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dc.contributor.authorAhmad, Waqar
dc.contributor.authorDarr, A.
dc.contributor.authorAtkin, Karl
dc.contributor.authorCorry, P.
dc.contributor.authorEt Al
dc.date.accessioned2018-03-20T10:04:59Z
dc.date.available2018-03-20T10:04:59Z
dc.date.issued2013
dc.identifier.citationhttps://adu.on.worldcat.org/oclc/5660306417en_US
dc.identifier.urihttps://dspace.adu.ac.ae/handle/1/759
dc.descriptionDarr, A., Small, N., Ahmad, W. I., Atkin, K., Corry, P., Benson, J., ... & Modell, B. (2013). Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective. Journal of community genetics, 4(1), 49-57.en_US
dc.description.abstractWHO advice suggests a family-centred approach for managing the elevated risk of recessively inherited disor- ders in consanguineous communities, whilst emerging policy recommends community engagement as an integral compo- nent 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 (n050) were conducted in three UK cities with a high settle- ment 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 informa- tion 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 counsellingen_US
dc.language.isoen_USen_US
dc.publisherSpringeren_US
dc.subjectPakistanen_US
dc.subjectGenetic testingen_US
dc.subjectCounsellingen_US
dc.subjectCommunity engagementen_US
dc.subjectConsanguinityen_US
dc.titleExamining the family-centered approach to genetic testing and counseling among UK Pakistanis: a community perspectiveen_US
dc.typeArticleen_US
dc.identifier.doihttps://doi.org/10.1007/s12687-012-0117-x


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