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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

*Korrespondierende/r Autor/-in für diese Arbeit

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.

OriginalspracheEnglisch
Aufsatznummer115021
ZeitschriftSocial Science and Medicine
Jahrgang303
ISSN0277-9536
DOIs
PublikationsstatusVeröffentlicht - 06.2022

Fördermittel

We are very thankful to all the participants of this study for sharing their insights and experiences. We thank Anika König and Stefan Reinsch for establishing the qualitative study design in Germany and for conducting the interviews there. For suggestions in the process of interpretation we thank Hannes Foth, Yael Hashiloni-Dolev and Christina Schües. This work was supported by Deutsche Forschungsgemeinschaft DFG (funding reference: SCHU 2846/2-1; RE 2951/3-1 ). We received funding from the German Research Foundation (DFG). We have no conflicts of interest to disclose.

UN SDGs

Dieser Output leistet einen Beitrag zu folgendem(n) Ziel(en) für nachhaltige Entwicklung

  1. SDG 3 – Gesundheit und Wohlergehen
    SDG 3 – Gesundheit und Wohlergehen
  2. SDG 4 – Qualitativ hochwertige Bildung
    SDG 4 – Qualitativ hochwertige Bildung
  3. SDG 5 – Gender Equality
    SDG 5 – Gender Equality
  4. SDG 10 – Weniger Ungleichheiten
    SDG 10 – Weniger Ungleichheiten
  5. SDG 16 – Frieden, Gerechtigkeit und verlässliche Institutionen
    SDG 16 – Frieden, Gerechtigkeit und verlässliche Institutionen

Strategische Forschungsbereiche und Zentren

  • Profilbereich: Zentrum für kulturwissenschaftliche Forschung Lübeck (ZKFL)

DFG-Fachsystematik

  • 1.23-01 Soziologische Theorie
  • 1.18-02 Theoretische Philosophie
  • 1.23-02 Empirische Sozialforschung
  • 2.22-20 Kinder- und Jugendmedizin

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