Exploring perceptions of consanguineous unions with women from an East London community: analysis of discussion groups

Consanguineous unions are relationships between blood relatives. This study explores the perceptions of consanguineous unions and risk of childhood disability and illness through the reported views and experiences of women in an ethnically diverse London community. This qualitative study utilised group discussions to elicit women’s views and experiences. Field notes were recorded by independent note-takers in four group discussions. Field notes were coded manually and independently by two researchers who identified common themes for thematic analysis. Thirty-six women attended, of whom 20 identified as Asian Pakistani. Identified themes included variation in participants’ views of consanguineous unions and associated health risks, the value of informed decisions and preferences for information distribution. Although participants had diverse opinions and experiences, they considered risk awareness to be vital for encouraging informed decisions in younger generations. This study highlights the importance of involving the community in efforts to increase awareness around consanguineous unions and genetic risk, emphasising the need for enabling educated choices and the value of co-developing educational efforts with the community. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s12687-019-00429-4) contains supplementary material, which is available to authorized users.