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

Aviad E. Raz, Yafa Vizner

Research output: Contribution to journalArticlepeer-review

62 Scopus citations

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.

Original languageEnglish
Pages (from-to)1361-1369
Number of pages9
JournalSocial Science and Medicine
Volume67
Issue number9
DOIs
StatePublished - 1 Nov 2008

Keywords

  • Bioethics
  • Community genetics
  • Israel
  • Premarital carrier testing
  • Religion
  • Stigmatization

ASJC Scopus subject areas

  • Health(social science)
  • History and Philosophy of Science

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