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

@goldenharvest

I have several friends born in Pakistan and in traditional arranged marriages. What you describe is a form of abuse to us, but to my friend this is a cultural norm, that the woman has very little say in a marriage, and going against her husbands wishes would be disrespectful. It is also the case as she would be a Muslim that genetic counselling would be pointless because whatever child is given it is a gift from God, and therefore its life is respected and there would be no thought of abortion. Her fear of being seen as carrying a genetic defect would lower her in the eyes of her husband, although him carrying the gene would have no impact.

To us this is very misogynistic but it is culturally accepted by women, particularly if they have been born in Pakistan or brought up in a strict household. It is not for us to transplant our views on womenhood onto other women however unfair it seems. The friends I know accept that this is an important part of their culture and are insistent they agree with this patriarchy.

If NHS services are being used to alleviate some of the suffering caused to the children (and I hope they are) then society is quite entitled to have a view on cousin marriage. Just as people take a view on IVF or bariatric surgery funding. Or large families receiving benefits.

Did you watch Born To Be Different on Channel 4?

One of the families on there is white British, and had a daughter with very severe disabilities and health problems. She died when she was a teenager. The couple had previously had a baby with the same condition, who died shortly after birth, and had learned at that point that they were both carriers. They chose to have several more children without any more genetic testing, because they wanted more children together and didn’t want a termination.

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

I’m not from this culture but I have refused genetic testing for breast cancer genes even though I could have the gene and can access the test. This is because I have evaluated the risks and the issues and I’m happy not to be tested. I have a little girl and if I carry the gene I may pass it on to her but it wasn’t a factor for me. We all differ don't we, I had genetic testing for the breast cancer genes, my main reason was I wanted to know for my DD and DGDs. I'd seen my GM and 3 aunts die from it and saw cousins, one only a baby, left without their mothers so I suppose that is also a factor. So many reasons why people make the decisions they do.

OP you are assuming this is some sort of abuse by the husband but it could just as easily be that if the husband knew this was likely to happen again he would decide they shouldn't have more children and she wants more. There is no way we can know what she is thinking.

I feel incredibly sorry for the children. I watched that documentary earlier this year and just wept for their distress. I’m going to keep my opinions to myself and hope for change in the future for many culturally accepted practices across the board.

I am trying to be actively non-racist after BLM

This is an attitude you have to try to have???

If you're white, it's an attitude you should try to have, too. If you think you're free of all racism and unconscious bias then you're almost definitely wrong. It's not good enough to pat yourself on the back and ignore the issue of racism; you have to actively work against ingrained prejudice.

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.

@Siepie

Did you watch Born To Be Different on Channel 4?

One of the families on there is white British, and had a daughter with very severe disabilities and health problems. She died when she was a teenager. The couple had previously had a baby with the same condition, who died shortly after birth, and had learned at that point that they were both carriers. They chose to have several more children without any more genetic testing, because they wanted more children together and didn’t want a termination.

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

Posters who want cousin marriage to be banned because of its genetic impact - would you also ban this couple from procreation?

@ZoeTurtle

I am trying to be actively non-racist after BLM

This is an attitude you have to try to have???

If you're white, it's an attitude you should try to have, too. If you think you're free of all racism and unconscious bias then you're almost definitely wrong. It's not good enough to pat yourself on the back and ignore the issue of racism; you have to actively work against ingrained prejudice.

I agree. We should actively check ourselves regularly.

There is a specific problem with cousin marriage in the UK (or other small expat communities) as there are a limited number of cousins to marry who now are in the second or third generation of cousin marriage from the same limited pool of families. So, cousins marry, then their offspring marry cousins, and so on. British immigration laws contribute to this as it is now much harder to marry a cousin who is not in this country already.

I was at school (in Bradford) with many first generation British Pakistani and Kashmiri friends who did not seem to have any higher level of inherited disability than the rest of the school community.) The cases shown by the Born in Bradford study had simply not appeared yet.

