“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...

Full description

Bibliographic Details
Main Authors: Aviad Raz, Yael Hashiloni-Dolev
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
Description
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