The tragic truth about cousin marriages: They can cause a litany of genetic illnesses and they're a key factor in the deaths of two children a week in Britain, so why is it taboo to talk about them, asks SUE REID

  • The World Health Organisation insists that attempts to stop consanguineous marriage are ‘undesirable and inappropriate’
  • The stance of local councils in Britain, including multi-cultural Oldham in Lancashire, tallies with this view
  • In the former cotton mill town, 20 babies born each year have a consanguinity-related disorder, of whom 11 live with chronic disability
  • Yet the Health and Wellbeing Board overseen by Oldham council recently said cousin marriage is an ‘integral part of cultural and social life’

Blessed with long wavy hair and dark brown eyes, Hiba Maroof is a beautiful teenage girl. She is softly spoken with a hint of the Yorkshire dialect so distinctive to Bradford, where she was born and raised.

Her life stretches ahead of her, yet at the age of just 18 she is already discussing with her family whether she should have an arranged marriage, and whether her future husband should be a cousin.

For Hiba comes from the city’s British-Pakistani community, in which around 60 per cent of mothers are married to their cousins according, to a major academic study.

Hiba Maroof (centre) with her parents, Maroof and Nuzhat, at home in Bradford

Hiba Maroof (centre) with her parents, Maroof and Nuzhat, at home in Bradford

Her uncle, Younis, hopes that Hiba does so and follows his family tradition.

Indeed, four of his own five children have wed close relatives. However, Hiba’s father is unsure. And her mother is very much against her daughter marrying such a close relative because her own first marriage — to a cousin — ended in divorce.

Hiba, single and a student at the University of Leeds, faces a common dilemma. Her story came to public attention because she featured in a BBC documentary called Should I Marry My Cousin?, which looked at the custom of cousin marriage.

Relationships described as ‘consanguineous’ are those between couples who are at least second cousins or more closely related. The practice has been legal in Britain for more than 400 years, but is considered one of society’s last taboos.

In British Pakistani and Bangladeshi communities, marriage between cousins is designed to strengthen the family and keep wealth intact.

But there are massive health risks involved for the children of such couples. And when they are tragically born with disabilities, it is taxpayers who are left to pick up the huge costs of their NHS treatment, which can run into millions over a lifetime.

New official figures shown to the Mail reveal a worrying picture across England. Shockingly, cousin marriages are a key factor in an average of two child deaths every week.

This figure is derived from the fact that a total of 545 boys or girls born to closely related couples have died in childhood during the past five years, according to the Department for Education, which collates data from Child Death Overview Panels in every council area. (It is the job of these panels to examine the deaths of any child under the age of 18.)

Thousands more children of consanguineous marriages survive, but with appalling physical or mental problems. These include blindness, deafness, blood ailments, heart or kidney failure, lung or liver problems and a myriad of often incurable and complex neurological or brain disorders.

According to a report for the BBC’s Newsnight, British Pakistanis are 13 times more likely to have children with genetic disorders than the general population.

They are responsible for three percent of all births, but produce just under a third of all British children with such health problems.

In Birmingham, around one in ten children from first cousin marriages either dies in infancy or develops a serious life-long disability caused by genetic ailments, according to health officials in the city, where half the mothers of Pakistani origin are married to a close relative.

Meanwhile, a research document by the NHS-funded Enhanced Genetic Services Project reveals that in Birmingham in 2009-2010, the combined infant stillbirth and death rate ‘definitely or probably’ due to genetic disorders inherited from Pakistani cousin parents was 38 times higher than that among white European babies in the city.

The report — one of the most thorough into this health and social problem — says: ‘Almost a third of the affected children die before five years of age.

Most of the survivors suffer chronic disability, and they are cared for by their families, posing tremendous emotional and financial strain.’

Up in Bradford, where teenager Hiba Maroof lives, doctors and nurses have told me paediatric wards look after numerous children who are unable to speak, and are fed through tubes.

