Introduction

In common with many parts of the UK, work is underway in Sheffield to develop effective and sensitive services that can support individuals and families affected by genetic disorders associated with close blood relative marriage (e.g. cousin marriage).

A need for more information and better services

Speaking to local people has shown us that there is much confusion among community members and a need for better information and improved access to genetics services. We also know that genetic information is not always shared among family members so that many people lack the information they need to make informed decisions about marriage and having children.

Higher levels of infant death and life-long disability

We now have good evidence that communities practising close blood relative marriage have higher levels of infant death and life-long disability than communities marrying outside the family. Nevertheless, at the population level, these genetic conditions are rare, and most babies born to related couples are healthy.

Families at risk

Genetic conditions cluster in families and some families experience multiple infant deaths and/or multiple members with serious disabilities. Individuals in these families need easy access to information and support so that they can make informed reproductive decisions.

Developing culturally competent services in Sheffield

Our aim in Sheffield is to develop services at community, GP practice and hospital level that are effective and culturally appropriate. The overarching goal is to provide people with the information and services that help them to make informed decisions about marriage and having children.

Genetics is important to everyone!

Everyone has a role to play in improving knowledge and removing barriers to uptake of genetics services. Sharing information among family and community members will help to increase people's confidence and understanding.

This online learning resource is intended to help this process – please let other people know about these resources!