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Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British PakistanisDarr, Aliya, Small, Neil A., Ahmad, Waqar I-U., Atkin, K., Corry, P.C., Modell, B. 12 September 2015 (has links)
Yes / Currently there is no consensus regarding services required to help families with consanguineous
marriages manage their increased genetic reproductive risk. Genetic services for communities with a
preference for consanguineous marriage in the UK remain patchy, often poor. Receiving two disparate
explanations of the cause of recessive disorders (cousin marriage and recessive inheritance) leads to
confusion among families. Further, the realisation that couples in non-consanguineous relationships
have affected children leads to mistrust of professional advice. British Pakistani families at-risk for
recessive disorders lack an understanding of recessive disorders and their inheritance. Such an
understanding is empowering and can be shared within the extended family to enable informed choice.
In a three-site qualitative study of British Pakistanis, we explored family and health professional
perspectives on recessively inherited conditions. Our findings suggest, first, that family networks hold
strong potential for cascading genetic information, making the adoption of a family centred approach
an efficient strategy for this community. However, this is dependent on provision of high quality and
timely information from health care providers. Secondly, families’ experience was of ill-coordinated
and time-starved services, with few having access to specialist provision from Regional Genetics
Services; these perspectives were consistent with health professionals’ views of services. Thirdly, we
confirm previous findings that genetic information is difficult to communicate and comprehend, further
complicated by the need to communicate the relationship between cousin marriage and recessive
disorders. A communication tool we developed and piloted is described and offered as a useful
resource for communicating complex genetic information. / Department of Health
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Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspectiveDarr, Aliya, Small, Neil A., Ahmad, W.I., Atkin, K., Corry, P.C., Benson, J., Morton, R., Modell, B. January 2013 (has links)
No / 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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