To ask any one of Pakistani descent (Urdu speakers) to please talk about this frankly with me?

[Mebeline]

hi there
I am genuinely trying to understand a conversation i just had with a woman which was loosely related to my professional role. Please don't flame me, I am trying to be actively non-racist after BLM and I am just trying to learn more about cultural norms and values that differ to my own.

She explained to me that her son has a genetic disorder due to 'cousin marriage' in her words, which means that the whole family have weak bones. she went on to tell me that she refused genetic testing , because she was scared about how her husband would react, as she was newly married and her son was young. so she refused genetic testing and so did her husband. I am not sure if relevant, but she has gone on to have another child and is pregnant with a third. She did not tell me if her second child had similar problems as her first.

i do not understand why she would refuse to have genetic testing, and i didn't want to ask further as what she had brought up is not relevant to my professional role, and i did not want to go outside of the boundaries of why she was speaking to me and encourage over disclosure, which she may have later regretted.

Was she afraid that her husband would leave her if her 'genetic material' wasn't good enough?

Surely this is misogynistic abuse? i do not want to collude with this and very much feel as a feminist woman that it is not fair that a woman of colour is experiencing this level of oppression.

Please, to allow this thread to run, can posters avoid racist stereotyping? I am very genuinely asking anyone of Pakistani descent what is going on here and if there is anything i can do to better understand this woman's circumstances and reasons for her actions, and then if there is anything i can do to help her.

TIA

From friends of that culture, the risk of abnormalities is dismissed by many families despite evidence to the contrary as the financial dowry the wife brings with her is their concern, nothing else . My friends married cousins had 2 children with severe abnormalities. Neither child made it past age12 & their quality of life was grim. The husband & his side of the family would refuse all discussion of it whereas the wife's were genuinely worried he'd insist on having more very sick children. They'd been naively hoping any children would be normal until proved wrong

@Mebeline further to my long brainstorming post above, long-term help to break the cycle would be to get her some independence, is there any job-track or training she can get onto? Sometimes through history, women being independent is discouraged by traditional families, but if it was ordained by the state, or pre-requisite to social support it could be a path.
The stumbling block is that state support has been cut to the bone and there are no jobs. :(

I appreciated your original post and efforts.

@Siepie

Overall estimates are that cousin marriage occurs at a rate of 38–49% in Pakistan so I don't think that's comparable.

The OP’s question was about why they would refuse genetic testing. My example showed that non-Pakistani families who know they’re high risk may also refuse it, so the refusal isn’t necessarily specific to Pakistani culture.

Sorry, I should've made it clear I was picking up on this part of your post

Nobody would try and generalise all British people based on that one example.

No they wouldn't because it's not cultural.

So if the wife brings the dowry and has the responsiblity of raising the disabled children, may I ask why the family of the girl don’t make a different decision in who she marries?

It isn't one cousin marriage that is the problem, it is if families are from a region where there is long established history of cousin marriage - that leads to problems when there are so many generations of cousins inter-marriages.

The odd cousin marriage popping up in a family isn't the issue, so wouldn't be made illegal. The issue is deeper and more about the long establish practice in some regions and the fact that there are multi-generations of cousin marriages that is the problem.

Fascinating and also very sad post stella1know.

Why are women hated and demonised so much on the Indian subcontinent?

@justanotherneighinparadise it is called Patriarchy, and started when hunter-gatherers stopped travelling, and formed grain-based agrarian settlements. Cultures that retained aspects of hunter-gathering, e.g Himalayan tribes, or more nomadic societies, remained Matriarchal and don’t have these issues.
It is a long story.

@frazzledasarock

I am from the same culture. I reiterate what a few PP have said, her reasons could be many. If she said specifically she was worried about her husbands reaction, it could be he'd get angry, or it could be he would want to divorce her. I knew a man who was forced to marry a relative from back home. So he went ahead with the wedding (as he was pretty much trapped there), came home and ignored the marriage completely. I often wonder how he is.

I have a friend who had a baby with Edwards Patau syndrome and something else, the baby did not survive the birth, she said she'd not have the tests again in future as she would not have an abortion either way.

Similarly I refused tests also as I knew I would not be personally able to terminate my pregnancies.

I think that the option here was genetic testing of the parents before conception, so they could decide whether or not to have a child at all if both were carriers of the relevant gene.

Not genetic testing of a baby in the womb.

I don't see why we shouldn't have to present birth certificates of parents and grandparents

Is this a joke @SillyOldMummy ? Not all people have birth certificates, particularly at grandparent level. Some countries do not issue "one" birth certificate, one must apply for a copy every time one needs one. I am British, born in Britain, I'm 45. My GF died in 1945, I have no idea where he was born, I only know the year because it's on his gravestone. My GM (his wife) died in 1965, again, I've no idea when/where she was born, I don't know her DoB. My other GPs died when I was very small, I don't know their DoBs, or places of birth at all. My parents are dead (I do know their DoBs and where though!). Are you saying that neither me nor my siblings can marry?

www.ncbi.nlm.nih.gov/pmc/articles/PMC3419292/

i work in healthcare and hear/see the results of severe deformity and autoimmune prevalence that can be produced from marriage involving multi generational cousin marriage.

