“Donating with eyes shut”: attitudes regarding DNA donation to a large-scale biobank in Israel
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, p...
Main Authors: | , |
---|---|
Format: | Article |
Language: | English |
Published: |
Taylor & Francis Group
2022-01-01
|
Series: | New Genetics and Society |
Subjects: | |
Online Access: | http://dx.doi.org/10.1080/14636778.2021.2007066 |
Summary: | 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. |
---|---|
ISSN: | 1463-6778 1469-9915 |