Improving genetic services for communities practising close relative marriage

What is it about?

Marriage between close relatives, often cousins, occurs in most populations. It is preferred in many parts of the world and among some minority ethnic groups in the UK. While this practice can bring social benefits, it results in an increased risk of some genetic conditions. Past research has shown that the provision of genetic information and services for people affected by this issue is very patchy in the UK. Furthermore, rather than supporting people to make informed reproductive choices, some past initiatives have stigmatised and alienated those who need support. This research aimed to inform guidance on how to address this unmet healthcare need. Between March and July 2018, we used a structured method, called a Delphi exercise, to help people to discuss and develop agreement on this important issue. Participants were invited from a wide range of healthcare backgrounds and the public. Forty two people took part. First, we asked everyone to suggest statements that they felt described important aspects of a response to this health issue. Next, participants ranked the statements on a scale from low to high agreement. Statements were also discussed at a face-to-face meeting. This process led to the identification of a set of 149 statements on which there was high agreement. Some of the statements were general principles, while others referred to specific elements of service provision. The research concluded that there is high agreement among UK stakeholders on how policy and practice should address this issue. Core principles agreed were: equity of access to genetic information and counselling services; cultural competence; coordinated inter-agency working; involvement and empowerment of affected communities; and embedded evaluation. Stakeholders agree on the need to share knowledge and promote responses that are more consistent across the country. An urgent need for strong national leadership is also emphasised. The exercise also identified priority areas for further research and development.

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Photo by Caroline Hernandez on Unsplash

Photo by Caroline Hernandez on Unsplash

Why is it important?

The provision of genetic information and services for people affected by this issue is very patchy in the UK. There is a need for national leadership and sharing of expertise across the country to develop consistent and appropriate services.

Perspectives