A Five-Year Prospective Study of the Health of Children in Different Ethnic Groups, with Particular Reference to the Effect of Inbreeding

Bundey, Sarah; Alam, Hasina

doi:10.1159/000472414

Cited by 139 publications

(92 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Analysis of birth incidence and childhood prevalence data has linked the increased risk of autosomal recessive disorders among British Pakistanis with parental consanguinity. The background risk, to any couple, of serious congenital and genetic disorder diagnosed in infancy or childhood (approximately 3-4%) doubles for first cousins (to approximately 6-8%), and triples (to 9-12%) for first cousins where there is also a history of consanguineous marriage in the family, with the excess due mainly to recessive conditions (Bundey and Alam, 1993).…”

Section: Background To the Assessment Of Urdu Leafletsmentioning

confidence: 99%

Translating Genetics Leaflets into Languages Other Than English: Lessons from an Assessment of Urdu Materials

Shaw

Ahmed

2004

Journal of Genetic Counseling

View full text Add to dashboard Cite

show abstract

Section: Background To the Assessment Of Urdu Leafletsmentioning

confidence: 99%

Translating Genetics Leaflets into Languages Other Than English: Lessons from an Assessment of Urdu Materials

Shaw

Ahmed

2004

Journal of Genetic Counseling

View full text Add to dashboard Cite

show abstract

“…The baseline birth prevalence of serious congenital and genetic disorders for children of unrelated parents is 2.0-2.5 % and rises to 5 % for children of first cousins (Bundey and Alam 1993;Stoltenberg et al 1997;Harper 2010). However, consanguineous marriage (marriage between close blood relatives) only impacts significantly on the birth prevalence of recessively inherited disorders (Modell and Darr 2002).…”

Section: Introductionmentioning

confidence: 99%

“…Estimates for the UK suggest that around 2,300 children are born annually with a severe recessive disorder, and at least 690 (30 %) are from parents of Pakistani origin (Modell, unpublished data). About a third of all affected children die before 5 years of age (Bundey and Alam 1993). Most survivors are chronically disabled and are cared for by community or specialist paediatric services (ibid) as well as needing support from their families.…”

Section: Introductionmentioning

confidence: 99%

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

et al. 2012

View full text Add to dashboard Cite

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 (n050) 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.

show abstract

“…Congenital abnormalities have been shown to occur more often in the offspring of consanguineous parents than in the offspring of non-related parents (Terry et al 1985;Young and Clarke 1987;WHO 1996a, b;Khoury and Massad 2000). There is also an increased prenatal, perinatal and postnatal mortality in children from ethnic groups that practice consanguinity (Bittles et al 1993;Grant and Bittles 1997), which is largely attributable to an increased incidence of autosomal recessive disorders (Devi et al 1987;Bundey and Aslam 1993;Stoltenberg et al 1999;WHO 2000;Tunçbilek 2001;Mokhtari and Bagga 2003;Bittles 2003;Dawodu et al 2005). In the general population, the risk of abnormality or death in early childhood is about 2% to 2.5% for nonconsanguineous couples compared with 5% for consanguineous couples.…”

Section: Introductionmentioning

confidence: 99%

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

Khan

Benson²,

MacLeod

et al. 2010

J Community Genet

View full text Add to dashboard Cite

Blackburn with Darwen Primary Care Trust (PCT) provides services to a substantial Asian population in which the practice of consanguineous marriage is common and there is a high incidence of autosomal recessive disorders. The aim was to provide and evaluate a genetic service accessible to consanguineous families from the South Asian community who had a child affected by an autosomal recessive disorder. Information on genetic risk was provided along with the offer of genetic testing for members of the extended family to identify gene carriers and facilitate informed reproductive choices. An Urduspeaking health visitor was employed to establish a community-based, hospital-linked genetic service in conjunction with local paediatric and regional genetic services offered to parents who had an affected child and 71 of their relatives. The service was evaluated using a specifically designed questionnaire. There was a high uptake of the service (95% of index parents and 92% of relatives to whom it was offered) and a high uptake of carrier testing (94% of relatives to whom it was offered). Eight requests for prenatal diagnosis were made during the course of the service development. Many individuals stated they would consider genetic risk when making future marriage and reproductive plans. Input from a health care worker from the same ethnic background who provided information in their own language was highly valued. Family orientated genetic services for ethnic groups practicing consanguinity can be acceptable and effective when provided in a culturally appropriate manner.

show abstract

A Five-Year Prospective Study of the Health of Children in Different Ethnic Groups, with Particular Reference to the Effect of Inbreeding

Cited by 139 publications

References 16 publications

Translating Genetics Leaflets into Languages Other Than English: Lessons from an Assessment of Urdu Materials

Translating Genetics Leaflets into Languages Other Than English: Lessons from an Assessment of Urdu Materials

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

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

Contact Info

Product

Resources

About