Aviad E Raz1, Marcela Atar. 1. Department of Behavioral Sciences, Ben-Gurion University of the Negev, Beer-Sheva, Israel. aviadraz@bgumail.bgu.ac.il
Abstract
CONTEXT: Premarital carrier matching is a form of genetic counselling in which two individuals are told, if both are carriers, that they have a 25% risk at each pregnancy of having a child affected by the disease for which they were tested. If only one individual is a carrier this information is not disclosed. This scheme is offered to a consanguineous Bedouin community characterised by high prevalence of genetic diseases and a religious ban on abortion. OBJECTIVE: To elicit attitudes of community members concerning cousin marriage and genetic counselling. METHOD: Semi-structured interviews were conducted with Bedouin respondents (n = 49). RESULTS AND CONCLUSIONS: Interviews revealed that a majority of Bedouin respondents confirmed the traditional and social role of cousin marriage. The main reasons given in this context were clan solidarity, interpersonal compatibility, preservation of family property, parental authority and social protection for women. A majority of the respondents also associated cousin marriage with genetic diseases. Regarding genetic testing, the majority of respondents preferred the option of premarital carrier matching, which was supposed to reduce stigmatisation, especially of women. Prenatal genetic testing was rejected on religious grounds. The result of this community-based and culture-sensitive process was a focus on premarital carrier matching.
CONTEXT: Premarital carrier matching is a form of genetic counselling in which two individuals are told, if both are carriers, that they have a 25% risk at each pregnancy of having a child affected by the disease for which they were tested. If only one individual is a carrier this information is not disclosed. This scheme is offered to a consanguineous Bedouin community characterised by high prevalence of genetic diseases and a religious ban on abortion. OBJECTIVE: To elicit attitudes of community members concerning cousin marriage and genetic counselling. METHOD: Semi-structured interviews were conducted with Bedouin respondents (n = 49). RESULTS AND CONCLUSIONS: Interviews revealed that a majority of Bedouin respondents confirmed the traditional and social role of cousin marriage. The main reasons given in this context were clan solidarity, interpersonal compatibility, preservation of family property, parental authority and social protection for women. A majority of the respondents also associated cousin marriage with genetic diseases. Regarding genetic testing, the majority of respondents preferred the option of premarital carrier matching, which was supposed to reduce stigmatisation, especially of women. Prenatal genetic testing was rejected on religious grounds. The result of this community-based and culture-sensitive process was a focus on premarital carrier matching.
Authors: Mashael Al-Shafai; Aisha Al-Romaihi; Noora Al-Hajri; Nazmul Islam; Karam Adawi Journal: Int J Environ Res Public Health Date: 2022-04-06 Impact factor: 3.390