Funded by Genetic Disorders UK and CLAHRC Yorkshire & Humber
What are the aims of this project?
This project aims to develop materials and approaches for enhancing genetic literacy at community level with a focus on the genetic risk associated with customary consanguineous marriage.
Why is this important?
Populations that practice customary consanguineous marriage have higher rates of infant mortality and lifelong disability due to a heightened risk of autosomal recessive genetic conditions. WHO recommends: training health professionals, raising genetic literacy at population level, and focused services for families at risk. However, UK service responses are in their infancy and most people at risk have little or no understanding on which to make informed decisions. The need to increase understanding and develop appropriate services has been identified in Sheffield at both community and professional levels.
This project links to our wider programme of work on developing an appropriate service response to genetic risk associated with customary consanguineous marriage.
How will the research be carried out?
A participatory, action research project has been adopted with the goal of developing, delivering and evaluating a community-based genetic literacy and support model. Working closely with community researchers, we undertook an iterative process of generating insight, developing materials and testing our approach. Follow on work is now underway to evaluate more rigorously an informational video that has been developed.
March 2013 – March 2016
Who is undertaking the research?
How are stakeholders being engaged?
The project involves close collaboration between university researchers, public health practitioners and community based organisations. The participatory approach involved community researchers who were trained and supported to gather and analyse data in their communities. An advisory group was convened to provide critical commentary on the initial research, involving lay and professional members. The project now reports regularly to the Sheffield Community Genetics Working Group. Findings and progress are shared regularly across the region with stakeholders.
What will be the outputs from the study?
A video has been developed and is available on request firstname.lastname@example.org
A presentation on the project was delivered by Sarah Salway at the Lancet/UCL Public Health Science conference in Glasgow in November, 2014.Towards enhanced community genetic literacy among a minority ethnic community: a participatory action research project