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首页> 外文期刊>Journal of empirical research on human research ethics : >Information that should be given to HIV cohort participants during ongoing research: The viewpoints of patient representatives and research professionals
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Information that should be given to HIV cohort participants during ongoing research: The viewpoints of patient representatives and research professionals

机译：在进行中的研究期间应向艾滋病毒队列参与者提供的信息：患者代表和研究专业人员的观点

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摘要

while investigators have a duty to provide research participants with summary findings at the end of a study, providing general information during the course of research is rarely considered. However, this raises an important ethical issue in the context of long-term studies such as cohorts or biobanks. We investigated this issue in the context of two ANRS cohorts of HIV-infected patients, AQUITAINE and COPILOTE. Face-to-face interviews were conducted with HIV patient representatives and research professionals concerning the delivery of information in the course of the research. Respondents stated that participants wish to be informed of research results (both aggregate and individual) but also expect general information about the cohort itself, research progression, and what their participation may provide. It was concluded that information provided during the course of the research may help participants to distinguish between care and research. The essential role of clinicians-investigators in providing information was emphasized.
机译：尽管研究人员有责任在研究结束时向研究参与者提供摘要结果，但很少考虑在研究过程中提供一般信息。但是，这在诸如队列或生物库之类的长期研究中提出了一个重要的伦理问题。我们在两个被HIV感染的ANRS队列中，AQUITAINE和COPILOTE调查了这个问题。与HIV患者代表和研究专业人士进行了面对面的访谈，涉及研究过程中的信息传递。受访者表示，参与者希望被告知研究结果（无论是总体研究还是个人研究），但也希望获得有关队列本身，研究进展以及他们的参与可能提供的一般信息。结论是，在研究过程中提供的信息可以帮助参与者区分护理和研究。强调了临床医生-研究人员在提供信息方面的重要作用。

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