Abstract
BackgroundThe Arab population in Israel is a minority ethnic group with its own distinct cultural subgroups. Minority populations are known to underutilize genetic tests and counseling services, thereby undermining the effectiveness of these services among such populations. However, the general and culture-specific reasons for this underutilization are not well defined. Moreover, Arab populations and their key cultural-religious subsets (Muslims, Christians, and Druze) do not reside exclusively in Israel, but are rather found as a minority group in many European and North American countries. Therefore, focusing on the Arab population in Israel allows for the examination of attitudes regarding genetic testing and counseling among this globally important ethnic minority population.MethodsWe used a qualitative research method, employing individual interviews with 18 women of childbearing age from three religious subgroups (i.e., Druze, Muslim, and Christian) who reside in the Acre district, along with focus group discussions with healthcare providers (HCPs; 9 nurses and 7 genetic counselors) working in the same geographical district.ResultsA general lack of knowledge regarding the goals and practice of genetic counseling resulting in negative preconceptions of genetic testing was identified amongst all counselees. Counselors’ objective of respecting patient autonomy in decision-making, together with counselees’ misunderstanding of genetic risk data, caused uncertainty, frustration, and distrust. In addition, certain interesting variations were found between the different religious subgroups regarding their attitudes to genetic counseling.ConclusionsThe study highlights the miscommunications between HCPs, particularly counselors from the majority ethno-cultural group, and counselees from a minority ethno-cultural group. The need for nuanced understanding of the complex perspectives of minority ethno-cultural groups is also emphasized. Such an understanding may enhance the effectiveness of genetic testing and counseling among the Arab minority group while also genuinely empowering the personal autonomy of counselees from this minority group in Israel and other countries.
Highlights
The Arab population in Israel is a minority ethnic group with its own distinct cultural subgroups
Study design We conducted a qualitative study to address two main research questions: (1) What are the opinions, experiences, and preconceptions regarding genetic testing and counseling among the three predominant Arab populations in Israel (Christian, Druze, and Muslim)? (2) How do genetic counselors and nurses in mother and infant clinics describe the unique challenges of working with this population in the context of genetic counseling? This study is part of an action research study to identify challenges pertaining to genetic counseling of minority populations and subsequently implement interventions that address these issues
Almost half had previously been referred to genetic counseling services
Summary
The Arab population in Israel is a minority ethnic group with its own distinct cultural subgroups. HCPs working in the field of human genetics and genetic counselors are expected to communicate complex genetic information while operating under an obligation for patient autonomy to help patients make informed choices free of the influence of the HCP’s value system [1,2,3]. This approach acknowledges people’s tendency to make decisions based on their social and personal backgrounds—namely, decisions affected by personal and cultural preferences, by medical considerations [4, 5]. The emphasis on counselees’ autonomy follows current standard guidelines for genetic counseling as they were formulated by the Genetic Counseling Definition Task Force of the National Society of Genetic Counselors (NSGC) [21]
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