For Hiba comes from a British-Pakistani community, in which around 60 per cent of mothers are married to their cousins

For Hiba comes from a British-Pakistani community, in which around 60 per cent of mothers are married to their cousins

Meanwhile, the city’s special schools struggle to cope with the huge numbers of pupils with learning difficulties.

In the past, a consultant paediatrician called Dr Peter Corry at Bradford Royal Infirmary, said he and his team had identified 140 different gene disorders among local children. He estimated that a typical district of England would expect to see between 20 and 30.

Many children who die, or whose health is seriously damaged, are born to British-Pakistani families just like Hiba’s, which itself has a genetic history of acute deafness, and the blood disorder thalassaemia.

This disease can kill, and in its severest form is treatable only by a lifetime of hospital transfusions.

The problem is that babies born in cousin marriages can suffer what are called ‘recessive’ genetic disorders, associated with severe disability and early death.

These disorders are caused by variant genes. If you inherit one variant gene you will not fall ill or die. If, however, a child inherits the same variant gene from each of its related parents, it is at higher risk of a health problem.

The likelihood of a couple having the same variant gene is a hundred to one in the general population.

In cousin marriages, that can rise to one in eight because those who are related to each other are more likely to carry the same faults in their DNA.

Yet despite the dangers — and the huge cost to the NHS — according to the BBC, it is estimated that 55 per cent of couples of Pakistani heritage in the UK are in cousin marriages.

Seven years ago, leading geneticist Professor Steve Jones, of University College London, controversially warned that what he called ‘inbreeding’ in Britain’s Muslim communities threatened the health of children.

What the medical experts say about cousin marriages 

Given the health problems faced by many children of related parents, some will feel it’s justifiable to ask if such marriages should be allowed in a first-world country.

Others will think it’s unacceptable to interfere in the practices of ethnic communities in Britain.

The World Health Organisation, for instance, insists that attempts to stop consanguineous marriage are ‘undesirable and inappropriate’.

The stance of local councils in Britain, including multi-cultural Oldham in Lancashire, tallies with this view. In the former cotton mill town, 20 babies born each year have a consanguinity-related disorder, of whom 11 live with chronic disability, while the rest may not survive beyond the age of one.

Yet the Health and Wellbeing Board overseen by Oldham council recently said cousin marriage is an ‘integral part of cultural and social life’ and attempts to try to stop the deep-rooted practice were ‘unlikely to succeed’ anyway.

The view that society should not interfere in a custom of some ethnic communities wins a degree of sympathy from even those at the top of the medical profession.

Dr Anand Saggar, one of the country’s most eminent geneticists and an NHS consultant, told me: ‘One shouldn’t sound judgmental about consanguinity. Trying to ban such marriages, as some politicians want, is an inflammatory approach.

‘The whole issue is fraught. But, believe me, like any parents, these people don’t want to have an abnormal child if they have a choice. The pain for them if they do so is acute.’ Dr Saggar runs two clinics where he offers genetic testing to cousin couples to establish their risks of having a sick child.

One is in Harley Street, where he sees clients (often before they conceive) from all over the world, including countries where consanguinity is commonplace, including Saudi Arabia, Qatar, the United Arab Emirates and, now, the UK.

At his NHS clinic at St George’s Hospital Trust, South London, his patient list is dominated by less well-off couples who have had a child die, or be born with a medical problem. They have often been referred by GPs or midwives to find out how to avoid the same tragedy with future children.

The couples who visit Dr Saggar’s clinics are ‘very often Muslims, but not exclusively’. Some opt for no medical intervention, saying it is the will of God whether or not they have a damaged baby.

Others choose IVF, where the husband and wife create an embryo which can be pre-screened before it is selected for implantation in the mother’s womb, to ensure it has no genetic defect. Some couples already expecting a baby with an inherited problem are offered a termination. But it is their choice.

‘If you explain to them the options available in ways they can understand, they are willing to listen and be tested so we can find ways of them avoiding having an affected child,’ says Dr Saggar, 59, a Hindu whose family emigrated to Britain from Africa.

