First-cousin Marriage

Question

14:59:00

Asked by

To ask His Majesty’s Government what plans they have to address the health and social impacts of first-cousin marriage, including those relating to women’s rights.

My Lords, NHS England continues to drive improvements in care and access to genetic services for all communities, including through research into the health risks of closely related couples—second cousins or closer—having children. In 2024-25, there was an investment of £1 million in the Genetic Risk Equity project, which supports equity of access to genetic services for the small proportion of closely related couples who have a higher risk of having children with certain genetic conditions.

I thank the Minister for that Answer. Pakistani-heritage journalist Matthew Syed has highlighted the risk-multiplying effect of genetic disorders when cousins intergenerationally marry cousins, as happens in remote Shetland, Orkney, and in the British Pakistani community. Pakistanis account for 3.4% of births nationwide but 30% of recessive gene disorders. The NHS employs staff specifically to deal with consanguinity-related diseases. Given this considerable disease burden, and the NHS cost, will this Government mount a health information campaign warning of this significant extra risk?

I understand the point that the noble Lord is making, but this is a very complex topic in respect of which there is a great lack of reliable data. Any plans for any health information campaign anywhere clearly need to be considered carefully. Perhaps I can reassure the noble Lord that staff from the Genomic Medicine Service are already working with other national projects, such as Born in Bradford and Best Start for Life in Birmingham, to engage with the communities most affected by first-cousin marriage. Of course, any campaign plans for Shetland and Orkney will be a matter for the Scottish Government.

My Lords, I am grateful to the Minister for referring to the Born in Bradford study because 18 months ago, it reported that over the last decade, the number of intra-cousin marriages in the Pakistani community had substantially fallen. The reasons for this were awareness of the risk of congenital abnormalities, young people staying in education longer, and changing family values. This is clearly a successful project. Is it being replicated elsewhere in the UK?

The noble Baroness is right that consanguineous unions are decreasing. While it had the best data, the NIHR-funded study, Born in Bradford, to which the noble Baroness and I have referred, found that between 2000 and 2010, 39% of British Pakistani couples in Bradford were first cousins. However, that reduced by 27% by 2019, for the reasons suggested. Driving change across whole ranges of areas makes a difference, but it is important that we keep this in perspective and make any communications and support absolutely appropriate.

My Lords, surely, this Question is an example of the great value of our genetic science in Britain, and the excellence of the National Health Service in this area. In the Midlands, as the noble Baroness has mentioned, these diseases are common, but the progress we have made in their diagnosis and treatment—and, to some extent, prevention—has been quite remarkable and will continue. I have to add that many of the diseases are extremely rare in such families, and therefore what you could do about cousins in every case would be impossible, but the information being given is exemplary in most cases.

I am grateful to my noble friend for those very informed observations, and I share the assessment that he has made.

My Lords, I welcome the reduction in the number of interrelated family marriages, not only in Bradford; the numbers have also drastically reduced in the Bangladeshi community. I understand that countries such as Saudi Arabia have a significant number of first-cousin marriages. In pursuing the suggestions of the noble Lord, Lord Farmer, about a further awareness campaign, can we also learn something from Pakistan, Bangladesh and Saudi Arabia, or anywhere else where this practice exists? Can the Minister confirm whether she has undertaken any discussions internationally?

I certainly have not, and I am not aware of discussions that have taken place between Ministers or officials in our department and those in other countries. However, I will be very glad to look into that and to write to the noble Baroness.

My Lords, I thank my noble friend Lord Farmer for the Question, and the Minister for the sensitive way in which she is handling it. When we want to look at policy in sensitive areas, surely, we should be led by the data, so I just wonder what the Government’s latest data is. We know that about a decade ago, 6% of congenital defects or anomalies were in children born to first cousins in Pakistani communities, compared to 3% for the wider population. I have seen more recent statistics that say the figures are now 4% and 2%. So, what is the latest data the Government are working with, and what level would those congenital defects have to reach before they were seriously concerned?

I thank the noble Lord for his support in this area, which is indeed sensitive. The statistics he quotes are quite right. It is of course an interesting reflection that the risk of genetic abnormalities does not just double from 3% to 6% in those infants whose parents are first cousins, but also doubles in older white British mothers—I am a bit worried about saying “older” because it is actually over 34. However, the point is well made that it is not just this group. NHS England has recently published guidance to improve the recording of national data on closely related couples, so I hope that noble Lords will find this of interest as we go along. But of course, there has also been much investment in research as well as data development, and I absolutely agree that data is what has to drive us.

My Lords, we know that there are over 6,000 genetically related rare diseases and that, apart from first-cousin marriages, there are other high-risk areas. One, which the Minister just mentioned, is the age of the mother, but this also applies to the age of the father, to people who undergo certain medical technology treatments for fertility reasons, and to mothers who smoke at a higher rate. So, there are lots of other influences that may give rise to genetic-related issues at birth. But the important question is: are there any areas where we can definitively say, “If you do X, Y and Z, or if you do not do X, Y and Z, the incidence of genetic diseases will be reduced”?

The noble Lord is absolutely right that there is a whole range of factors in this area, and I am grateful to him for bringing that before your Lordships’ House. He will of course be aware of the main pillars in the 10-year plan: for example, moving from sickness to prevention, which is key. The noble Lord also mentioned tackling smoking, which we will continue to drive forward. But I wanted to use the Question to highlight that the NIHR is undertaking research projects into improving early recognition, diagnosis and treatment of specific genetic and congenital diseases, particularly in communities with high rates of marriage between close relations. So, to the specific point, I again hope that that will be helpful.

Will my noble friend have discussions with the Foreign, Commonwealth and Development Office about the data for and experience in some of our overseas territories, particularly Tristan da Cunha and St Helena?

Yes; that will be extremely helpful in this regard, and I thank my noble friend.