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      Experiences, Perceptions, and Meanings of the Ultra-Orthodox in Israel Regarding Premarital Genetic Testing

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          Abstract

          This article focuses on experiences and perceptions of the Jewish ultra-Orthodox population in Israel—a religious minority—regarding premarital genetic testing. Semistructured interviews with 38 ultra-Orthodox individuals revealed four major themes. These themes reflect strong awareness of testing importance among Ashkenazi ultra-Orthodox, along with a high frequency of testing, while low awareness of testing importance was evident among Sephardi ultra-Orthodox along with a very low frequency of testing. The study’s findings also indicate the central role that the Ashkenazi rabbis have in the routinization of the premarital genetic testing among their communities. Study limitations are discussed, and future research recommendations are provided.

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          Most cited references18

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          Using thematic analysis in psychology

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            Are We There Yet? Data Saturation in Qualitative Research

            Failure to reach data saturation has an impact on the quality of the research conducted and hampers content validity. The aim of a study should include what determines when data saturation is achieved, for a small study will reach saturation more rapidly than a larger study. Data saturation is reached when there is enough information to replicate the study when the ability to obtain additional new information has been attained, and when further coding is no longer feasible. The following article critiques two qualitative studies for data saturation: Wolcott (2004) and Landau and Drori (2008). Failure to reach data saturation has a negative impact on the validity on one’s research. The intended audience is novice student researchers.
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              Carrier matching and collective socialization in community genetics: Dor Yeshorim and the reinforcement of stigma.

              Dor Yeshorim, the premarital carrier testing program designed and implemented by the ultra-orthodox Jewish community, has succeeded in generating high uptake thus considerably reducing the number of children born with genetic diseases. Those critical of the program stress its directive and coercive features which are said to compromise personal autonomy, while those in favor emphasize its efficiency, cultural fit, and the reduction of stigma. This debate has so far, however, been addressed only from a top-down view representing the theories of community leaders and bioethicists, while the actual meaning and practice of carrier matching as experienced by community members have remained unexplored. Based on interviews with 24 ultra-orthodox women and 5 matchmakers in Israel, as well as on observations of instructions in the community, this exploratory study shows how Dor Yeshorim has been selectively incorporated into the traditional matchmaking process. We examine the unintended consequences of this selective assimilation, namely how messages that propagate ignorance and fear, as well as misunderstandings regarding the genetic basis of carrier matching, reinforce the continuing stigmatization of presumed carriers. The paper concludes by discussing the findings in the broader context of the social analysis of the ethics of community genetics.
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                Author and article information

                Contributors
                SimaZa@Ariel.ac.il
                sarazalcberg@gmail.com
                Journal
                J Relig Health
                J Relig Health
                Journal of Religion and Health
                Springer US (New York )
                0022-4197
                1573-6571
                23 May 2023
                : 1-18
                Affiliations
                [1 ]GRID grid.411434.7, ISNI 0000 0000 9824 6981, School of Social Work, , Ariel University, ; Ariel, Israel
                [2 ]GRID grid.443085.e, ISNI 0000 0004 0366 7759, Hadassah Academic College, ; Jerusalem, Israel
                [3 ]GRID grid.12136.37, ISNI 0000 0004 1937 0546, Religion Studies Tel Aviv University, ; Tel Aviv, Israel
                [4 ]The SDU-TAU Joint Institute for Jewish and Israel Studies, Tel Aviv, Israel
                Author information
                http://orcid.org/0000-0001-6551-1096
                Article
                1833
                10.1007/s10943-023-01833-4
                10204667
                37219660
                d5ac98ae-2d92-4f6b-9d4b-c6873bfa77c5
                © The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature 2023, Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

                This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.

                History
                : 8 May 2023
                Categories
                Original Paper

                Sociology
                premarital genetic test,health behaviors,religious minorities,ultra-orthodox
                Sociology
                premarital genetic test, health behaviors, religious minorities, ultra-orthodox

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