阿拉伯地区研究专业人员对临床研究中隐私问题的看法：一项探索性定性研究。
Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study.
机构信息
Cadi Ayyad University School of Medicine Community Medicine and Public Health Department, Marrakech, Morocco.
The American University in Cairo, Cairo, Egypt.
出版信息
BMC Med Ethics. 2020 Apr 15;21(1):27. doi: 10.1186/s12910-020-0456-9.
BACKGROUND
Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research.
METHODS
We adopted an exploratory qualitative approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes.
RESULTS
Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began (e.g., recruitment practices); during research (e.g., data collection and physical exams), and after the research (e.g., secondary use of data and data sharing). Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research.
CONCLUSIONS
Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research.
背景
保护研究参与者的隐私被广泛认为是临床研究的标准伦理要求之一。然而，研究专业人员如何看待隐私概念以及研究环境中需要隐私保护的情况尚不清楚。本研究旨在探讨来自阿拉伯国家的研究专业人员对临床研究中出现的隐私概念和范围的看法。
方法
我们采用了焦点小组讨论的探索性定性方法。我们招募了来自埃及和摩洛哥的参与研究的人员。我们通过一种持续比较的方法分析了焦点小组数据，该方法包括对转录访谈的仔细阅读，然后进行编码，然后确定主题和子主题。
结果
在 2016 年 8 月至 2018 年 7 月期间，我们进行了 9 次焦点小组讨论。受访者讨论了研究开始前（例如，招募实践）、研究期间（例如，数据收集和体检）和研究后（例如，数据的二次使用和数据共享）发生的一些隐私问题。受访者揭示了他们在临床和研究环境中对患者隐私的看法，并提到由于对临床护理的信任和受益，患者更有可能允许在临床环境中访问其隐私，而不是在研究环境中。受访者还建议对参与研究的人员进行数据保护培训。
结论
我们的研究表明，研究专业人员讨论了在研究的不同阶段存在的一系列隐私问题。我们建议 1）制定在招募过程中保护隐私的标准；2）为参与研究的人员提供关于在二次研究中保护数据安全的最佳实践的额外培训；3）进行一项涉及调查人员和 REC 成员的定量研究，以确定他们对研究中出现的隐私问题的知识、态度和实践；4）进行一项涉及患者的定量研究，以了解他们对研究中隐私问题的看法。
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