BackgroundInfant mortality is a key public health outcome showing substantial socioeconomic and ethnic inequalities in the UK. The UK Pakistani population has an infant mortality rate of over nine per 1000 livebirths, more than twice that for the population as a whole. Increased risk is partly attributable to rare autosomal recessive genetic disorders linked to the practice of customary consanguineous marriage. WHO recommends community-level action to raise genetic literacy combined with enhanced genetics services. However, UK interventions are in their infancy, with varied local initiatives and no national response. A combination of a valued social practice affecting marginalised communities, complicated patterns of risk, and low professional awareness, makes this a complex and contentious issue. Indeed, some previous intervention has generated considerable backlash. This study in Sheffield, a northern English city, aimed to develop a community-level genetic literacy intervention that would be sensitive and responsive to local information needs. MethodsA participatory approach was used, drawing on a user-centred design and engaging local people as coresearchers. Two phases of insight gathering made use of group discussions, interviews, and participatory exercises to describe current understanding, gaps in knowledge, and trusted networks of communication. A series of testing-and-refinement cycles were then undertaken to coproduce a set of communication materials tailored to subgroups, with materials being tested for acceptability, appeal, and comprehension. FindingsSix local people were trained as coresearchers. Over 200 people participated in the insight and testing work. Information needs and preferred communication channels varied widely, confirming population heterogeneity and diverse perspectives to the issue. Despite some resistance, there was strong demand for information and willingness to discuss the topic. Conveying accurate and consistent information was challenging, as was meeting differing demands for detail within generic materials. Key areas of confusion and mistrust were addressed. Narrative, real life audio (for local radio) and video (for social media) were recommended and developed, supported by factual information in leaflet and website form, and contained links to religious resources plus genetics services. InterpretationDevelopment of appropriate community-level genetic literacy interventions can be achieved through participatory action research. Evaluative work is now needed to assess the effect on knowledge and service uptake. FundingGenetics Disorders UK funded the study. SS is a Senior Research Fellow funded by the National Institute for Health Research (NIHR) School for Public Health Research. Preparatory work was funded by NIHR Collaboration for Leadership in Applied Health Research & Care for South Yorkshire.