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 - Funding Information:
This study received funding from the Van Leer Jerusalem Institute and the Israel Academy of Sciences and Humanities. We wish to thank all the study participants and especially our research assistants, Nurit Dessau and Shelly Reisner Vain. We are grateful to Dr. Hagai Boas from the Van Leer Jerusalem Institute for his continuing support of this project.
Publisher Copyright:
© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
PY - 2022/1/1
Y1 - 2022/1/1
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
SN - 1463-6778
VL - 41
SP - 47
EP - 65
JO - New Genetics and Society
JF - New Genetics and Society
IS - 1
ER -
