Community engagement and education: addressing the needs of South Asian families with genetic disorders

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 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.

Enhancing health literacy through co-design: development of culturally appropriate materials on genetic risk and customary consanguineous marriage

“…Within the context of this small project our response was to include within the leaflet encouragement to the reader to (i) share and discuss the information with family and friends and (ii) seek further information from the GP if concerned about a genetic condition in their own family. Ideally, however, the project would have had a broader remit and responded to WHO recommendations to develop a holistic approach to the issue, combining efforts to increase community-level genetic literacy with both enhanced genetics services and training to develop the necessary knowledge, skills and sensitivity among health-care professionals (Darr et al ., 2013; Khan et al ., 2016; Salway et al ., 2016a). Indeed, our co-design workshops revealed some participants’ past experiences of receiving inaccurate information from health-care practitioners and difficulties in gaining referrals to the genetic service from primary care.…”

“…Consanguineous marriage is a socially acceptable practice in many countries such as the Middle East, Pakistan, Bangladesh, India, Turkey and Lebanon (Othman and Saadat, 2009). In the United Kingdom, cousin marriage is found occasionally among the majority White British population, but is more common, and often preferred, among a number of minority ethnic populations; the largest being those who identify as ‘Pakistani’ or ‘British Pakistani’ (Khan et al ., 2016; Salway et al ., 2016).…”

Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review

“…185 In India, the establishment of a community genetic outreach worker to raise awareness of autosomal recessive disorders associated with consanguinity, support affected individuals, identify families at risk, and increase uptake of local genetic services demonstrated a successful and sustainable community-based genetic service model. 186 At the institutional level, effective coordination and referral between psychosocial services and genetic counseling could help support individuals and families in coping with disease. Increasing awareness for genetic testing at the institutional level could increase demand and thus streamline operating costs of laboratories.…”

Exploring perceptions of consanguineous unions with women from an East London community: analysis of discussion groups

“…This association has become particularly concerning in the UK, with several studies focusing on consanguineous unions in Pakistani communities (Sanderson et al 2006;Sheridan et al 2013;Best et al 2017). Some studies have focused on community perceptions of genetic risk (Ali et al 2012;Ajaz et al 2015;Darr 2016) and sought to inform interventions on how best to improve genetic literacy in consanguineous populations (Khan et al 2016;Salway et al 2016;Ali et al 2018).…”