TY - JOUR
T1 - Views on disability and prenatal testing among families with Down syndrome and disability activists
T2 - A comparative analysis of interviews from Germany and Israel
AU - Nov-Klaiman, Tamar
AU - Frisman, Marina
AU - Raz, Aviad E.
AU - Rehmann-Sutter, Christoph
N1 - Publisher Copyright:
© 2022 The Authors
PY - 2022/6/1
Y1 - 2022/6/1
N2 - 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.
AB - 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.
KW - Down syndrome
KW - Germany
KW - Israel
KW - Non-invasive prenatal testing (NIPT)
KW - Parental responsibility
KW - Prenatal genetic diagnosis
UR - http://www.scopus.com/inward/record.url?scp=85130369991&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2022.115021
DO - 10.1016/j.socscimed.2022.115021
M3 - Article
C2 - 35588654
AN - SCOPUS:85130369991
SN - 0277-9536
VL - 303
JO - Social Science and Medicine
JF - Social Science and Medicine
M1 - 115021
ER -