cousin marriage linked to birth defects in UK

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The greatest taboo: One woman lifts the lid on on the tragic genetic consequences of when first cousins marry

By Tazeen Ahmad

Last updated at 1:10 AM on 22nd August 2010

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Sitting in the family living room, I watched tensely as my mother and her older brother signed furiously at each other. Although almost completely without sound, their row was high-octane, even vicious.

Three of my uncles were born deaf but they knew how to make themselves heard. Eventually, my uncle caved in and fondly put his arm around his sister.

My mum has always had a special place in her family because she was the first girl to live beyond childhood. Five of her sisters died as babies or toddlers. It was not until many years later that anyone worked out why so many children died and three boys were born deaf.

Today there is no doubt among us that this tragedy occurred because my grandparents were first cousins.

Tazeen Ahmad files a courageous and controversial report on one of the great taboos of modern Britain

My grandmother’s heart was broken from losing so many daughters at such a young age. As a parent, I can’t imagine what she went through.

My family is not unique. In the UK more than 50 per cent of British Pakistanis marry their cousins – in Bradford that figure is 75 per cent – and across the country the practice is on the rise and also common among East African, Middle-Eastern and Bangladeshi communities.

Back when my grandparents were having children, the med­ical facts were not established. But today in Britain alone there are more than 70 scientific studies on the subject.

We know the children of first cousins are ten times more likely to be born with recessive genetic disorders which can include infant mortality, deafness and blindness.

We know British Pakistanis constitute 1.5 per cent of the population, yet a third of all children born in this country with rare recessive genetic diseases come from this community.

Despite overwhelming evidence, in the time I spent filming Dispatches: When Cousins Marry, I felt as if I was breaking a taboo rather than addressing a reality. Pakistanis have been marrying cousins for generations.

In South Asia the custom keeps family networks close and ensures assets remain in the family. In Britain, the aim can be to strengthen bonds with the subcontinent as cousins from abroad marry British partners.

Some told us they face extreme pressure to marry in this way. One young woman, ‘Zara’, said when she was 16 she was emotionally blackmailed by her husband’s family in Pakistan who threatened suicide over loss of honour should she refuse to marry her cousin.

She relented and lives in a deeply unhappy marriage. But others told me of the great benefits of first cousin marriage – love, support and understanding. To them, questioning it is an attack on the community or, worse, Islam.

At a Pakistani centre in Sheffield, one man said: ‘The community feels targeted, whether that be forced marriages or first-cousin marriages. The community is battening down its hatches, not wanting to engage.’

As a British Pakistani, I am aware of the religious, cultural and racial sensitivities around this issue and understand why people would be on the defensive when questioned about it.

At times I was torn between explaining the health risks while privately understanding the community’s sense of being demonised.

But I have also grown up in a family that has suffered the medical implications and strongly believe that people should have the choice to make an informed decision.

Throughout I had to remind myself that this is a health story – nothing more. It is not about religion or cultural identity. It is about avoidable suffering such at that experienced by Saeeda and Jalil Akhtar, whom I met in Bradford.

They are first cousins and have six children, three with the genetic disease mucolipidosis type IV. This stops the body getting rid of waste properly and affects brain functions controlling vision and movement.

Mohsin, their second eldest, is 17 and blind. He wanders aimless and helpless, often crying in frustration. His sisters Hina, 13, and Zainab, 11, have the same condition. They live in almost complete darkness.

Saeeda is worn down from years of round-the-clock care. She spoon-feeds them, dresses them and fears for them. Neither she nor her husband can quite accept that their familial link is the cause of this pain.

This is a major public health issue that has huge implications for other services. The cost to the NHS is many millions of pounds.

On average, a children’s hospital will see 20 to 30 recessive gene disorders a decade, but one hospital in Bradford has seen 165, while British Pakistani children are three times more likely to have learning difficulties, with care costing about £75,000 a year per child.

However during this investigation we found no efforts to introduce any national awareness-raising campaign. Why?

We approached 16 MPs with a significant number of British Pakistani constituents for interview – every one declined. We asked 30 MPs with a high population of British Pakistanis

in their seats to give their views in a short survey. Only one, who wanted to remain anonymous, responded, saying anyone who tried to talk about it risked being attacked politically.

A lone voice was Ann Cryer, former Labour MP for Keighley, near Bradford, who said ‘fear of being accused of racism or demonisation’ prevented politicians speaking up.

It is not just British Pakistani families who suffer. Wayne and Sonia Gibbs are white and first cousins once removed. They had no idea this could lead to problems. Their daughter Nicole had juvenile osteopetrosis, a genetic disease that causes the bones to thicken and crush the body’s organs. Nicole died aged two.

The couple now know both carry the recessive genes that caused Nicole’s illness. They wanted more children – but had genetic counselling first. They have two healthy boys today.

I have travelled nationwide, meeting doctors and families whose lives are full of pain. To me the solution is simple: Ring the alarm bells loud and clear.

In Birmingham, one GP practice has taken radical action. The doctors have campaigned heavily to stop cousin marriages. They have introduced genetic screening and testing for patients, starting at 16, and now claim that very few cousin marriages take place there.