I have no idea why this woman has chosen to avoid genetic testing. But if I were her, I might be worried that a positive test would blight the marriage chances of my other healthy children if and when I had them (a bit like genetic testing can affect insurance etc). It might be easier to claim it is an aberration.

The father has also refused genetic testing though - doesn't this make it more likely to have been a joint decision?

@VestaTilley
but that’s not right: being a feminist is about the liberation of women and girls from the patriarchy, it’s not about “women getting to decide what’s best for them” - that liberal feminist “choice” line has got women absolutely nowhere.

What?? and who decides what's good for women in the long run and decides that my ideas that will better my life are not of any value?
I don't want to change one sort of abusive system for another by those who are not interested in women's rights but rather there own ideas and trying to get power.

I think BrimfulOfBaba has been very tactful to you in her response , OP.

May parents from many different cultures decline genetic testing for many reasons.

There are communities where cousin-marriage is more common (the royal families of Europe in the last generation, for example), but if you are genuinely wanting to make positive steps towards non-racism, non-colonialist thinking, non-discriminatory generalisation, then immediately assuming that her reason is due to fear of her DH, due to culture and nationality, is a big assumption to make.

Think about Malala Yousafzai. Watch the family of Areema Nasreen on the documentary about COVID that was in last night. Cousin marriage has also happened in the Bangaldeshi community - look at Nadiya Hussain whose DH gave up his job and moved to London so that she could pursue her career.

The woman you have contact with may or may not be oppressed by her family, as may other women you mix with. There are issues more prevalent ion different communities, but to go straight to 'culture' as a reason not to get genetically tested... the assumptions are not free of biased suppositions.

@GroundAlmonds - but @goldenharvest has said the exact opposite - that a genetic issue with the wife would lower her in her husband's eyes, but a problem in his genes would not be considered an issue. So that does sound like in some families the woman is blamed for bringing the bad genes to the marriage.

I have seen documentaries on this issue in the past, and it is very sad and I think it is also unavoidable unless you make cousin marriage illegal. The women are as immersed in the cultural reasons for marrying their cousins as the men are. But the women tend to be the ones who suffer most in practice. I would like to know what percentage of the fathers in this situation are subsequently doing at least 50% of the childcare, enabling their wives a chance to return to work full time or to become the main breadwinner. I wonder if things would change, if the men had to deal more directly with the consequences.

I fully agree first cousin marriage should be illegal in this country. In other countries you have to present birth certificates of your parents when you marry. I don't see why we shouldn't have to present birth certificates of parents and grandparents and then the registrar could follow up any anomalies. It is unfair on the unborn child who has no say in their being born, to allow these very risky practices to perpetuate.

@Siepie

Did you watch Born To Be Different on Channel 4?

One of the families on there is white British, and had a daughter with very severe disabilities and health problems. She died when she was a teenager. The couple had previously had a baby with the same condition, who died shortly after birth, and had learned at that point that they were both carriers. They chose to have several more children without any more genetic testing, because they wanted more children together and didn’t want a termination.

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

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

The Queen and Duke of Edinburgh are second cousins.

Just saying...

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.

Some muslims, and most Pakistanis are muslim, see disability as something God decides, so you trust in God to send you a child, if that child has a disability then it is a blessing, God knows you can cope.

Genetic testing goes against this and can be seen as going against God.

Cousin marriage is quite common in Pakistani communities, some people encourage it. In the 1960s / 1970s a cousin from Pakistan might be brought in to the country to marry but as immigration rules got tighter, families got smaller and young people wanted to marry someone similar to themselves, then cousin marriage makes the gene pool smaller so genetic conditions become more common.

Anita Rani did a great documentary about this a few years ago, it will be on YouTube.

I don't think outlawing cousin marriage would work, cousins could still have a Nikah, here or abroad.

I do think genetic testing should become the norm when marrying within the family.

