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.
Subject(s)
Arabs/psychology , Attitude to Health/ethnology , Consanguinity , Genetic Counseling , Adolescent , Adult , Arabs/genetics , Culture , Female , Genetic Diseases, X-Linked , Humans , Interviews as Topic , Israel , Male , Patient Education as Topic , Socioeconomic Factors , StereotypingABSTRACT
To evaluate the effects of ethnicity, culture, and counseling style on the interpretation of nondirectiveness in genetic counseling, a questionnaire containing premarital and prenatal case vignettes in two versions (pessimistic/optimistic) was administered to 281 Jewish and 133 Bedouin respondents. The first study population was comprised of Jewish students enrolled in a university and a community college in the Negev (southern part of Israel). The second study population was comprised of Muslim-Bedouin college students from the same area. The majority of Jewish respondents interpreted the nondirective message as intended by counselors, while the majority of Bedouin respondents did not. Counseling style was found to have a statistically significant effect on the interpretation of the general role of counseling. Gender and susceptibility were not found to have a significant effect on interpretation. Group differences are analyzed through a cultural lens in which different interpretive norms can generate expectations for either nondirectiveness or directiveness.
Subject(s)
Arabs/psychology , Attitude , Cross-Cultural Comparison , Directive Counseling , Genetic Counseling/psychology , Jews/psychology , Prenatal Diagnosis/psychology , Genetic Predisposition to Disease , Humans , Islam , Israel , Judaism , Students/psychology , Surveys and Questionnaires , UniversitiesABSTRACT
UNLABELLED: 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.