It used to be talked about more openly and how to educate - it is becoming more and more taboo to mention and you won't find much research etc in recent times - results of some of the thread police here who will come down on others with "ha" caught you, you're racist for even noticing".

I am sad that the poor children have to live with some terrible deformities and shortened lives as the conversation is now a no-go area - puts me in mind of the Police who were worried about interfering in child abuse in northern towns as thought it might seem racist.

Grown up conversations are needed, without the you're racists tag being added - my link shows a fifth of the world population are involved in cultural family inter marriage. It will only get worse, not better if the conversation isn't had rationally.

@KaptainKaveman I don’t want to pinpoint and offend anyone, there are myriad factors. In the religion itself there isn’t this disdain for women, women are allowed to get a divorce, are allowed to remarry, get an equal inheritance, and are required to seek an education. AND she gets her dowry and the agreed marriage settlement back on divorce (better than destitution and hopefully a 50/50 split of assets is agreed) And there is no concept of female “uncleanliness”.
I see it as the old cultures of the subcontinent which are very misogynistic, women on their period aren’t allowed to touch food, else it is contaminated and you really ought to jump on your husbands funeral pyre If he dies.
I don’t know where it is from but only education and independence can stamp it out, for women of all cultures, and hopefully we keep moving forwards instead of back. So really this is a socio-economic problem rather than a cultural one.

If you are from a disconnected village anywhere, chances are that women are more exploitable than elsewhere. But much of the homeland of the woman is very modern, Very connected and really cool. You
Wouldn’t know where you were, there is a lot of wealth and eduction there, in the cities.

I haven't RTFT so sorry if it has already been said but is the resistance to genetic testing purely just based on culture?

I refused a test for DS because I had nieces with disabilities and knew that I would carry on the pregnancy regardless because I had already seen the fulfilling lives that children can still have regardless of disabilities.

A friend of mine has 3 children 2 of which have CF but chose not to have amnio test as 1st child had it and she thought if had test she would have to carry on with the pregnancy as she was worried her child would be given the wrong message of her feelings for them - if that makes sense.

I suppose it makes the question not just about culture but also about discriminating against disabilities also.

I think that if they do the genetic test then it will be medically confirmed but otherwise it's a God's will. It's much easier to say that's what the God wanted and not to carry the blame inside. Medically confirmed the blame will be directly on them and they don't want to carry this blame.

[quote stella1know]@KaptainKaveman I don’t want to pinpoint and offend anyone, there are myriad factors. In the religion itself there isn’t this disdain for women, women are allowed to get a divorce, are allowed to remarry, get an equal inheritance, and are required to seek an education. AND she gets her dowry and the agreed marriage settlement back on divorce (better than destitution and hopefully a 50/50 split of assets is agreed) And there is no concept of female “uncleanliness”.
I see it as the old cultures of the subcontinent which are very misogynistic, women on their period aren’t allowed to touch food, else it is contaminated and you really ought to jump on your husbands funeral pyre If he dies.
I don’t know where it is from but only education and independence can stamp it out, for women of all cultures, and hopefully we keep moving forwards instead of back. So really this is a socio-economic problem rather than a cultural one.

If you are from a disconnected village anywhere, chances are that women are more exploitable than elsewhere. But much of the homeland of the woman is very modern, Very connected and really cool. You
Wouldn’t know where you were, there is a lot of wealth and eduction there, in the cities.[/quote]
And to be fair, we don't know the background of the woman in the OP. She might be a born and bred Brit, she might be from the city background you describe. She might be vulnerable in the way the OP imagines.

My challenge to the OP would be in immediately assuming one cultural factor in the woman's decision - fear of her DH - rather than a complexity of reasons why she would not choose testing. A wide variety of reasons against choosing not to test has been offered by several PP, none of which involve culturally based violence from husbands.

@SouthWestToo you are right. Assuming too much here and veering into stereotypes. Apologies from this Londoner.

@Fizzydrinks123

www.ncbi.nlm.nih.gov/pmc/articles/PMC3419292/

i work in healthcare and hear/see the results of severe deformity and autoimmune prevalence that can be produced from marriage involving multi generational cousin marriage.

It used to be talked about more openly and how to educate - it is becoming more and more taboo to mention and you won't find much research etc in recent times - results of some of the thread police here who will come down on others with "ha" caught you, you're racist for even noticing".

I am sad that the poor children have to live with some terrible deformities and shortened lives as the conversation is now a no-go area - puts me in mind of the Police who were worried about interfering in child abuse in northern towns as thought it might seem racist.

