot of the family did go , me less so because on the other side of my family, my uncle by marriage's sister married her cousin donkey's years ago so I'm sort of used to it.

Legislation might have worked 100 years ago but marriage isn't a deal breaker any more.

They all frankly seemed quite uneducated and unwilling to learn about why their children had been born with these problems, thats what i found shocking, especially the mother of the 17 yr old, how did she not yet underdstand it was incurable? and that it was a GENETIC illness? has she just ignored any medical conversations she has had with his consultants? I find it hard to digest that she never thought to ask them questions about his future before now.
Infact i found most of them so disgustingly ignorant i turned it off after watching the religous leader fob off the wonderful reporter saying " to my knowledge i have seen no evidence blah, blah! "

OTT - I don't think the families in the programme seemed particularly uneducated. Blinkered maybe but not uneducated.

And the woman with the 17 year old cried. I Don't think it was her ignorance, I reckon it was like any parent faced with the pain of their child - desperation for a cure against all odds. How the heck do you know that she hadn't asked the medics questions before. How on earth do you know that?

i know that if my son was diagnosed with a genetic illness the first question i would of asked would of been about treatments, and what to expect for his future?!
infact i did bloddy ask that when we went for genetic counselling for my DH, and we didn't even know the results yet.

so although i feel sorry for her, i found her infuriating at the same time, she has choosen not to educate herself on the matter despite being told about her DS's condition.

there was also a genuine look of shock on her face when the Dr, explained that it was a genetic illness that couldn't be cured, her reaction seemed that of a person who has just learned a new fact, not something she was expecting, why would she ask this question again after 17 years?