TY - JOUR
T1 - “Donating with eyes shut”
T2 - attitudes regarding DNA donation to a large-scale biobank in Israel
AU - Raz, Aviad
AU - Hashiloni-Dolev, Yael
N1 - Publisher Copyright:
© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
PY - 2021/1/1
Y1 - 2021/1/1
N2 - DNA collection raises ethical, legal, and social issues around privacy, consent, participatory science, benefits and risks, biodata governance, and, ultimately, trust. While there is a consensus that DNA biobanks’ success depends on public trust, more evidence is needed regarding the determinants, production, and preservation of such trust. We draw on 14 semi-structured interviews with participants–seven people who donated DNA to an Israeli biobank, and seven who refused to donate; as well as on two focus groups with members of the general public. Our findings call into question the relationship between trust/trustworthiness and donation, suggesting moral strategies termed by respondents as “donating with eyes shut.” We conclude by discussing how DNA donation is built on a mixture of attitudes combining criticism, optimism, resistance, and avoiding responsibility as a pragmatic solution to the unresolved conflicts in sharing one’s DNA.
AB - DNA collection raises ethical, legal, and social issues around privacy, consent, participatory science, benefits and risks, biodata governance, and, ultimately, trust. While there is a consensus that DNA biobanks’ success depends on public trust, more evidence is needed regarding the determinants, production, and preservation of such trust. We draw on 14 semi-structured interviews with participants–seven people who donated DNA to an Israeli biobank, and seven who refused to donate; as well as on two focus groups with members of the general public. Our findings call into question the relationship between trust/trustworthiness and donation, suggesting moral strategies termed by respondents as “donating with eyes shut.” We conclude by discussing how DNA donation is built on a mixture of attitudes combining criticism, optimism, resistance, and avoiding responsibility as a pragmatic solution to the unresolved conflicts in sharing one’s DNA.
KW - DNA donation
KW - Israel
KW - biobanking
KW - trust
KW - trustworthiness
UR - http://www.scopus.com/inward/record.url?scp=85121147505&partnerID=8YFLogxK
U2 - 10.1080/14636778.2021.2007066
DO - 10.1080/14636778.2021.2007066
M3 - Article
AN - SCOPUS:85121147505
JO - New Genetics and Society
JF - New Genetics and Society
SN - 1463-6778
ER -