Research Participant Views regarding Qualitative Data Sharing.
Research Participant Views regarding Qualitative Data Sharing.
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DOI：
10.1002/eahr.500044
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发表时间：
2020-03-01
影响因子：
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通讯作者：
DuBois, James M
中科院分区：
文献类型：
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作者：
Mozersky, Jessica;Parsons, Meredith;DuBois, James M
我们在美国没有发现任何研究探讨了研究参与者对分享定性数据的看法。我们提出了对30名参与敏感定性研究的个人的访谈结果，以探讨他们对定性数据共享的理解和关注。绝大多数人支持共享定性数据，只要他们的数据不被识别，并且只在研究人员之间共享。然而，他们提出了对如果数据没有充分去识别的保密性的担忧，以及如果数据在研究界之外共享的二次用户滥用的担忧。然而，这些担忧并没有阻止他们参与研究。值得注意的是，参与者希望他们的数据能够被共享，并且可能已经预料到或假设这已经发生了。虽然许多人无法回忆起他们参与的研究的数据共享计划的细节，但他们相信研究人员和机构会妥善处理数据共享。如果个人将数据共享视为他们参与定性研究的延伸或组成部分，那么研究人员可能比以前认为的更有义务共享定性数据。迫切需要指导方针和工具，以协助研究人员和机构审查委员会成员在道德和负责任的定性数据共享。
We found no studies in the United States that explored research participants' perspectives about sharing their qualitative data. We present findings from interviews with 30 individuals who participated in sensitive qualitative studies to explore their understanding and concerns regarding qualitative data sharing. The vast majority supported sharing qualitative data so long as their data were deidentified and shared only among researchers. However, they raised concerns about confidentiality if the data were not adequately deidentified and about misuse by secondary users if data were shared beyond the research community. These concerns, though, did not deter them from participating in research. Notably, participants hoped their data would be shared and may have expected or assumed this was already happening. While many could not recollect details about data-sharing plans for studies in which they participated, they trusted researchers and institutions to appropriately handle data sharing. If individuals view data sharing as an extension or integral part of their participation in qualitative research, then researchers may have a stronger obligation to share qualitative data than previously thought. Guidelines and tools to assist researchers and institutional review board members in ethical and responsible qualitative data sharing are urgently needed.