Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis
Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis
复制标题
DOI：
10.1177/1556264619888365
复制
发表时间：
2019-11-18
影响因子：
1.3
通讯作者：
Otten, Sabine
中科院分区：
文献类型：
--
作者：
Broekstra, Reinder;Aris-Meijer, Judith;Otten, Sabine
数字数据的指数级增长以及参与人类研究的呼声引发了人们对个人何时以及为何自愿提供个人数据的质疑。我们对生物银行的前参与者，参与者和非参与者进行了36次深入访谈，以确定影响人类研究集中式大规模数据库信任的关键因素。我们的研究结果表明，信任在很大程度上取决于这样的数据存储库是否有利于公众，数据收集者的利益，收集的数据的特点，并保留对个人数据的控制知情同意的应用。对数据储存库的目的和范围的关切似乎影响了退出。我们的研究结果强调了与人类研究中的数据收集和同意程序有关的伦理和实际问题。
Exponential increases in digital data and calls for participation in human research raise questions about when and why individuals voluntarily provide personal data. We conducted 36 in-depth interviews with ex-participants, participants, and nonparticipants in a biobank to identify key factors influencing trust in centralized large-scale data repository for human research. Our findings indicated that trust depends strongly on whether such data repository benefits the public, the interests of data collectors, the characteristics of the collected data, and application of informed consent for retaining control over personal data. Concerns about the aims and range of data repository appeared to influence withdrawal of participation. Our findings underscore ethical and practical issues relating to data collection and consent procedures in human research.