Community engagement and education: addressing the needs of South Asian families with genetic disorders
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Community engagement and education: addressing the needs of South Asian families with genetic disorders Nasaim Khan 1 & Gifford Kerr 2 & Helen Kingston 1
Received: 14 April 2016 / Accepted: 12 August 2016 / Published online: 10 September 2016 # Springer-Verlag Berlin Heidelberg 2016
Abstract Consanguineous marriage is common among the South Asian heritage community in the UK. While conferring social and cultural benefits, consanguinity is associated with an increased risk of autosomal recessive disorders and an increase in childhood death and disability. We have previously developed a genetic service to address the needs of this community. We report the extension of this service to include community-based initiatives aimed at promoting understanding of genetic issues related to consanguinity and improving access to genetic services. Our approach was to develop integrated clinical, educational and community engagement initiatives that would be sustainable on a long-term basis. The service provided for South Asian families by a specialist genetic counsellor was extended, and a series of genetics education and awareness sessions were provided for a diverse range of frontline healthcare workers. Two community genetic outreach worker posts were established to facilitate the engagement of the local South Asian population with genetics. The education and awareness sessions helped address the lack of genetic knowledge among primary health care professionals and community workers. Engagement initiatives by the genetic outreach worker raised awareness of genetic issues in the South Asian community and families affected by autosomal recessive disorders. All three elements of the extended service All authors contributed equally to and have approved the final article. * Nasaim Khan [email protected]
1
Genomic medicine, St. Mary’s Hospital, Manchester Academic Health Science Centre, Central Manchester University Hospitals NHS Foundation Trust, Manchester M13 9WL, UK
2
Public Health Medicine, Blackburn with Darwen Borough Council, 10 Duke Street, Blackburn BB2 1DH, UK
generated positive feedback. A three-stranded approach to addressing the needs of consanguineous families affected by autosomal recessive disorders as recommended by the World Health Organisation is suggested to be an acceptable, effective and sustainable approach to delivery of service in the UK. Keywords Consanguinity . Autosomal recessive disorders . Genetic counselling . South Asian . Community engagement
Introduction Consanguinity, which refers to reproductive couples being close blood relatives, is prevalent in many communities in North Africa, the Middle East and West Asia, where it accounts for between 20 and over 50 % of all marriages (Bittles 1990, 2012; Hamamy 2012). Consanguineous marriages confer social and cultural benefits (Modell 2002), continue to be practised and are common among migrant communities in the UK originating from countries and regions where consanguinity is traditional. The Pakistani heritage community is the
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