Developing and evaluating a culturally appropriate genetic service for consanguineous South Asian families

Khan, Nasaim; Benson, J. W. T.; MacLeod, Rhona; Kingston, Helen

doi:10.1007/s12687-010-0012-2

Cited by 22 publications

(31 citation statements)

References 24 publications

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“…Marriage within families creates connections that may enable dissemination of information and provision of support. Our experience indicates that this needs to be facilitated in a culturally acceptable and empowering manner and can be difficult to achieve without active involvement and support from clinical genetic services (Khan et al 2010).…”

Section: Discussionmentioning

confidence: 99%

“…Our approach integrates the offer of information and support to the parents of affected children and relatives in the extended family, with a community engagement programme aimed at increasing genetic literacy in the wider community to promote accurate information and reduce stigma, which families perceive to be major problems (Khan et al 2010;Darr et al 2013). Marriage within families creates connections that may enable dissemination of information and provision of support.…”

Section: Discussionmentioning

confidence: 99%

“…Affected adults and children were offered genetic investigation and counselling, followed by cascade counselling and the offer of genetic testing to members of the extended family. This service has been evaluated (Khan et al 2010) and identified that key factors in the success of this service development were the provision of a locally based genetic counselling service that addressed potential language and cultural barriers to accessibility and acceptability. This service has subsequently been extended to incorporate genetic counselling clinics held in the local antenatal clinic in conjunction with midwives and obstetricians.…”

Section: Methodsmentioning

confidence: 99%

“…We have identified a broad range of autosomal recessive disorders in BwD, many of which are amenable to diagnosis by mutation analysis, enabling genetic counselling and carrier testing of extended family members as well as prenatal or preimplantation genetic diagnosis. However, we have previously reported that there is little awareness of inherited disorders within the South Asian population in BwD and have identified that lack of knowledge, poor communication, language barriers and stigma are all factors inhibiting access to genetic services (Khan et al 2010).…”

Section: Introductionmentioning

confidence: 99%

“…Following a Department of Health funded service development initiated in 2002, we established and evaluated a hospital-based genetic counselling service in BwD for parents and extended relatives in consanguineous families where a child has been diagnosed with an autosomal recessive disorder (Khan et al 2010). However, we recognised the need to take a broader approach to improve access to genetic services for the South Asian community and complement existing clinical genetic services with community education and engagement.…”

Section: Introductionmentioning

confidence: 99%

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

2016

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

2016

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Assessing interventions promoting the uptake of cancer‐related genomic services within the Latino community: A scoping review using the RE‐AIM framework

Ramirez Leon,

Martinez,

Rivera Rivera

et al. 2024

Cancer Medicine

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Cancer genomic services (CGS) can support genetic risk‐stratified cancer prevention and treatment. Racial/ethnic minority groups are less likely to access and utilize CGS compared with non‐Hispanic Whites. Little research has described characteristics of interventions targeted at CGS among Latinos. This scoping review aimed to (1) describe interventions promoting uptake of CGS among Latinos in the United States and Latin America, (2) describe intervention adaptations for Latino participants, and (3) summarize intervention implementation factors suggested by reach, effectiveness, adoption, implementation, and maintenance (RE‐AIM) framework. We conducted a search in English and Spanish of literature published between 2005 and 2022 across PubMed and Latin American and Caribbean Health Sciences Literature databases. Sixteen of 2344 papers met the inclusion criteria of the analysis. Efforts to promote CGS among Latino communities were limited in the US and lower in Latin America. This review highlights the need for in‐depth exploration of acculturation‐informed interventions and better reporting on implementation factors to enhance their scalability across diverse settings.

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Prenatal and preconception genetic counseling for consanguinity: Consanguineous couples' expectations, experiences, and perspectives

Thain

Shuman

Miller

et al. 2019

Journal of Genetic Counseling

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Consanguinity, the union between two individuals who are related as second cousins or closer, is a long‐standing and respected tradition in many communities. Although there are social and economic benefits of consanguineous unions, offspring are at increased risk of having an inherited genetic condition or congenital anomaly. Genetic counseling services for consanguinity are available to couples at many centers. However, little is known about patient expectations of and experiences with genetic counseling for this indication, or their perspectives on genetic screening relevant to family planning, such as expanded carrier screening (ECS). This exploratory qualitative study involved interviews with 13 individuals who had recently received preconception or prenatal genetic counseling for consanguinity at a single center. We sought to gain insight into their expectations for the genetic counseling session, experiences discussing family history and reproductive risks with the genetic counselor, and views on ECS. Interview transcripts were analyzed using an interpretive descriptive approach. Data analysis revealed three main themes: (a) anticipation balances apprehension before the appointment; (b) genetic counseling reduces anxiety and empowers; and (c) the need for wider information dissemination about consanguinity‐related risks and genetic services. Our findings support the personal utility of genetic counseling for consanguinity and demonstrate the need for increased visibility and access to genetics information, counseling, and testing relevant to this patient population.

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Developing and evaluating a culturally appropriate genetic service for consanguineous South Asian families

Cited by 22 publications

References 24 publications

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

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

Assessing interventions promoting the uptake of cancer‐related genomic services within the Latino community: A scoping review using the RE‐AIM framework

Prenatal and preconception genetic counseling for consanguinity: Consanguineous couples' expectations, experiences, and perspectives

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