Abstract
WHO advice suggests a family-centred approach for managing the elevated risk of recessively inherited disorders in consanguineous communities, whilst emerging policy recommends community engagement as an integral component of genetic service development. This paper explores the feasibility of the family-centred approach in the UK Pakistani origin community. The study took place within a context of debate in the media, professional and lay circles about cousin marriage causing disability in children. Using qualitative methods, a total of six single-sex focus group discussions (n = 50) were conducted in three UK cities with a high settlement of people of Pakistani origin. Tape-recorded transcripts were analysed using framework analysis. Kinship networks within Pakistani origin communities are being sustained and marriage between close blood relatives continues to take place alongside other marriage options. Study participants were critical of what was perceived as a prevalent notion that cousin marriage causes disability in children. They were willing to discuss cousin marriage and disability, share genetic information and engage with genetic issues. A desire for accurate information and a public informed about genetic issues was articulated whilst ineffective communication of genetic risk information undermined professionals in their support role. This study suggests a community that is embracing change, one in which kinship networks are still active and genetic information exchange is taking place. At the community level, these are conditions supportive of the family-centred approach to genetic testing and counselling.
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We wish to thank the study participants, members of the project advisory committee and the two anonymous referees for their helpful comments. This research was funded by a Department of Health research grant (Health Services Research Programme).
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This study was based at the School of Health Studies, University of Bradford, UK.
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Darr, A., Small, N., Ahmad, W.I.U. et al. Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective. J Community Genet 4, 49–57 (2013). https://doi.org/10.1007/s12687-012-0117-x
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DOI: https://doi.org/10.1007/s12687-012-0117-x