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

Abstract

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.

Cascade screening for beta-thalassaemia in Pakistan: relatives’ experiences of a decision support intervention in routine practice

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Consanguineous marriages, premarital screening, and genetic testing: a survey among Saudi university students

“…In couples with no known genetic disorders in the family, there is an additional risk in the offspring of first cousins compared to the general population. A British study mentioned positive PA among younger students who were well aware of health hazards in their offspring due to CMs ( 40 ). An Indonesian study mentioned similar expressions of personal attitudes among Indonesian youth ( 41 ).…”