BTW white British atheist but I used to teach equality and diversity (amongst other things).

Regardless of cultural differences, not everyone would want to know. I have friends from a British background who have refused genetic testing. They just preferred not to find out.

Sorry, but you just don't have the right to know somebody's circumstances or reasons for their decision unless they want to share them with you. We can only guess and it's speculation at best. Hopefully it will be sensitive. I also can't see how this is relevant to the current position.

Also, we can't know how you might be able to help this lady without knowing what your profession is.

Not of Pakistani decent myself but I have worked closely with several families in similar situations.

One mum with 3 dc who all had very serious genetically inherited condition told me that she didn't believe that being married to her cousin was in any way connected to their disabilities, because in her family nobody else was disabled, in her culture it's a good thing to marry within the family, and she knew of lots of cousin marriages where nearly all the children weren't disabled so it must be ok.

She believed it is the will of Allah if children are disabled and it's nothing that we can or should try to change.

There was no reason to suspect any form of abuse. She told me her marriage had been arranged but not forced and she was very happy. My guess is she would have been completely against genetic testing because she felt she was married to the man that Allah wanted her to be married to and she had the children that she was destined to have. No amount of science could change fate.

I am from this background, but whilst my family is economically comfortable And educated (University-equivalent educated since 1920s), elements of these traditions persist.
It is not just a Pakistani thing, but a Subcontinent thing. The dominant culture is quite anti-woman, and up until recently widows often had to die with their husbands as they were unwanted by society (Suttee)

Marrying within the tribe was ok centuries ago, when the weakest would be not make it to adulthood, or not be able to work and marry. But today, marriage within a clan or community causes significant health issues.

To OP: If the lady has said that “cousin marriage” leads to her family having weak bones, perhaps she doesn’t realise the true extent of the genetic issues that are prevalent in her family, there could be many other health issues that will remain undetected.

In my opinion: There are logical (to her) reasons for her denial:
-Yes, the blame will be laid at her feet, her husband is of course not responsible for the dodgy genes and the sickly children

• Yes, the husband will be encouraged by his parents to divorce her and marry a fresher, younger woman, probably another cousin, fresh from the homeland.

-This would lead to a tough situation for her, as if she (I don't know the background) has no income or job, and her residence status is dependent on marriage, or her husbands job, she will be in major trouble, as she and the girl children, and the sick child, will be sent home so that a new wife can hopefully bear healthy boys for them.

• This fixation on boy children is not a religious or Islamic issue. It is an Indian subcontinent Issue, and comes from the dominant culture of the subculture where girls have no value. You have the same in Indian and BangladeshI and Nepali families, even living in England. You don’t necessarily have this with arab or iranian families, where a different culture is prevalent.
• if she is sent home with or without her chIldren she is f*** because the value of a divorced woman on the Indian subcontient is nill. Worthless. A woman who is labelled for not bearing healthy children is worse than that. She is the scourge of the family and has brought harm to them. She will have no income or will have to beg from relatives. She will have no home of her own unless she has her own income or family money.

-Since she married and went abroad, the family members who remained have prior claim to family property and will stop her trying to get it.

• There is no state schooling in her homeland so if she is sent home, and is from a rural or poor background, her children will have no schooling and no future

Even if she is not sent home, the results of genetic screening would be evidence of dodgy genes, and would mean that her children are not marriageable (even though the entire family share the genepool, so perhaps that is why she doesn’t want the tests done. If there was an option to have the screening done confidentially, without her husband and in-laws finding out, that may be an option, however it brings only negatives for her.

Thank you for trying to understand her. As a child I argued with my family about these topics, we had many scientific and political debates.
I hope her life gets better and the cycle isn’t repeated for her children. This isn’t a cultural but a class and a feminist issue: her socio-economic and resident status here is the problem. If she had solid residence and her own income or state help, enough to eat and send her children to school, keep them warm and give them a roof, I think she would more willing to dare, she sounds powerless at the moment.

