I SHOULD MAKE UP AN “EWWWWW” CATEGORY…
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 11:11 AM on 23rd August 2010
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.
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.
* Dispatches: When Cousins Marry is on Channel 4 at 8pm tomorrow.
In response to this story a Department of Health spokesman said: ‘The risk of having a child affected by a genetic disorder following cousin marriage is a complex and sensitive issue that is best discussed and assessed with specialised genetics services.
‘Through genetic services the NHS runs local initiatives aimed to raise
awareness of the risks associated with cousin marriage.’
Thanks to BNI for posting this on her blog here: