Between Acculturation and Ambivalence: Knowledge of Genetics and Attitudes towards Genetic Testing in a Consanguineous Bedouin Community

Abstract

The Bedouins of the Negev (Southern part of Israel) are a community at increased risk for genetic diseases and congenital anomalies as a result of frequent consanguinity (particularly patrilateral parallel-cousin marriage) and underutilization of prenatal genetic tests due to a Muslim ban on abortion. Objective: To assess the knowledge and attitudes of Bedouin schoolchildren and their teachers towards a community-based, premarital carrier-matching program aimed at reducing the prevalence at birth of genetic diseases. Methods: A questionnaire was presented to 61 teachers and 40 schoolchildren as part of guided interaction in small groups, conducted in Bedouin schools between 1999 and 2001. Results: Susceptibility as well as knowledge of genetics were found to correlate with a positive attitude towards the genetics program among both teachers and pupils. However, pupils had a lower knowledge index as compared to teachers, and their attitudes were slightly less positive. Conclusion: The difference between teachers and pupils is discussed in the context of the latter’s acculturation, which contradicts tradition and parental authority and can generate ambivalence. Attitudes are further discussed in the context of the Health Belief Model and the complex interplay of tradition, Islam, cousin marriage and biomedicine.

Knowledge of Genetics and Attitudes toward Genetic Testing among College Students in Saudi Arabia

“…Compared to the Canadian public, which showed a relatively high mean knowledge score of 11 out of 16 [1], our study revealed a mean knowledge score of 5.3 out of 7. Our results were comparable to those for Israeli Bedouins [20]. The high knowledge level in our study may have been influenced by the nature of the study population who were young educated college students, and approximately two thirds of them were females.…”

“…It is hoped that this reinforcement will provide students with a better basic knowledge of genetics and lead to a positive attitude toward genetic testing. Raz et al [20] concluded that a proper genetics education has improved the knowledge of genetics and attitudes toward genetic testing among Israeli Bedouins. Furthermore, the region is in critical need of more expertise on genetics and genetic testing because of the high prevalence of inherited and genetic diseases.…”

“…The use of genetic testing is increasing, and patients need knowledge to make decisions about certain aspects of the testing. Studies investigating the general knowledge of genetics and genetic testing in the Eastern Mediterranean region are limited [20,21,22]. In Saudi Arabia, a number of studies have focused on knowledge and beliefs involving premarital testing [23,24,25,26].…”

Prevalence of consanguineous marriages and associated factors among Israeli Bedouins

“…These programs are aimed to inform about the risks of consanguineous marriages and the association between consanguineous marriages and hereditary diseases and tests that could be done to prevent the birth of infants with congenital malformations. Raz et al (2003) assessed the knowledge and the attitude of schoolchildren and their teachers towards genetic testing in a consanguinity Bedouin community, 4 years after a community-based genetic educational program was established and found that knowledge on genetics and positive attitude towards genetic counseling were positively correlated. They also found that the participants were afraid from the stigma associated with positive carrier status, especially women because it can make it difficult for her to get married as first wife.…”

“…They also found that the participants were afraid from the stigma associated with positive carrier status, especially women because it can make it difficult for her to get married as first wife. In that case, it is better to require genetic screening before marriage and avoiding of marriages between carriers (Raz et al 2003). It is the duty of the public health professionals to ensure accessibility to counseling services and to periodically evaluate the knowledge and awareness of the health consequences of consanguineous marriages on offspring health.…”