Genetic testing is a really complex thing psychologically, irrespective of cultural issues. As an educated, curious person who prefers to tackle problems head on, I feel that I would want to arm myself with the greatest possible amount of information in order to make any necessary decisions, and as such I struggle to understand why anyone eligible for genetic testing wouldn't want it. But the reality is that lots of people don't. Once you have information about a potentially life threatening or limiting condition, there are often decisions to made, frequently ones where there is no right answer, or, perhaps worse, ones where there is a right answer but you won't know if you made it for decades. The information you acquire may affect, or potentially affect, others who aren't ready to hear it, or who won't make the same decisions you do, or won't approve of yours. The information may affect your attitude or approach to life in ways that can't be reversed and may not be what you expected. Many people don't want to know, or don't want to know yet, what they feel they can't change. People often believe that fate or God play a hand, that what you don't know can't hurt you, or that you can't unknow stuff and therefore need to reach a very high need-to-know threshold before finding out is definitely the way to go. People fear others' attitudes will change towards them if, say, their condition is terminal or life-limiting, if they decide to have children despite knowing about a genetic condition, if they abort affected pregnancies, if they don't decide to abort affected pregnancies... The list goes on and on. It seems like a fairly clear thing to some of us, but it really isn't to others. Some of this may be culturally mediated, some not, some not in the way you probably meant in your OP.

Without knowing exactly what your place is in this picture it's hard to judge, but I don't think feeling concern for the wellbeing of those you deal with professionally can ever be wrong. I also don't think it's wrong to consciously try and be more aware of the role ethnicity plays in other people's life challenges even though it earned you a upthread. The world would be a better place if more white people were aware of the unconscious bias, prejudice and ignorance they bring to their navigation of life and tried to do better. I don't think there is anything else proactive for you to do in this scenario atm, though.

@StopRightThereDavidCopperfield

I appreciate the concern you have raised but please be aware that not all people of Pakistani descent speak Urdu or indeed have cousin marriages. In my experience this is very much dependent on the specific family background.

For your own awareness there are multiple languages spoken by people with Pakistani heritage and Urdu is widely spoken in India too. It seems to me that you are using what little cultural knowledge you have as causation.

The likelihood is that there are other factors at play here and your lack of understanding is not going to help this woman. None of us can explain why genetic testing is not on the table for this woman and her family.

Certainly in my non-muslim, non cousin marrying family, we have an inherited disease, this hasn't stopped us from having our own families and living fulfilling lives while also having to manage this condition.

The filter you are using to assess this situation shows your lack of understanding and your inherent prejudice.

I read the OP as being aware that she doesn't understand all of the factors that are at play for this patient. She can assess the medical factors and she has some common understanding as a woman (and maybe also as a wife and mother?) but she recognises that she comes from a position of ignorance of factors that may be relevant for this Urdu-speaking woman of Pakistani origin.

I see OP trying to chip away at her ignorance, not defend it.

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.

Also - feminism means recognising the structural pressures on women to make or accept certain decisions, and wanting to alleviate those pressures so that women can be genuinely free to make their own decisions.

That doesn't mean berating or belittling other women for not rebelling against the structures they live in, but it also doesn't have to mean reinforcing them.

Hi
There was a BBC programme about this
Called Should I marry my cousin
It is not on BBC IPlayer anymore but I checked and it is still available on vimeo
It is about an 18year old from Bradford , who has family members who have married their cousins and some children had genetic problems
From memory - first cousin marriage happened because the families already trusted each other , and it kept any wealth in the family circle

If NHS services are being used to alleviate some of the suffering caused to the children (and I hope they are) then society is quite entitled to have a view on cousin marriage

That seems reasonable, but I'm not sure how people feel banning the practice would work even if was considered desirable?
Already any number of southern asians travel out of the UK to marry and then return with their new spouse, so surely the suggestion would simply increase this?