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Carrier matching and collective socialization in community genetics: Dor Yeshorim and the reinforcement of stigma

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  • Raz, Aviad E.
  • Vizner, Yafa

Abstract

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.

Suggested Citation

  • Raz, Aviad E. & Vizner, Yafa, 2008. "Carrier matching and collective socialization in community genetics: Dor Yeshorim and the reinforcement of stigma," Social Science & Medicine, Elsevier, vol. 67(9), pages 1361-1369, November.
    • Handle: RePEc:eee:socmed:v:67:y:2008:i:9:p:1361-1369
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    References listed on IDEAS

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    1. Raz, Aviad, 2004. ""Important to test, important to support": attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel," Social Science & Medicine, Elsevier, vol. 59(9), pages 1857-1866, November.
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    Cited by:

    1. Frumkin, Ayala & Raz, Aviad E. & Plesser-Duvdevani, Morasha & Lieberman, Sari, 2011. ""The Most Important Test You’ll Ever Take"?: Attitudes toward confidential carrier matching and open individual testing among modern-religious Jews in Israel," Social Science & Medicine, Elsevier, vol. 73(12), pages 1741-1747.
    2. Ivry, Tsipy & Teman, Elly & Frumkin, Ayala, 2011. "God-sent ordeals and their discontents: Ultra-orthodox Jewish women negotiate prenatal testing," Social Science & Medicine, Elsevier, vol. 72(9), pages 1527-1533, May.

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