asked Her Majesty’s Government:

What steps they are taking to address genetic problems arising from marriages between first cousins.

My Lords, cousin marriage is a cultural practice common to a number of ethnic communities. The risk of having a child affected by a genetic disorder following cousin marriage is a complex and sensitive issue. The Department of Health has funded a number of initiatives since the 2003 genetics White Paper to increase the understanding and awareness of the possible risk in affected communities.

My Lords, I thank the Minister for that Answer. Given the general tolerance in the population of risk factors in birth, does he agree that it would be wrong to castigate cousin marriages, but that somewhere between the White Paper and the Harper review of a couple of months ago we have lost sight of the importance in this field, first and most important, of the training of genetic counsellors to deal with this sensitive issue; secondly, of school education about genetic risks; and, thirdly, of carrier matching and other non-invasive ways of testing for problems and possibly prenatal diagnosis?

My Lords, the noble Baroness makes an important point. I would like to put on record the Government’s commitment to this. The role of the healthcare professional and of the Government is to provide support and advice to empower people to make informed choices based on clear information and advice. The healthcare professional’s role is to allow the individual to assess these risks and to make their own decisions about what to do; it is not to tell them who they should marry. As a result the Government have made a significant investment in this field, not only in the training of genetic counsellors but in changing the curriculum of primary care colleagues with the collaboration of the Royal College of General Practitioners. We will see more and more genetic knowledge being disseminated through postgraduate education.

My Lords, is the department acting on the recommendation of the Genetic Interest Group that there should be collaboration between regional genetic centres, services for haemoglobin disorders and paediatricians in order to support, identify and offer appropriate counselling to at-risk couples?

Yes, my Lords, we are. I bring to the House’s attention the review of Our Inheritance, Our Future. Published only last week, it refers to the consultation we have carried out since the White Paper was published with more than 50 different stakeholders, including scientists, professionals and patient groups, who overwhelmingly welcomed the progress and investment that have been made since publication. I will ensure that this document is made available to the House.

My Lords, in some parts of the world first-cousin marriages are very common, particularly in the Middle East. On a recent visit to Saudi Arabia I was struck by how much more openly the genetic issues arising from first-cousin marriages are being addressed and discussed. How much interchange is there with countries where this practice is widespread and how much co-operation on research or research projects is under way?

My Lords, I agree with my noble friend’s comments. This issue affects more than 1 billion people around the globe, and 20 to 50 per cent of the marriages between them are consanguineous, most commonly between first cousins. There is collaboration in certain fields. It is important to realise that taking people’s history into account is probably the best way to assess the risk of first-cousin marriages. As we know, there are more than 100 different autosomal recessive disorders. Collaborations exist whereby we can identify certain areas where we can counsel the patient and try to identify some of these risks through antenatal screening.

My Lords, is my noble friend aware that my great-great-great-grandfather, Sir John Acton, the Bourbon Prime Minister of the Kingdom of the Two Sicilies, married his niece with the benefit of papal dispensation, and that their grandson was the first Lord Acton, who was a Liberal and not a Bourbon, and of whom the noble Lord, Lord McNally, thoroughly approves? From what has been discussed so far, I am not clear that there is a genetic risk. I hastily add that none of my nine brilliant brothers and sisters nor I is as clever as our great-grandfather.

My Lords, there is a risk but, as my noble friend suggested, it is very small. Communities that practise cousin marriages have twice the risk of having a child affected by inherited genetic disorder. The overall risk is still very low at about 4 per cent, whereas the risk in the general population is 2 per cent. To the list of the noble Lord’s family I would add Albert Einstein and others, who were probably more mathematically inclined and were aware of the risks.

My Lords, do the Government have any evidence whether there are any differences as regards the tendency of different ethnic groups to incur the risks of first-cousin marriage? I hope this will be a rather easier question to answer than the previous one.

My Lords, I am not aware of any differences between ethnic groups but I am aware of certain autosomal recessive disorders that might be higher in some ethnic groups. I will be more than happy to write to the noble Lord on one specific disorder which we see in Ashkenazi Jews and which we screen for quite regularly.

My Lords, what is being done on health education in communities where such practices are prevalent? What advice is being offered to entry clearance officers abroad regarding cases where such marriages may be used for the purpose of entry to the United Kingdom?

My Lords, the department has funded two projects that have looked at ways of raising community awareness of genetic risk. In Blackburn, a genetic counsellor worked with families who already had an affected child in order to raise understanding of future risks for the family and then worked through the family to offer services to other relatives concerned about their own risks. In Leicester, the local genetics service worked with community groups to raise awareness of the possible risks and the availability of a local specialist genetic service to provide advice and information. Local health services in Bradford also have plans to develop community outreach work to raise awareness, particularly in communities at higher risk.

My Lords, on the genetic problems arising, could further attention be made to the welfare and education of the children involved?

My Lords, as awareness of the risk is disseminated among communities that are at a slightly higher risk, I am sure that that process of information dissemination will be inherited through the children.