‘I treat children with life-limiting conditions from cousin marriages – but we can’t talk about it’

The text arrived minutes after I finished talking to a GP in south-east London about the fraught issue of cousin marriage: “Please can I ask you not to mention xxxxx or xxxxx?,” she wrote, mentioning two areas where she practised as a locum.

Moments later the phone rang: “Actually, is it possible for me to remain anonymous – I’m happy to be quoted but it’s just so sensitive. I have to be really careful.”

This nervous response was familiar. Discussing cousin-to-cousin marriage and the genetic disorders that can result, a senior clinician in one of Bradford’s main hospitals told me it was “a definite issue” that neither he – nor any of his colleagues – would speak out about.

The health visitor who had worked in some of the most deprived areas of West Yorkshire admitted there was a “massive problem” involving “loads of kids with all manner of chronic illnesses” but she could not go on the record.

Voicemails and emails to individual councillors and MPs went unanswered. One Bradford council press officer responded saying: “I’ve spoken to the councillors who cover this area and on this occasion, we are not going to provide a comment.” Another, for Kirklees Council, also in West Yorkshire, said: “This is a matter for central government.”

‘Worrying trend’

It seems that the “definite issue” of the “massive problems” of degenerative diseases in children caused by cousin-to-cousin marriage is one that few people are willing to discuss.

One exception is Richard Holden, the Conservative MP for Basildon and Billericay, who recently introduced the proposal in Parliament to ban cousin marriages.

His move follows plans in Norway, Sweden and Denmark to ban the practice. Uzbekistan also plans to outlaw it. In April, the state of Tennessee banned cousin marriage, joining 24 other US states which do not allow first cousins to marry.

Worldwide, the practice of marrying first cousins is thought to affect around 10 per cent of the population. But high rates are also occurring in communities in the UK.

Patrick Nash, an academic who specialises in religious law, suggests that between 38 per cent and 59 per cent of British Pakistanis marry their first cousins, a rate that may be rising. Among Irish Travellers, rates are thought to be high as 40 per cent.

While under the UK Marriage Act of 1949, unions between siblings, parents and children are prohibited, marriage between first cousins remains legal.

The Sexual Offences Act 2003 also criminalises sexual activity with certain family members, but does not include first cousins. Indeed, Queen Victoria and husband Albert were first cousins, as were Charles Darwin and wife Emma.

Richard Holden’s proposal would necessitate amendments to both these laws.

In Parliament, Holden pointed out that the children of first cousins were at greater risk of birth defects and first cousin marriages should be prohibited to protect public health.

“Degenerative diseases are one of the most severe threats to public health,” he said. “Certain diaspora communities have extremely high rates of first cousin marriage. The worrying trend is that this rate has increased significantly from those of their grandparents’s age group.”

But Independent MP Iqbal Mohamed from Dewsbury, West Yorkshire – where the population is more than 40 per cent Asian – argued a ban would be ineffective.

“The reason the practice is so common is that ordinary people see family intermarriage overall as something that is very positive, something that helps build family bonds and helps put families on a more secure financial foothold,” he said.

Yet the health risks to children of cousin marriages – as well as any close family – are well documented. Keir Starmer’s government accepts that the expert advice on the risks of first-cousin marriage was clear.

One briefing into child deaths in Bradford, Birmingham and the London borough of Redbridge found that up to 40 per cent of them may be “due to genetic disorders associated with consanguinity and chromosomal conditions”.

‘It’s tragic for any parent to have a child with a life-limiting condition’

According to Alison Shaw, professor of social anthropology at Oxford University, the child of first cousins carries approximately double the risk of inheriting a serious disorder than one born to unrelated parents.

Those disorders include congenital heart problems, cerebral palsy, cystic fibrosis, polycystic kidney disease or conditions such as von Willebrand disease, which affects blood clotting and causes bleeding problems.

In Pakistan, the prevalence of the blood disorder thalassaemia is seven per cent compared to a global average of one per cent. Many of these disorders require lifelong treatment and can lead to premature death.

The GP in south-east London who requested anonymity agrees. “The most common one I see is Turner syndrome which only affects women and often means a shorter life-expectancy,” she says.

“It’s characterised by a thicker neck and growth problems. The child grows normally until about the age of three but then growth slows down so they tend to be very petite as adults. They can also suffer from heart and kidney problems.

“While it is possible to give birth to a child with one of these disorders if you’re unlucky enough to marry someone with the same genetic abnormality, it’s more likely if the gene is carried in families and you marry someone in your family”, she points out.

“I tend to see these types of problems more where there is a higher population of the British Pakistani community,” she explains. “But then, if we look back at our own history, the Royal family suffered generations of haemophilia because they married close relatives. And it’s impossible to say whether these are inherited conditions unless the patient is tested genetically or the parents tell you they are related.”

She says that “the proposed ban on first-cousin marriage is interesting” but suggests that it is “only one” way of dealing with problems. “I’d like to see more education in the NHS for families who practise interfamily marriage, showing them that testing can be done before they have a child. Because it’s tragic for any parent to have a child with a life-limiting condition.”

‘It was like hitting a succession of ever-higher brick walls’

Precise statistics about cousin marriage are hard to come by. While Holden suggests it may be on the rise, researchers say that, in some areas at least, it may be declining. A decade ago, for example, a Government-funded surveillance project ‘Born in Bradford’ found that 62 per cent of women of Pakistani heritage were in consanguineous relationships. Researchers say that this figure has since dropped to 46 per cent.

Yet the subject seems so sensitive that it is hard to be sure. Journalist and author Matthew Syed wrote recently that his studies on cousin-to-cousin marriage were thwarted when researchers simply didn’t return his emails or calls.

“When I got through to one geneticist, he said: ‘I can’t go there.’ It was like hitting a succession of ever-higher brick walls,” he wrote.

In light of Holden’s proposal, Justice Minister Alex Davies-Jones acknowledged the complexity of the issue, noting that changes to the Marriage Act 1949 and possibly the Sexual Offences Act 2003 would be required to implement such a ban. Currently the government has no plans to legislate. British Asian journalist Iram Ramzan believes this is a mistake.

“It is only by making cousin marriages a criminal offence that we will rid Britain of this pernicious practice,” she says. “It will give vulnerable young daughters of overbearing parents the confidence to say ‘no’.

“If that incurs the wrath of the hand-wringing keyboard warriors who feel that it is culturally insensitive or even racist to do so, then so be it.”

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