ArticleJournal of community genetics2013
Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective.
Article in Journal of community genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
What it found
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Who cites it
15 citing papers in PubMed.
- Voices in practice: Exploring genetic counseling ethical, cultural, social, and religious dynamics in the UAE.Journal of genetic counseling · 2025Article
- Experiences of perinatal genetic screening for people from migrant and refugee backgrounds: a scoping review.European journal of human genetics : EJHG · 2025Article
- Mortality, morbidity and educational outcomes in children of consanguineous parents in the Born in Bradford cohort.Wellcome open research · 2024Article
- Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK.Journal of genetic counseling · 2020Article
- Exploring perceptions of consanguineous unions with women from an East London community: analysis of discussion groups.Journal of community genetics · 2020Article
- Article
- Enhancing health literacy through co-design: development of culturally appropriate materials on genetic risk and customary consanguineous marriage.Primary health care research & development · 2019Article
- Article
- Factors for successful implementation of population-based expanded carrier screening: learning from existing initiatives.European journal of public health · 2017Article
- Community engagement and education: addressing the needs of South Asian families with genetic disorders.Journal of community genetics · 2016Article
- Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England.Journal of community genetics · 2016Article
- A review of consanguinity in Ireland--estimation of frequency and approaches to mitigate risks.Irish journal of medical science · 2016Review
- Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis.Journal of community genetics · 2016Article
- UK Pakistani views on the adverse health risks associated with consanguineous marriages.Journal of community genetics · 2015Article
- Consanguineous marriage and reproductive risk: attitudes and understanding of ethnic groups practising consanguinity in Western society.European journal of human genetics : EJHG · 2014Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.