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 and Christoph Rehmann-Sutter

Social Science & Medicine, 2022, vol. 303, issue C

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.

Keywords: Prenatal genetic diagnosis; Non-invasive prenatal testing (NIPT); Down syndrome; Germany; Israel; Parental responsibility (search for similar items in EconPapers)
Date: 2022
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Persistent link: https://EconPapers.repec.org/RePEc:eee:socmed:v:303:y:2022:i:c:s0277953622003276

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DOI: 10.1016/j.socscimed.2022.115021

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