Purvis Rachel S, Long Christopher R, Eisenberg Leah R, Hester D Micah, Cunningham Thomas V, Holland Angel, Chatrathi Harish E, McElfish Pearl A
Office of Community Health and Research, University of Arkansas for Medical Sciences Northwest, Fayetteville, Arkansas, USA.
College of Medicine, University of Arkansas for Medical Sciences Northwest, Fayetteville, Arkansas, USA.
AJOB Empir Bioeth. 2020 Apr-Jun;11(2):104-113. doi: 10.1080/23294515.2020.1737980. Epub 2020 Mar 12.
Health researchers and health research participants support the sharing of research results; however, results are typically only shared through peer-reviewed publications. Few studies have investigated researchers' ethical concerns related to sharing results with research participants. An explanatory approach was used to explore the ethical concerns researchers may have with returning aggregate results to research participants. Researchers (N = 414) responded to an online survey of open-ended questions that allowed researchers to provide in-depth explanations regarding their responses to closed-ended questions. Across researchers, the mean percentage of studies for which ethical concerns were reported as a barrier to results sharing was 38.5% (SD= 30.7). Researchers' primary ethical concerns with returning results were articulated as an overarching desire to prevent harm to participants. Three broad ethical concerns emerged, each with underlying subthemes: 1) distress, 2) understanding, and 3) privacy. This is the first study to broadly explore researchers' ethical concerns with sharing aggregate research results with participants and reveals that researchers' ethical concerns are closely tied to the ethical obligation to do no harm. In order to increase results sharing, steps must be taken to help researchers understand how to minimize potential harm when sharing results.
健康研究人员和健康研究参与者支持研究结果的共享;然而,结果通常仅通过同行评审的出版物进行共享。很少有研究调查研究人员在与研究参与者分享结果方面的伦理问题。本研究采用一种解释性方法来探究研究人员在向研究参与者反馈汇总结果时可能存在的伦理问题。研究人员(N = 414)对一项开放式问题的在线调查做出了回应,该调查允许研究人员就其对封闭式问题的回答提供深入解释。在所有研究人员中,有38.5%(标准差 = 30.7)的研究报告称伦理问题是结果共享的障碍。研究人员在反馈结果时主要的伦理问题表现为防止对参与者造成伤害这一总体愿望。出现了三大伦理问题,每个问题都有潜在的子主题:1)困扰,2)理解,3)隐私。这是第一项广泛探究研究人员在与参与者分享汇总研究结果时的伦理问题的研究,结果表明研究人员的伦理问题与不造成伤害的伦理义务紧密相关。为了增加结果共享,必须采取措施帮助研究人员了解在分享结果时如何将潜在伤害降至最低。