条件信任作为推动公众参与韩国生物大数据国家项目的推动力
Jae Sun Kim1, Seohyun Kim2,3, Cheyeon Lee2,4
1College of Law, Dongguk University, Seoul, Republic of Korea.
Frontiers in genetics
|January 20, 2026
概括
公众对生物数据研究的信任取决于透明的数据使用和治理. 个人利益显著地推动了参与,而不是公共利益,这凸显了对量身定制的参与战略的需要.
科学领域:
- 生物医学研究的研究.
- 公共卫生 公共卫生
- 数据治理数据治理
背景情况:
- 公共信任对于生物数据研究的成功至关重要.
- 国家生物大数据项目 (NPBBD) 旨在建立一个大型队列.
- 了解公众对同意,治理和利益的看法对于参与至关重要.
研究的目的:
- 确定公众参与NPBBD的动机因素.
- 评估公众意识和参与生物数据研究的驱动因素.
- 从参与者的角度来界定信任的条件.
主要方法:
- 一项基于网络和移动的调查在韩国1027名成年人中进行.
- 调查问卷评估了意识,参与意愿,担忧和偏好.
- 收集了关于社会人口统计学因素和参与动机的数据.
主要成果:
- 只有15.1%的人知道NPBBD; 49.1%的人承认"生物银行".
- 个人利益 (60.9%) 的参与意愿高于公共利益 (29.9%).
- 关键问题包括数据泄露和滥用;优先考虑的是动态同意和透明治理.
结论:
- 公共参与生物数据研究受到个人和公共利益的平衡的影响.
- 透明的治理,关于数据使用的明确信息和动态的同意对于建立信任至关重要.
- 需要量身定制的战略来加强公众参与和参与像NPBBD这样的大规模生物数据项目.
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