Report of a working party of the standing medical advisory committee on sickle cell, thalassaemia and other haemoglobinopathies.

  • Great Britain. Standing Medical Advisory Committee.
Date:
1993
Catalogue details

Licence: Open Government Licence

Credit: Report of a working party of the standing medical advisory committee on sickle cell, thalassaemia and other haemoglobinopathies. Source: Wellcome Collection.

    17/132 (page 15)
    | OCCURRENCE OF HAEMOGLOBIN DISORDERS IN ENGLAND AND WALES The occurrence of the haemoglobinopathies in the UK depends on the number and distribution of the ethnic groups at risk, and on the characteristics of their carrier states, marriage trends and birth rates. The birth rate and the total numbers in each ethnic group are both relevant to service planning. In addition the effectiveness, acceptability and costs of intervention measures need to be considered when determining use of resources. NUMBERS OF ETHNIC MINORITIES An estimate of the number and distribution of the main groups at risk can be derived from the 1991 census figures. However, even in the 1991 census, categorisation is not detailed enough to allow identification of some at risk groups such as Cypriots and Italians (see Section 3 for further information). The effect of population movements on the frequency of haemoglobinopathies in North West Europe has been studied in detail by the World Health Organisation (Ref 2). The figures suggest that about 6% of the population of England and about 10% of all births are in groups at risk for haemoglobinopathy disorders (Appendix 3). GEOGRAPHICAL DISTRIBUTION The distribution of persons aged under 5 belonging to ethnic minority groups is summarised in Figure 1. Though ethnic minorities tend to be concentrated in the conurbations, every NHS Region has at least one area with a significant number of births in relevant ethnic groups. Every Regional Director of Public Health therefore has a role in ensuring that purchasers demand the relevant carrier screening and appropriate counselling. BIRTH RATES All but the longest-established ethnic groups have a young age-distribution (Figure 2), and thus a relatively high birth rate. Therefore, the need for screening and counselling will increase rather than decrease in the future. Some families have large numbers of children; but these numbers are falling fast among British Pakistanis and Bangladeshis as the new generation increasingly uses family planning and other services. NUMBERS OF PEOPLE WITH HAEMOGLOBINOPATHY TRAITS Most information on carrier rates is based on studies made in the countries of origin of the different groups, but the observed birth-rates of affected infants in the UK are consistent with the figures shown in Appendix 3. There is tremendous variation in the haemoglobinopathy genes found in different ethnic groups, and no specific haemoglobinopathy is confined to a single ethnic group.