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“Donating with eyes shut”: attitudes regarding DNA donation to a large-scale biobank in Israel
New Genetics and Society ( IF 1.8 ) Pub Date : 2021-12-03 , DOI: 10.1080/14636778.2021.2007066
Aviad Raz 1 , Yael Hashiloni-Dolev 1
Affiliation  

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.



中文翻译:

“闭眼捐赠”:对以色列大型生物库 DNA 捐赠的态度

DNA 收集引发了围绕隐私、同意、参与性科学、利益和风险、生物数据治理以及最终的信任的伦理、法律和社会问题。虽然人们一致认为 DNA 生物样本库的成功取决于公众的信任,但需要更多关于这种信任的决定因素、生产和维护的证据。我们对参与者进行了 14 次半结构化访谈——其中 7 人向以色列生物库捐赠了 DNA,7 人拒绝捐赠;以及与公众一起参加的两个焦点小组。我们的研究结果对信任/可信度与捐赠之间的关系提出了质疑,提出了被受访者称为“闭眼捐赠”的道德策略。最后,我们讨论了 DNA 捐赠如何建立在批评、乐观、抵抗、

更新日期:2021-12-03
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