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Consanguineous Relationships

Volume 460: debated on Wednesday 9 May 2007

To ask the Secretary of State for Health (1) how many leaflets aimed at members of the public in consanguineous relationships who intend to have children were produced in the latest year for which figures are available; (129405)

(2) what information her Department provides to GPs and other medical professionals on how they should advise patients of the risks associated with consanguineous sexual relationships.

The Department does not produce leaflets for members of the public on this issue, nor does it collect data on leaflets that may be produced by other sources.

A leaflet on genetic risk and consanguineous marriage has recently been produced as part 2 of a collaborative project by the London IDEAS genetic knowledge park and the Genetic Interest Group (GIG, a national alliance of patient organisations) that aims to address the lack of availability of multilingual information on genetic disorders and risk. However, this leaflet is for use by specialised genetics services as an adjunct to genetic counselling. It is currently available in English, Urdu, Gujarati, Punjabi and Turkish. It is one of a series dealing with genetic disorders and risk.

The Department does not provide guidance for general practitioners or other health professionals on the issue of the risks associated with consanguineous sexual relationships. In general, guidance on issues of practice is a matter for the appropriate professional or regulatory bodies. In addition, local national health service organisations may decide to issue guidance to help practitioners deal with issues which are of particular relevance to their local population.

The Human Genetics Commission supports the need for proper provision of education and information about marriage within a kinship group. This should entail access to counselling and support, preferably in the individual’s or couple’s preferred language, and a no-blame approach that enables at-risk couples to come forward for testing. Those wanting specific advice on their individual risk should consult a clinical geneticist or genetic counsellor in their local NHS regional genetics centre.

From later this year the curriculum for trainee general practitioners will include learning objectives to equip them to refer patients at risk of genetic conditions appropriately and to appreciate the importance of considering a patient’s cultural and religious background and beliefs concerning inheritance in providing care. These have been developed by the Royal College of General Practitioners in partnership with the NHS National Genetics Education and Development Centre, which is funded by the Department.