One in 14 children who died in England in a four-year period had parents who were close relatives, according to “stark” figures revealed by the first study of its kind.
The figures, published by the National Child Mortality Database (NCMD), based at the University of Bristol, analysed all 13,045 child deaths in England between 2019 and 2023. Of these, 926 (7%) were found to be of children born to consanguineous parents, meaning the mother and father are close blood relatives, such as first cousins.
Although the exact number of children with consanguineous parents across England is unclear, the data clearly shows their overrepresentation within mortality statistics and requires “urgent action”, according to researchers.
The largest geographical estimate of consanguinity currently available is from a large study following the lives of 13,000 babies born in Bradford. It found that one in six of these children had parents who were first cousins, most of whom come from the city’s Pakistani community.
“This is the first analysis of its kind globally looking at consanguinity-related child deaths across a whole country and over a number of years,” said Prof Karen Luyt, the director of the NCMD and lead author of the study. “The NCMD’s dataset is unique: it is timely, complete and comprehensive, and it gives us a clearer insight than we have ever had of the impact of consanguinity on child mortality.”
She added: “Seven per cent of child deaths over the period were of children born to consanguineous parents. These children might have died from any cause, but the data shows us very clearly that they are overrepresented in mortality statistics. Action is urgently required to improve outcomes for this group.”
The report also revealed stark ethnic and socioeconomic disparities in child mortality and consanguinity. Of the deceased children with parents who were close relatives, four in five (79%) were from an Asian ethnic background, with the most common ethnicity being Pakistani, the research found.
Furthermore, almost a third (30%) of children from Asian backgrounds who died had parents who were close relatives, compared with only 5% of children from a Black background, and 1% from a white or mixed background.
Of the deceased children whose parents were close relatives, more than half (52%) lived in the most deprived areas of England, compared with only 5% living in the least deprived areas.
Previous studies have shown that children born to parents who are close relatives have an increased likelihood of experiencing worse health outcomes on an array of measures. For example, children born to these parents are twice as likely to be born with a congenital anomaly, as well as having an increased risk of experiencing issues with speech and language development.
More than a quarter (27%) of all child deaths occurring within this period were related to chromosomal, genetic and congenital anomalies, according to the research. Of children born to parents who were close relatives, almost three in five (59%) of these deaths were due to chromosomal, genetic and congenital anomalies. Of these child deaths due to genetic factors, almost 17% were born to parents who were close relatives.
An NHS spokesperson said: “This report provides further clear evidence on the increased risk of genetic conditions and serious illness that having closely related parents carries and highlights a worrying number of deaths in more deprived areas.
“With hundreds of children losing their lives in recent years, the NHS is running a small pilot which will test whether nurses with specialist training in these complications could prevent the death of vulnerable babies, targeted in areas where close-relative marriage is prevalent.”
