Parents like me: biosociality and lay expertise in self-help groups of parents of screen-positive newborns

Aviad Raz, Yael Amano, Stefan Timmermans

Research output: Contribution to journalArticlepeer-review

9 Scopus citations


This study focuses on patterns of communication and interaction for peer support, which develop among parents of screen-positive children in the socio-medical space created by the diagnostic uncertainty of newborn screening, the limitations of established patient support groups and the daily challenges of screen-positive care management. Based on semi-structured interviews conducted in 2015–2017 with 34 Israeli parents whose child is screen positive, we describe and analyze the spontaneous grouping of parents using the WhatsApp instant messaging service for smartphones. These self-help groups did not reflect an attempt to forge an alternative movement of de-medicalization but rather to provide satisfactory answers to shared problems of care management under diagnostic uncertainty. These self-help groups are further discussed as a form of biosociality and lay expertise where elements of communication such as simplicity, reciprocity, and deliberative democracy serve as a complementary mirror-image of the asymmetrical patient–doctor communication.

Original languageEnglish
Pages (from-to)97-116
Number of pages20
JournalNew Genetics and Society
Issue number2
StatePublished - 3 Apr 2018


  • Israel
  • biosociality
  • diagnostic uncertainty
  • newborn screening
  • self-help groups

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Genetics
  • Health Policy


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