Introduction

In common with many parts of the UK, work is underway in Sheffield to develop an effective and sensitive response to the issue of increased genetic risk associated with close blood relative marriage (e.g. cousin marriage).

Growing concern among professionals and the public
In recent years, there has been growing concern among healthcare commissioners, health professionals, community groups and members of the public that the increased genetic risk associated with close blood relative marriage is poorly understood and inadequately addressed in Sheffield.

Poor access to information and services
Consultations have shown that there is much confusion among both professionals and 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 reproductive decisions.

Increased rates of infant mortality and life-long disability
We now have good evidence that populations practising close blood relative marriage have higher rates of infant mortality and higher rates of life-long disabling conditions than populations 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.

Avoiding harmful intervention
Interventions in other parts of the UK have sometimes done more harm than good. Simplistic messages can alienate and confuse people.  Rather than blaming people or stigmatising the practice of cousin marriage, it is important to focus attention on increasing people’s understanding of the issues and improving access to high quality genetics counselling and testing services.

Developing a culturally competent service response in Sheffield
Our aim in Sheffield is to develop services at community, primary care and secondary care level that are effective and culturally competent.  The goal is to provide people with information and services that equip them to make informed decisions about marriage and childbearing.

Health and community professionals have an important role to play
Responding effectively and sensitively to this complex issue requires a coordinated, multi-professional approach. It is vital that health and community professionals are well-informed, confident and competent to provide consistent and positive messages to those needing information and support.  This online learning suite will help you achieve this goal.