‘It is rude and racist to say these people don’t want to learn. We should be sensitively informing them, not restricting who they marry.’

Professor Neil Small, of the University of Bradford, was a researcher in a project called Born In Bradford.

It was set up to discover why so many of the city’s children die or have disabilities, and tracked 13,500 babies, of all ethnic backgrounds, born at Bradford Royal Infirmary between March 2007 and December 2010.

It is one of the most ambitious health research projects in the world.

Research from the project was published in medical bible the Lancet in 2013. It showed that for every 100 babies born to unrelated couples, around three have a genetic ailment, while for every 100 babies born to closely related couples, six do so. In other words, the risk is doubled.

Today, Professor Small believes changing attitudes to cousin marriage among young Muslims, tighter immigration controls on bringing spouses into the UK, and efforts to inform families sensitively about the health consequences may, one day, reduce the disabilities and stillbirths. As yet, he told me, it is unclear if this will be successful.

He has explained in interviews about the study: ‘It is not our intention to counsel couples about whom they choose to marry, but we do want to ensure that couples are aware of any risks so that they can make informed choices.’

 

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Figures released recently by Bradford’s Child Death Overview Panel bear out his fears. They show that of 670 babies and children whose deaths were reviewed between 2008 and 2017, 62 per cent were born to parents of South Asian — predominantly Pakistani, Bangladeshi or Indian — heritage, where cousin marriage is common. The panel says this is an ‘over-representation’ since the proportion of children under 18 who are of South Asian heritage in the Bradford area is just 37 per cent.

Former Labour MP Ann Cryer, who represented Keighley near Bradford, has bravely highlighted this issue, but was attacked by the Left for calling for an end to such ‘medieval’ unions.

She said: ‘It’s not fair to the children or to the NHS which has to treat them. If you go into a paediatric ward in Bradford or Keighley, you will find more than half the kids are from the Asian community.’

Philip Davies, Tory MP for another Yorkshire constituency, Shipley, has gone further. Controversially, he has questioned the state costs of treating sick children of related parents, and said to the Mail this week: ‘Isn’t it time that first-cousin marriages were outlawed in Britain?’

Britain’s first female Asian peer, Baroness Flather — who describes herself as a ‘Hindu atheist’ — also told us: ‘Such marriages are partly [pursued] out of the conformist desire to keep all property within the family, partly out of a wish to bring over a relative to marry in this country. There is so much disability among the children. You go to any such family and there will be four or five children, at least one or two of whom will have some health problem.

‘Effectively, we have imported a medieval convention that should have no place in modern society.’

She has pointed out: ‘The term “inbreeding” is an unpleasant one, but it is an exact description of what is happening in 21st-century Britain, despite everything we know about genetics.

‘It is little wonder, then, that more than six per cent of all children born in Bradford have severe disabilities, including blindness, deafness, and neuro-degenerative conditions. Yet to set out these truths is to invoke the fury of the politically correct brigade, who refuse to consider anything that might intrude on their carefully constructed fantasy of Utopian multi-culturalism.’

Indeed, the whole issue is so highly contentious that few dare mention it. NHS doctors and nurses are reluctant to speak out for fear of being branded racist.

Last summer, however, an east London council broke ranks. Health officials in the multi-cultural borough of Redbridge said one in five of the 160 child deaths investigated between 2008 and 2016 were ‘attributable to consanguineous relationships’.

As a result, the Mail has investigated the problem, asking every local council in England for their own figures for child deaths linked directly to cousin-marriages.

Fourteen out of the 150 responded, the majority refusing to answer, claiming they did not hold the crucial data.

Of those that gave us figures, it was revealed that 95 children of consanguineous unions have died in these 14 areas alone over the past five years. They included Sheffield (26), Newham (19), Derbyshire area (11), Dudley in the West Midlands (9), the councils of Hammersmith and Fulham, Kensington and Chelsea and Westminster (14) and Slough (5).

A community nurse working in Redbridge told me that he has helped to care for many of the disabled children.

