Mozersky Jessica, Parsons Meredith, Walsh Heidi, Baldwin Kari, McIntosh Tristan, DuBois James M
Assistant professor of medicine at the Bioethics Research Center at Washington University School of Medicine.
Senior public health research technician at the Bioethics Research Center at Washington University School of Medicine.
Ethics Hum Res. 2020 Mar;42(2):13-27. doi: 10.1002/eahr.500044.
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.
我们在美国未找到探讨研究参与者对分享其定性数据看法的研究。我们展示了对30名参与敏感定性研究的个体进行访谈的结果，以探究他们对定性数据分享的理解和担忧。绝大多数人支持分享定性数据，只要他们的数据经过去识别处理且仅在研究人员之间分享。然而，如果数据未得到充分去识别，他们会担心保密性；如果数据在研究界之外分享，他们会担心二次使用者滥用。不过，这些担忧并未阻止他们参与研究。值得注意的是，参与者希望他们的数据能被分享，并且可能已经预期或假定这已经在发生。虽然许多人回忆不起他们参与的研究的数据分享计划的细节，但他们信任研究人员和机构能妥善处理数据分享。如果个体将数据分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之前认为的有更强的义务分享定性数据。迫切需要协助研究人员和机构审查委员会成员进行符合伦理和负责任的定性数据分享的指导方针和工具。
