Challenges to effective and autonomous genetic testing and counseling for ethno-cultural minorities: a qualitative study
| Autor: | Miriam Ethel Bentwich, Nomy Dickman, Basem Higazi, Nehama Cohen-Kfir, Mary Rudolf, Tzipora C. Falik-Zaccai, Andrew Kent, Limor Kalfon, Mary Tanus |
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| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
0301 basic medicine
Counseling Health (social science) Minority group Genetic counseling media_common.quotation_subject Ethno-cultural minority Ethnic group Genetic Counseling 030105 genetics & heredity 03 medical and health sciences 0302 clinical medicine Qualitative research medicine Humans Genetic counseling barriers Genetic Testing Israel Prenatal genetic testing Minority Groups Genetic testing media_common lcsh:R723-726 030219 obstetrics & reproductive medicine medicine.diagnostic_test Distrust Health Policy Arab minorities Focus group humanities Arabs Issues ethics and legal aspects Philosophy of medicine North America Multicultural society Female lcsh:Medical philosophy. Medical ethics Psychology Social psychology Research Article |
| Zdroj: | BMC Medical Ethics BMC Medical Ethics, Vol 21, Iss 1, Pp 1-16 (2020) |
| ISSN: | 1472-6939 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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