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Challenges to effective and autonomous genetic testing and counseling for ethno-cultural minorities: a qualitative study.

ABSTRACT: BACKGROUND:The 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. METHODS:We 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. RESULTS:A 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. CONCLUSIONS:The 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.

SUBMITTER: Cohen-Kfir N

PROVIDER: S-EPMC7565773 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Challenges to effective and autonomous genetic testing and counseling for ethno-cultural minorities: a qualitative study.

Cohen-Kfir Nehama N Bentwich Miriam Ethel ME Kent Andrew A Dickman Nomy N Tanus Mary M Higazi Basem B Kalfon Limor L Rudolf Mary M Falik-Zaccai Tzipora C TC

BMC medical ethics 20201015 1

<h4>Background</h4>The 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 exc ...[more]

PMID: 33059675

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Project description:BackgroundIn a patriarchal social system, a women-dominated profession like nursing is mostly seen as a disempowered group due to its stereotypical image and negative connotations. The low social prestige of this profession is based on the roles typically assigned to men and women to maintain gender identity according to their performance and embodiment. The aim of this study was to explore the social and cultural challenges faced by nurses while creating their professional image within the regional context of Lahore (Punjab) in Pakistan.MethodsA qualitative research design was chosen to conduct one-to-one, in-depth interviews with twelve nurses. Recruitment was based on purposive sampling from three large public hospitals in Lahore to learn about nurses' perceptions of social and cultural challenges in the nursing profession. A thematic analysis was conducted using the data analysis software package NVivo 12 Plus.ResultsCultural values give preference for female nurses. We have identified four major themes related to the social and cultural challenges facing the nursing profession: 1) gender-segregated profession, 2) inappropriate portrayals by the media, 3) issues around marriage settlement, and 4) identity from a religious perspective. These conflicts are affecting the professional status and changing perceptions of nurses, who either do not choose to remain in the nursing profession or do not recommend nursing as a career option. These ongoing constraints are still perpetuating and increasing shortage of nurses within the Pakistani healthcare system.ConclusionThe present study solely highlights nurses' perspectives on redefining gender roles and gender integration within the nursing profession. It argues that there is a need for positive portrayals in the media for the removal of public misperceptions related to nursing. This would reduce the shortage of nurses along with increasing retention and improving the quality of healthcare delivered to the public.

Dataset Information

Challenges to effective and autonomous genetic testing and counseling for ethno-cultural minorities: a qualitative study.

Publications

Challenges to effective and autonomous genetic testing and counseling for ethno-cultural minorities: a qualitative study.

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