"Donating with eyes shut": attitudes regarding DNA donation to a large-scale biobank in Israel. Issue 1 (2nd January 2022)

• Record Type: Journal Article
• Authors: Raz, Aviad; Hashiloni-Dolev, Yael
• Is Part Of: New genetics and society. Volume 41:Issue 1(2022)
• Page Start: 47
• Page End: 65
• Publication Date: 2022-01-02
• Subjects: biobanking -- DNA donation -- trust -- Israel -- trustworthiness; Genetic engineering -- Social aspects -- Periodicals; Biotechnology -- Social aspects -- Periodicals; 660.65
• DOI: 10.1080/14636778.2021.2007066
• Languages: English
• ISSNs: 1463-6778

Abstract

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.