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

  • 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 ofThe 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.show moreshow less

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Metadaten
Author:Tamar Nov-KlaimanORCiDGND, Marina Frisman, Aviad E. Raz, Christoph Rehmann-Sutter
URN:urn:nbn:de:bvb:384-opus4-1127546
Frontdoor URLhttps://opus.bibliothek.uni-augsburg.de/opus4/112754
ISSN:0277-9536OPAC
Parent Title (English):Social Science & Medicine
Publisher:Elsevier BV
Type:Article
Language:English
Year of first Publication:2022
Publishing Institution:Universität Augsburg
Release Date:2024/04/30
Volume:303
First Page:115021
DOI:https://doi.org/10.1016/j.socscimed.2022.115021
Institutes:Medizinische Fakultät
Medizinische Fakultät / Professur für Ethik der Medizin
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Licence (German):CC-BY-NC-ND 4.0: Creative Commons: Namensnennung - Nicht kommerziell - Keine Bearbeitung (mit Print on Demand)