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定性数据共享:参与者的理解、动机和同意。

Qualitative Data Sharing: Participant Understanding, Motivation, and Consent.

机构信息

5916Guttmacher Institute, New York, NY, USA.

Qualitative Data Repository, 2029Syracuse University, Syracuse, NY, USA.

出版信息

Qual Health Res. 2022 Jan;32(1):182-191. doi: 10.1177/10497323211054058. Epub 2021 Dec 1.

Abstract

Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants' willingness to, understanding of, and motivations for data sharing. As part of a larger qualitative study on abortion reporting, we conducted interviews with 64 cisgender women in two states in early 2020 and asked for consent to share de-identified data. At the end of interviews, we asked participants to reflect on their motivations for agreeing or declining to share their data. The vast majority of respondents consented to data sharing and reported that helping others was a primary motivation for agreeing to share their data. However, a substantial number of participants showed a limited understanding of the concept of "data sharing." Additional research is needed on how to improve participants' understanding of data sharing and thus ensure fully informed consent.

摘要

人们越来越期望分享研究的基础数据,但对于参与者(尤其是那些参与定性研究的参与者)对数据共享请求的反应的研究还很有限。我们研究了研究参与者对数据共享的意愿、理解和动机。作为一项关于堕胎报告的更大规模定性研究的一部分,我们在 2020 年初在两个州对 64 名顺性别女性进行了访谈,并请求她们同意分享去识别数据。在访谈结束时,我们要求参与者反思他们同意或拒绝分享数据的动机。绝大多数受访者同意数据共享,并表示帮助他人是他们同意分享数据的主要动机。然而,相当数量的参与者对“数据共享”的概念理解有限。需要进一步研究如何提高参与者对数据共享的理解,从而确保他们知情同意。

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