Tazeen Ahmad, reporter for When Cousins Marry writes about her experiences making the film, and relates her own family history.
Sitting in the family living room, I watched tensely as my mother and her older brother signed furiously at each other. Their row was yet another who-said-what-about-whom. Although almost completely without sound, it was high-octane and at times vicious: like most siblings they knew how to press each others buttons.
Three of my uncles may have been born deaf but they certainly knew how to make themselves heard. Eventually, my uncle caved and fondly put his arm around her; in seconds she relaxed too. My mum has always had an extra special place in her family because she was the first girl to live beyond childhood. Five of her sisters died one after the other as babies or toddlers. It wasn't until many years later that anyone would work out why so many children died in one family and how three boys came to be born deaf. Today though there is no doubt among us that this tragedy occurred because my grand-parents were first cousins.
'Cousin marriages lead to an increased chance of having a child born with a genetic disorder'
My family are not alone. Here in the UK more than 50 per cent of British Pakistanis marry their cousins. In some parts of the country the figure among ethnic Pakistanis is even higher. Back when my grandparents were having their children the medical facts were not established; today in Britain alone there are more than 70 published scientific studies which show cousin marriages lead to an increased chance of having a child born with a genetic disorder.
'The children of first cousins are ten times more likely to be born with recessive genetic disorders'
Studies also show that the chances of having a child born with birth defects double if you are first cousins and that 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.
Another major report carried out in Britain in 2008 found that one third of all children suffering from rare genetic diseases are British Pakistani. Despite this, the tradition continues among East-African, Middle-Eastern, and Bangladeshi communities in the UK, with British Pakistanis practising this custom the most.
'Cousin marriages are on the increase'
In Bradford alone, 75 per cent of British Pakistanis are married to their cousins. In the Dispatches programme, I met Saeeda and Jalil Akhtar who are first cousins and have six children. Three of those children suffer from an extremely rare genetic disease called Mucolipodosis Type IV. This stops their bodies from getting rid of waste products properly, affecting everyday brain functions from vision to movement. Mohsin, their second eldest is 17 and now blind. He wanders around his home aimless and helpless, often crying in frustration because he can't do what other teenagers can.
Mohsin's two sisters, 13-year-old Hina and 11-year-old Zainab, have the same condition and cannot see or hear. Their mother, Saeeda, has to do everything for them. She spoon-feeds them, dresses them and I watched her as she calmed her distressed children over and over again. She says wearily, 'How long can I keep looking after these children in this way?'
Why cousins marry
Among Pakistanis, cousins have been marrying cousins for generations. In South Asia, the custom continues to keep the family network close and to ensure property and financial assets remain within the family.
Here in Britain, communities also do it to strengthen their ties to the sub-continent, so many British Pakistanis will often marry their cousins from abroad. However, some young people told us that they sometimes face extreme pressure from their families to marry their first cousins. I met 'Zara' who was born and raised in the UK. When she was 16, she was pressurised into marrying her cousin from Pakistan. She says 'I was emotionally blackmailed, my husband's family went on a hunger strike, they said we are going to commit suicide and that it was matter of their honour because I had been engaged to my cousin for a long time.'
Zara's children are all healthy and while she still lives with her husband, the marriage is deeply unhappy so she would only speak to us anonymously. Outside a mosque in East London, other young people also talked about the pressure in Pakistani families to marry a cousin.
'An attack on Pakistani culture'
However I also spoke to some people in cousin marriages who felt there were great benefits and questioned if it was yet another aspect of their culture that was coming under attack.
This sentiment has been echoed several times during the making of this Dispatches programme. It's a subject that has provoked a defensive and sometimes hostile reaction every time we've touched upon it. We spoke to dozens of families who refused to talk about it on camera and we were told frequently that even to discuss the issue was an attack on Pakistani culture or worse still, Islam.
The Cost to the NHS
In the absence of open discussion, the health risks speak for themselves with the cost to the NHS running into many millions. There is no doubt that this is a major public health issue that also has huge implications for other services. However during the Dispatches investigation we found no efforts to introduce any kind of national awareness-raising campaign.
MPs Decline to Be Interviewed
We wanted to find out why so we approached 16 MPs with a significant number of British Pakistani constituents for interview – every one of them declined. We also asked 30 MPs with high populations of British Pakistanis in their constituencies to give their views in a short survey. Only one, who wanted to remain anonymous, responded telling us that anyone who tried to talk about it risked being attacked politically. Former Labour MP Ann Cryer believes it is political correctness that is preventing politicians from raising the subject. 'It's fear that they'll be accused of racism or demonization', she says, adding that she too has been lambasted for discussing it in the past.
However this blanket of silence has meant that it is not just British Pakistani families who are suffering. Wayne and Sonia Gibbs are white and first cousins once removed. They had no idea that marrying a close relative could lead to problems. Their daughter Nicole suffered from Juvenile Osteopetrosis – a genetic disease that causes the bones to thicken and crush the body's organs. Nicole lived only until she was two. The couple were told they both carried the recessive genes that caused Nicole's illness. They wanted more children but they decided to have genetic counselling first. They have two healthy boys today. Sonia feels that people considering a cousin marriage should do the same. 'It will save them so much heartache in the long run,' she says, 'At least then they know they are going to have a healthy child.'
To me the solution is simple: it's time to ring the alarm bells loud and clear. In Birmingham, one GP practice has already decided to take radical action. The doctors at the surgery have campaigned heavily in their locality to stop cousin marriages. They've introduced genetic screening and testing for all their patients and they now claim that very few cousin marriages take place in their local community. 'You can't test for everything,' says Dr. Rizwana Aldina, 'So the sensible thing would be to say: if you can avoid these partnerships, then it's actually better.'
'People, nationwide, should be able to make an informed choice about the risks involved'
The conclusion some will draw is that cousin marriages should be banned. I disagree. As a British Pakistani Muslim I am entirely aware of the sensitivities around this – culturally, religiously and racially. But I do believe that people, nationwide, should be able to make an informed choice about the risks involved and the options available to them, be they genetic screening, counselling or carrier-testing.
At the very least there should be leaflets in doctors' surgeries, education campaigns in schools and a national awareness-raising exercise.
If this were any other health issue then politicians would have be out in full force. In the event, they are resolutely silent. And as they stay silent, children are continuing to be born with terrible, preventable disabilities that are devastating their lives and those of the people who love and care for them.