He said: ‘A terrible burden is put on the cousin parents who have, often unwittingly, given birth to a baby with a lifetime of tricky health problems. Their own relationship suffers.

‘They often put the baby in the corner of the room, try to ignore it, and struggle to get on with their lives because there is nothing else they can do.

‘They often go on to have more disabled children by playing Russian roulette with genetics.’

A retired NHS nurse from the same area has added: ‘The children are being kept alive by the skills of the NHS, which is already over-stretched. In the paediatric wards of east London hospitals, I have seen the result.

‘Intensive care beds are being taken up by terribly disabled babies born to related parents.

‘They will never be out of nappies. Some will never speak beyond a wail. They have such grave problems that they will cost the state thousands upon thousands over their lifetimes.’ Another medic recently complained on an internet forum discussing the issue: ‘The problem is no one dares say: “No, stop marrying cousins” because it is politically incorrect to do so.’

In Bradford, health workers have told me that disabled teenagers are daily seen in public parks being pushed in wheelchairs. They are taken there for fresh air by council workers from special schools and day-care centres.

One explained: ‘These youngsters are trapped in broken bodies.

‘While society can’t avoid some misfortune, we know — through medical advances — how we can reduce it.

‘Some families have come from three generations all married to cousins. The offspring of these marriages struggle with life, are often in pain, and die young, too.’

Thankfully, this taboo subject is increasingly debated among young Asians on internet forums.

A young Muslim man called Ali wrote recently on one: ‘The reason couples inbreed is because their parents want their children’s earnings to remain in the family.

‘Except for my own research on the internet, I have never heard or been told about the dangers from national TV or my family elders.’

Luckily, 18-year-old Hiba Maroof from Bradford is increasingly aware of the dangers as she ponders whether to marry a cousin.

‘Children shouldn’t be born disabled if it can be avoided,’ she says in the TV programme about the issue. ‘I’m not going to lie, the genetic talk scares me.’

In the documentary, Hiba visits two cousins who married each other — Iftacan and his wife Minaz, who live in Newcastle. They have three children, two of whom are severely disabled.

The eldest, a daughter called Fatima, 20, cannot speak. The camera follows her around the small terraced house as she groans and rolls her eyes continually.

A younger son, Rohan, 12, is autistic. He sits on a sofa motionless, mumbling repeatedly to his father that he wants the sky to turn blue.

Yet both parents are reluctant to blame their children’s problems on their cousin marriage.

Iftacan says it may just be the luck of the draw.

A lot of people who marry but aren’t related have ‘kids with autism’, he reasons. For her part, Minaz muses that ‘God may have chosen’ to put them in this situation. Hiba goes to see two potential suitors — her young male cousins — in Pakistan. She struggles to have a conversation with the two boys, university students who appear to like the idea of marrying her and coming to live in Britain.

Back home, Hiba deals with the problem in a practical way.

Sensibly, she goes for genetic testing at a specialist clinic and finds she is not a carrier of either the hearing disorder or blood complaint thalassaemia which run in her family. Even if she opts for a cousin marriage, this means she should be able to guarantee that she will not have a disabled baby.

Yet, in any case, as the documentary later reveals, she decides not to marry either of the cousins.

Plenty of young women of Asian heritage, though, are not as careful as her — or allowed to be by strict parents who favour marriage within the family.

Even more worryingly, the number of children damaged by consanguinity is predicted to increase as the birth rate in ethnic communities goes up.

In Yorkshire and Humber (embracing Bradford, Kirklees, Leeds, Sheffield, and Rotherham) doctors are having to deal with 600 cases a year — a number they expect to rise to 2,400 a year by 2031, according to documents published by public health officials in the area.

The same documents say the annual State cost of looking after a child with severe learning difficulties or a chronic disability linked to consanguinity is £50,000, reaching millions over a full life-span of medical and other care.

With all this in mind, it is difficult not to conclude that though the intentions may be understandable, marrying your cousin is a tradition that can come at a high price for all concerned, especially for those children condemned to an early death, or a life of profound disability.

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