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与中低收入国家数据共享相关的问题和挑战:来自泰国研究人员的观点。

Issues and Challenges Associated with Data-Sharing in LMICs: Perspectives of Researchers in Thailand.

机构信息

1Department of Tropical Hygiene, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.

2Office of Research Services, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.

出版信息

Am J Trop Med Hyg. 2020 Jul;103(1):528-536. doi: 10.4269/ajtmh.19-0651. Epub 2020 May 7.

Abstract

Data-sharing helps advance scientific research and assures the benefits of research data are maximized. Previous work has highlighted ethical challenges, especially in low- and middle-income countrie (LMIC) countries. This study examined the views of researchers in a middle-income country, Thailand, regarding the most important data-sharing challenges. The target researchers worked in biomedical and related research. The survey was distributed to 38 academic and health-science institutes, 18 university hospitals, 84 nonuniversity hospitals, and 22 research institutes across Thailand; 229 researchers in clinical/basic and social/behavioral sciences, and pubxxlic health/policy participated. Thai researchers were less concerned with informed consent and the feasibility of conducting research and sharing data, focusing on the importance of safeguards when handling data, including transfer to others, and possible lack of control over subsequent data use. The respondents felt that researchers should decide what types of project data are shareable and which data are likely useful to the scientific community. They were more concerned with appropriate acknowledgment and protecting the legal rights of the primary data collectors and providers. Although they had concerns about data access conditions, they rated sharing sufficient data and metadata to reproduce the analysis of the primary outcomes as highly important. These results are important for future efforts of the LMIC countries to develop efficient data-sharing frameworks and establish institutional data access committees. They highlight the importance, for the sustainability and fairness of these efforts, to ensure that parties in LMIC countries receive appropriate credit and are involved in determining where/when/how their data may be used.

摘要

数据共享有助于推进科学研究,并确保研究数据的效益最大化。先前的工作强调了伦理挑战,尤其是在中低收入国家(LMIC)。本研究调查了泰国(一个中等收入国家)研究人员对最重要的数据共享挑战的看法。目标研究人员从事生物医学和相关研究。该调查分发给泰国的 38 个学术和健康科学机构、18 所大学医院、84 所非大学医院和 22 个研究所;来自临床/基础和社会/行为科学以及公共卫生/政策领域的 229 名研究人员参与了调查。泰国研究人员较少关注知情同意和研究及数据共享的可行性,而是更关注处理数据时的保障措施的重要性,包括数据向他人的转移以及对后续数据使用缺乏控制的可能性。受访者认为,研究人员应该决定哪些类型的项目数据是可共享的,以及哪些数据可能对科学界有用。他们更关注适当的认可和保护原始数据收集者和提供者的合法权利。尽管他们对数据访问条件表示担忧,但他们认为共享足够的数据和元数据以重现主要结果的分析非常重要。这些结果对 LMIC 国家未来制定高效的数据共享框架和建立机构数据访问委员会的努力非常重要。它们强调了为确保 LMIC 国家的各方获得适当的认可并参与确定其数据可以在何处/何时/如何使用,这些努力的可持续性和公平性的重要性。

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