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

Meghan A Cupp,Tausif Huq,Emma C Alexander,Mary Adams,Meradin Peachey,Lakmini Shah,Logan Manikam,Monica Lakhanpaul,Iram Shazia Mirza,Michelle Heys,Yasmin Milner

doi:10.1007/s12687-019-00429-4

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.

Highlights

Clinical genetics considers a relationship between blood relatives who are second cousins or closer as consanguineous (Hamamy et al 2011; Ng 2016)
J Community Genet (2020) 11:225–234 societies with a cultural milieu of diverse traditions and social norms. This has contributed to the spread of global awareness of the genetic implications of customary consanguineous marriages (Bennett et al 2002; Modell and Darr 2002)
The majority of participants were of Asian Pakistani descent (55%, n = 20), with the most common birthplace of participants being Pakistan (42%, n = 15), followed by the United Kingdom (UK) (25%, n = 9)

Summary

Introduction

Clinical genetics considers a relationship between blood relatives who are second cousins or closer as consanguineous (Hamamy et al 2011; Ng 2016). Consanguineous unions are prevalent in many communities worldwide and it is estimated that, globally, 15% of all neonates have consanguineous parents (Bennett et al 2002; Bittles and Black 2010; Darr 2016). Extended author information available on the last page of the article. J Community Genet (2020) 11:225–234 societies with a cultural milieu of diverse traditions and social norms. This has contributed to the spread of global awareness of the genetic implications of customary consanguineous marriages (Bennett et al 2002; Modell and Darr 2002)

Methods

Results

Conclusion