Pre-marital genetic counselling to consanguineous couples: Attitudes, beliefs and decisions among counselled, noncounselled and unrelated couples in Israel

Shiloh, Shoshana; Reznik, H.; Bat-Miriam-Katznelson, Mariassa; Goldman, Boleslav

doi:10.1016/0277-9536(94)00433-t

Cited by 35 publications

(27 citation statements)

References 49 publications

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“…In fact, a recent study from the UAE showed that consanguineous marriages are increasing rather than decreasing [1] . Therefore, counseling may have very little impact, as marriage patterns can be very resistant to change [13] . In addition, several studies showed that genetic counseling does not infl uence planning the birth of another child in affected families [5,6,12] .…”

Section: Discussionmentioning

confidence: 99%

Attitudes toward Genetic Counseling in the United Arab Emirates

Al‐Gazali

2005

Public Health Genomics

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Aims: To assess the level of understanding of genetic advice given in the Genetic Clinic and attitudes toward consanguineous marriages, and prenatal, abortion and preconception diagnoses. Methods: One hundred couples underwent structured interviews, and various social and educational data, reason for referral and diagnosis and advice given were recorded. Three months later, the couples were asked open-ended questions about the perceived causation of the disease, recurrence risk, plans for births, and prenatal, abortion and preconception diagnoses. Results: Half of the couples acknowledged a genetic basis for their child’s condition but only 10 remembered the risk given to them. There was a high correlation between educational level and remembering the risk, and the number of healthy children and future plans for further children. Almost half preferred consanguineous marriages and only 10% agreed with prenatal diagnosis and abortion, while 75% agreed with carrier screening and preconception diagnosis in affected families. Conclusion: Effective genetic counseling in this community requires an informed educated population and introduction of carrier screening and preconception diagnosis in affected families.

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Section: Discussionmentioning

confidence: 99%

Attitudes toward Genetic Counseling in the United Arab Emirates

Al‐Gazali

2005

Public Health Genomics

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“…Each of these factors is independently associated with larger family sizes and higher rates of infant and early childhood mortality, with reproductive compensation for early losses a further complicating issue in assessing the overall health outcomes of consanguinity (12). Comprehensive genetic education and premarital genetic counseling programs can help to lessen the burden of genetic diseases in such communities, as reported in Israeli Arab and Bedouin villages (43)(44)(45). While in Middle Eastern countries such as Bahrain educational programs aimed at high school children, and through them their parents and relatives, have had a marked beneficial effect in reducing the incidence of sickle cell disease (46).…”

Section: Consanguinity and Healthmentioning

confidence: 99%

Consanguinity, human evolution, and complex diseases

Bittles

Black

2010

Proc. Natl. Acad. Sci. U.S.A.

472

308

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There is little information on inbreeding during the critical early years of human existence. However, given the small founding group sizes and restricted mate choices it seems inevitable that intrafamilial reproduction occurred and the resultant levels of inbreeding would have been substantial. Currently, couples related as second cousins or closer (F ≥ 0.0156) and their progeny account for an estimated 10.4% of the global population. The highest rates of consanguineous marriage occur in north and sub-Saharan Africa, the Middle East, and west, central, and south Asia. In these regions even couples who regard themselves as unrelated may exhibit high levels of homozygosity, because marriage within clan, tribe, caste, or biraderi boundaries has been a long-established tradition. Mortality in first-cousin progeny is ≈3.5% higher than in nonconsanguineous offspring, although demographic, social, and economic factors can significantly influence the outcome. Improving socioeconomic conditions and better access to health care will impact the effects of consanguinity, with a shift from infant and childhood mortality to extended morbidity. At the same time, a range of primarily social factors, including urbanization, improved female education, and smaller family sizes indicate that the global prevalence of consanguineous unions will decline. This shift in marriage patterns will initially result in decreased homozygosity, accompanied by a reduction in the expression of recessive single-gene disorders. Although the roles of common and rare gene variants in the etiology of complex disease remain contentious, it would be expected that declining consanguinity would also be reflected in reduced prevalence of complex diseases, especially in population isolates. community genetics | inbreeding | reproduction | health | social structure

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“…The sample was recruited from the local Pakistani/ Kashmiri community and included participants that were in consanguineous marriages and those that were not in a consanguineous marriage (Ali et al 2008;Hussain 1999;Shiloh et al 1995). These groups were further subdivided by gender and age (17-29, 30-49, 50+ years old).…”

Section: Recruitment and Ethicsmentioning

confidence: 99%

UK Pakistani views on the adverse health risks associated with consanguineous marriages

2015

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This is a qualitative study exploring the perceptions of members from the Pakistani/Kashmiri community living in Luton, UK, on the adverse health risks associated with consanguineous marriages. Rates of stillbirths and infant mortality are higher than the national average in Luton and the existing evidence base suggests that these higher rates may be associated with consanguinity (especially first cousin marriages) in highly consanguineous populations, such as the Pakistani/Kashmiri ethnic group. This qualitative study included 9 focus groups and 10 one to one in-depth interviews (n=58) with members from the Pakistani/Kashmiri community in Luton during 2012. Audio-recorded transcripts were analysed using framework analysis. Emerging themes included a limited knowledge, opposition to evidence and need for a more culturally sensitive health services approach. Findings from the focus group and interview discussions indicated that participants had a limited and varied understanding of genetic risk and indicated a lack of discussion within the community regarding genetic risk. They also opposed evidence that may link consanguineous marriages with infant mortality, stillbirth or genetic disorders that led to disability. The participants stressed the need for culturally sensitive and locally constructed services for information on genetic risk and services. These findings may be used to address higher rates of infant mortality and adverse health impacts associated with higher rates of consanguinity in Luton and elsewhere, through a partnership approach, improve upon current services and develop culturally appropriate services.

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Pre-marital genetic counselling to consanguineous couples: Attitudes, beliefs and decisions among counselled, noncounselled and unrelated couples in Israel

Cited by 35 publications

References 49 publications

Attitudes toward Genetic Counseling in the United Arab Emirates

Attitudes toward Genetic Counseling in the United Arab Emirates

Consanguinity, human evolution, and complex diseases

UK Pakistani views on the adverse health risks associated with consanguineous marriages

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