Abstract
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.
Original language | English |
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Pages (from-to) | 47-65 |
Number of pages | 19 |
Journal | New Genetics and Society |
Volume | 41 |
Issue number | 1 |
DOIs | |
State | Published - 1 Jan 2022 |
Keywords
- DNA donation
- Israel
- biobanking
- trust
- trustworthiness
ASJC Scopus subject areas
- Issues, ethics and legal aspects
- Health(social science)
- Genetics
- Health Policy