Infant mortality: Oldham's "consanguinity issue"

The borough infant mortality rate sits at more than six deaths per 1,000 live births, whereas the national average is around four per 1,000. Previously, The Oldham Owl reported on infant deaths at Royal Oldham Hospital. That marked the start of our investigation into Oldham’s high infant mortality and other health inequalities.

The clinical consensus, to which Oldham Council is signed up, is that there are a number of risk factors in infant mortality, including breastfeeding, substance misuse and consanguinity. Councillor Barbara Brownridge, Labour representative for Chadderton North, said, “It goes much further than just what happens when you go into hospital to have the baby.”

Among other things, she says, “Oldham suffers because we have an issue with consanguinity.”

Consanguinity

Consanguinity is the medical term for blood-related parents. Consanguineous offspring are more at risk of inheriting rare genetic disorders, but let’s try to keep this in perspective: only a small percentage of children of blood-related parents are affected – many have perfectly healthy babies. There’s a chance that blood-related parents will have a baby with a disability that is nothing to do with their genetic profile.

Nevertheless, for some disabilities, a child must inherit two altered recessive copies of a gene, one from each parent. That’s more likely to happen when blood-related parents have children. They share more DNA than strangers, meaning they are more likely to carry copies of the same disability-causing recessive genes.

According to Dr Sankar Subramanian, Senior Lecturer in Genetics at the University of the Sunshine Coast in Australia, offspring of blood-related parents are up to 20 times more likely to inherit recessive genes. 

It’s more common than you think

First of all, consanguineous relationships are completely legal. The late Queen Elizabeth II and Prince Phillip were second cousins, as well as being third cousins once removed. The English aristocracy remains littered with consanguineous parents and children. As in Oldham’s south Asian community, this has a lot to do with traditional values, protecting familial wealth through generations and marrying within the same social or faith community.

According to Oldham Council’s “Reducing Infant Mortality Action Plan”, from 2021 to 2023, almost one in 10 women attending antenatal care in Oldham reported being in a consanguineous relationship.

Consanguinity and infant mortality

Earlier this year, the National Child Mortality Database found that one in 14 children (7%) who died in England over a four-year period had blood-related relatives. The rate is higher in Oldham.

The Child Death Overview Panel (COPD) for Bury, Oldham and Rochdale analysed 126 child deaths from 2021 to 2024, and found that 17 (13.2%) were children of blood relatives who died due to “chromosomal, genetic, and congenital anomalies” and “perinatal or neonatal events”, among other factors. The parental relationship was not known for 25 (19.4%) of the deaths reviewed, meaning the rate could be higher.

The board concluded that: “Health and Wellbeing Boards should work with partners and community organisations to raise awareness of the increased risk of death and illness faced by children born to parents who are close blood relatives.”

To reiterate, the vast majority of consanguineous relationships don’t lead to life-changing disabilities or death. It is one factor among many and the picture is complex and not fully understood.

Oldham Council has said that consanguinity is a reason for the town’s inflated infant mortality numbers, but has it done enough to support blood-relative parents and to spread the word about genetic testing?

Genetic outreach support in Oldham

“You often find that people don’t know what services are out there,” says Arjmund Zaheer, the sole genetics outreach worker in Oldham.

Arjmund works for a charity supporting families and children in Oldham and beyond. Oldham Council funds the role.

“The goal is to engage the south Asian community and increase uptake of genetic services.”

One thing is clear: Arjmund is deeply rooted in the community and genuinely cares about the 48 families she currently supports.

“A lot of these communities are very isolated,” she says. “Language is the biggest barrier. You must think, ‘We’ve got people who have been here for years. Why can’t they speak English? Why don’t they understand?’

But there are families who came to the UK in the early 70s that are still at the beginning of their journey. They need support, and me being able to communicate in a family’s first language often brings comfort and reassurance during times of distress.”

Blood-related couples in Oldham contact Arjmund before, during and after pregnancy to assess the risk of their offspring carrying recessive genes. Most of the families are Muslim and have to weigh their options within a religious framework.

With Arjmund’s support, families in Oldham have received genetic screening tests and talked to genetic counsellors to help them to assess their options.

Arjmund emphasises that her work is sensitive, non-judgemental and culturally attuned.

“I always take guidance from our own religion and culture so that families don’t feel they are making any wrong decisions. Families have to look at the whole picture of the child’s and the family’s life.”

An all-action job

Counselling, GP appointments, coffee mornings, Eid parties, trips to Alton Towers and picnics in the park – Oldham’s only genetics outreach worker has a lot on her plate.

“When you’ve got a child with a disability, it’s like a double disability, because you can’t go out. You haven’t got those social links.”

Arjmund organises group activities to help people to build social links, and supports families one-to-one.

She also spreads the word within the community, visiting Oldham College and University Campus Oldham, and Oldham Sixth-Form College, to educate students about the genetic risks inherent in blood relatives having children.

“Because I’m well known in the community, I can have these sorts of conversations with young people.”

The uphill struggle

Ten years ago, Oldham Council began funding Arjmund’s role. And, in an attempt to spread the word about genetic testing, she contacted local GPs.

“I tried to go to their practice team meetings to talk to them about the work I’m doing, but it didn’t go anywhere,” she says. “And anytime I send a parent to the GP to talk about their problems, the GP says, ‘I don’t know what you’re asking’. I only get results if I go with the patient to the GP.”

Approaching services can feel overwhelming, especially for people who are already isolated. This came into sharp focus when Arjmund went to the GP with one of her clients.

“My client talked about pain and headaches, and when they got to the third thing, the GP said, ‘Nope, you’ve done two. If you want to talk about another thing you need another appointment.’

That’s not right, because that third thing might be causing the patient the most pain or distress,” she says. 

Shouldn’t we just ban consanguineous marriage?

Earlier this year, Dr Luke Evans, Conservative MP for Hinckley and Bosworth, sponsored the First Cousins (Prohibited Relationships Bill). If passed, it will ban sexual relations, marriage and civil partnerships between first cousins.

In 2024, Richard Holden, Conservative MP for Basildon and Billericay, sponsored the Marriage (Prohibited Degrees of Relationship) Bill, which would have prohibited marriage between first cousins.

Mr Holden’s Bill was never likely to become law, but in the only Commons exchange on it, it was strongly opposed by Iqbal Mohamed, Independent MP for Dewsbury and Batley.

“I do not think such measures would be effective or enforceable,” Mr Mohamed said. “A much more positive approach would be to facilitate advanced genetic test screening for prospective married couples, as is the case in all Arab countries in the Persian gulf, and to run health education programmes targeting those communities where the practice is most common.”

History tells us that banning relationships does little to stop them, and a ban carries the risk of further isolating already marginalised communities. Another problem with legislation is that it implies that the state, or state agencies, have the whole picture in front of them – all the risk factors, all the evidence – when they do not. Prohibition is based on a simple premise, which is rarely the way to deal with a complex, risk-based problem. It is based on the premise that it will eliminate risk, which it will not.

As Arjmund shows – we need more like her – the practical way forward is to manage the risk rather than pretending that you can eliminate it.