Grown up conversations are needed, without the you're racists tag being added - my link shows a fifth of the world population are involved in cultural family inter marriage. It will only get worse, not better if the conversation isn't had rationally.

The OP is not about whether a woman should marry a cousin, or encourage her child to marry a cousin, it is about her choice not to undergo genetic testing.

I agree with you that research needs to be pursued and the facts made public and the basis of education so that everyone is aware, and that none of this is racist.

However, jumping to the conclusion that a woman's choice not to undergo genetic testing is down to fear of violence of abandonment by her DH based on her heritage is an assumption based on racial / cultural factors. As has been demonstrated by many people explaining their own reasons.

We don't even know that the woman in the OP is married to a cousin. The condition may be present because of previous generations. The woman in the OP is clearly aware of the implications of 'cousin marriage because she told the OP that that is why her child has the condition.

@Fizzydrinks123 I agree with your post.

I think there are two issues really that of genetic testing and then that of consanguinity.

The Born in Bradford studies were covered in depth on r4 a few years back and it was fascinating.

I would think the way forward is through discussion/education so that children are aware of the issues involved before they reach the stage when they are getting married.

It is clearly a risk factor in a pregnancy when you have generations who have closely married within families and people should be aware of it.

as others have said cousin marriage is not something that only happens in one community. I am ethnically but not religious part of another community where this is prevalent. In our case, it's well known that in our very religious communities some form of genetic abnormalities is sort of part of the course. it's not a secret but it's also something that you take as a given. i assume most dont get tested, i mean what for - it's a well known fact and the community sort of takes it as a known risk. you dont talk about it, obviously cant do much about it so just get on with it. could it be something like that.

but yes the fall out from getting tested for one family is quite big - so why do it

If the wife brings the dowry and has the responsiblity of raising the disabled children, may I ask why the family of the girl don’t make a different decision in who she marries?

In some asian families, the bride's considered to have become part of her husband's family to the point where they own her. Some like like friend even need permission for her parents to visit, and they're expected to pay for anything - even food and drink - which that visit might involve

That doesn't mean they no longer care about her of course, but there's no denying sons can be regarded as "worth more", especially as they're the ones expected to provide for parents in their old age

I just wanted to say, not having genetic testing happens in all sorts of cultures and relationships.

I used to work a lot with families with Huntingdons where there has been a genetic test for a while - all my patients were white British. Some families were absolutely no babies without a test first, while others you would visit and nobody was tested and look here's a new grandchild.

Just different approaches to the same problem.

And women can blame themselves in unexpected ways for things being 'genetic'. DH has a condition that only became apparent in his 30s but effectively he was born with. We were quite happy with this explanation but when we told his mum she went into fits about how it was all her fault - it never occurred to DH to blame his mum for somehow growing a small bit of him wrong. All the rest of him turned out OK, it wasn't like she planned every cell division but mums can feel things differently.

Do you mean that you’d expect her to have an abortion if it showed a genetic disease? Because if they are Muslim they are not allowed to have abortions I believe.

It is racist to expect a person just because they look like her by ethnic descent that they would know about this and be the authority on it, like asking a white english on teen pregnancy. Not cool.

@Spaghettibetty345

Do you mean that you’d expect her to have an abortion if it showed a genetic disease? Because if they are Muslim they are not allowed to have abortions I believe.

"They" can.

Whether someone would want to is a different matter.

In this respect they are simply emulating the Royal Families of 19th century Europe. World War 1 was basically a family row writ horribly and horiffically large. All the opponents were related to each other (King George V/Tsar Nicholas of Russia/Kaiser Wilhelm/Emperor Franz Josef of Austria-Hungary were all cousins). See also the Hillbilly mountain people in the midwestern USA, with similar results. In other news, Hitler's mother was his father's 2nd cousin apparently...etc etc etc. The historical taboos around incest make perfect sense if one examines the biology of all this, and marrying a cousin is only one step away, genetically speaking, from marrying a brother or sister. I also wonder if this accounts to some degree for the higher than average % of Covid related deaths among communities where cousin marriage is common, since a compromised immune system is one frequent outcome of someone being born with a reduced genetic 'spread'.

Historically this was done to preserve wealth within families, but European society paid an awful cost, as they ended up being basically ruled by a bunch of inbred idiots, resulting in revolutions and wars.
There's also a horrible snobbery to all this, the idea that the blood of families A and B are 'superior' to that of families C and D, and that for A or B to marry someone from C or D would be 'polluting' their precious 'blood' rather than (as is biologically the case) actually strengthening it.

See also the Indian caste system for example, far more horrible and rigid than anything England ever produced. These things happen all over the world, and it's about time some people understood this, rather than trying to make us believe that these kinds of behaviours are somehow the sole preserve of Caucasian people.