My mother tells me that, long before I was born, her siblings and their cousins decided their tragedy would never recur.

The conclusion some will draw is that cousin marriages should be banned. I disagree. But people must be able to make informed choices about the risks involved and options available, be they genetic screening, counselling or carrier-testing.

At least there should be leaflets in doctors’ sur­geries and school campaigns.

Meeting the families in the programme upset me greatly. Every day for them was an uphill struggle, mostly because their children needed so much help and this put enormous stress on their family lives.

Yet this was avoidable. If this were any other health issue, politicians would have been out in force. But they are silent and as a result children continue to be born with terrible, prevent­able disabilities that are devastating their lives and those of their loved ones.

Read more: http://www.dailymail.co.uk/news/article-1305078/TAZEEN-AHMAD-Three-uncles-deaf-Five-aunts-died-babies-Why-My-grandparents-cousins-married.html?ito=feeds-newsxml#ixzz0xJMpSs9K

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on a related note:

Son flees 'honour killing bloodbath' after parents were shot dead for refusing to let daughters marry their cousinsBy Daily Mail Reporter

Last updated at 11:58 AM on 10th August 2010

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A British couple were shot dead in a 'honour killing' after they refused to let their two daughters marry their nephews, a family friend has revealed.

Gul Wazir and his wife Niaz Begum were eating breakfast when three men burst in and carried out the bloody 'revenge' attack.

Their son only escaped because he was upstairs taking a shower. Hearing the gunfire he rushed downstairs to find a bloodbath and his parents dead.

It has emerged that the row erupted when the taxi driver was asked by his Pakistan-based brother Noor if he would allow his daughters to marry his sons Awal Zamir and Rehman, who is believed to be one of the gunmen.

Marriage dispute: The Wazir's home in Birmingham. Their son Mehboob survived the 'honour killing' attack and is in a stable condition in hospital

But the daughters - who had stayed at home in Alum Rock, Birmingham - refused the proposals.

The aborted marriage was discussed in a grand jirga, or assembly of the village, which ended with an order for the Wazirs to pay the equivalent of £18,800 to their nephew in compensation.

But although both parties agreed with the decision, two days later, Rehman allegedly shot his uncle and aunt at the house they were staying at.

Mr Wazir was visiting relatives in Salehana, a remote village in Nowshera province, with his wife and 28-year-old son Mehboob Alam, when the approach was made.

Today family friend Hassan Ahmed said Mr Wazir refused the offer because his daughters were worried about the language barrier and cultural differences.

As a result, a meeting of four village elders was called and they agreed with the Briton and his wife.

Mr Wazir thought the matter was closed but on Friday three men sprayed bullets at the couple as they chatted over breakfast, Mr Ahmed said.

Their son was forced to run for his life after finding his parents dead.

Mr Ahmed added: 'This was a revenge killing. Everybody has arms on them in this particular area. It's terrible.

'I think the family are after justice now. Their mum and dad have been murdered in cold blood for no real sensible reason and it is very important that the British Government put pressure on the Pakistani police and government to do something about it.'

Gul Wazir and wife Bagum were gunned down in the village of Salehana in the remote and dangerous Nowshera province

West Midlands Police said it was investigating a threat made against one of Mr Wazir's relatives, believed to be another one of his sons, in Birmingham on Friday.

Mehboob Alam has since returned to the UK, while his sisters are described as being safe.

In a similar case last May, Mohammad and Pervaze Yousaf, from Nelson, Lancashire, were gunned down in a graveyard in north-east Pakistan after the arranged marriage of their son Kamar to his cousin broke down, sparking a family dispute.

Councillor Eileen Ansar, of Pendle Borough Council, is related to the Yousaf family.

She said she was concerned about the practice of marrying off British women abroad.

The 45-year-old added: "The girls do it because they are going through the motions and they will lose the respect of their family if they don't go through with it.

'If you are moving well-educated girls from the UK to marry men who are not educated in Pakistan, then it's not going to work as they have nothing in common.

'The families themselves should be looking at their futures as well. The parents should be considering a lot more what they are doing because it's an absolute tragedy what's happened.'

The Foreign Office said it distinguished between forced and arranged marriages. A spokeswoman said its dedicated forced marriages unit dealt with 1,700 cases a year.

It had the ability to send officers to Pakistan, India and Bangladesh to rescue people seeking a way out of a forced marriage, she said.

http://www.dailymail.co.uk/news/article-1301826/Son-flees-honour-killing-bloodbath-parents-shot-dead.html

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In South Asia the custom keeps family networks close and ensures assets remain in the family.

This is and was very common among the South Asian elites. The rajas and nawabs and those guys. How the practice spread to the UK is curious, given the fact that the immigrants the UK recieved from the Indian subcontinent were not even remotely elite. The first time there has been any significant out-migration of the educated Indian with money post-independence is right now and the destination is the US.

[Dakine10 5,452]

That reminds me, good thing they just caught Arizona fugitive John McCluskey before he and his wife/cousin had a chance to procreate. I'm not sure what is the opposite of being born with a silver spoon in your mouth, but it surely would have applied to any kids those 2 had.