Views on disability and prenatal testing among families with Down syndrome and disability activists: A comparative analysis of interviews from Germany and Israel

Tamar Nov-Klaiman, Marina Frisman, Aviad E. Raz, Christoph Rehmann-Sutter

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

Abstract

The prenatal genetic testing arena has witnessed great changes over the past decades and has been the focus of extensive discussion of its ethical, legal, and social implications. Germany and Israel were previously known for strongly contrasting regulations and attitudes of both professionals and laypeople towards genetic testing. Based on qualitative analysis of 37 semi-structured interviews, this study compares German and Israeli family members of individuals with Down syndrome and disability activists, thereby examining the interplay between lived experience and cultural scripts and their impact on the formation of personal views toward disability and prenatal testing. We have found that the differences between Germany and Israel remain, despite the emergence of new technologies, and that family members and disability activists reflect the norms of their socio-cultural environments, thereby emphasising the role society plays in shaping the views of those with direct experience of disability.

Original languageEnglish
Article number115021
JournalSocial Science and Medicine
Volume303
DOIs
StatePublished - 1 Jun 2022

Keywords

  • Down syndrome
  • Germany
  • Israel
  • Non-invasive prenatal testing (NIPT)
  • Parental responsibility
  • Prenatal genetic diagnosis

ASJC Scopus subject areas

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

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