Research Participants' Understanding of and Reactions to Certificates of Confidentiality.
Research Participants' Understanding of and Reactions to Certificates of Confidentiality.
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DOI：
10.1080/21507716.2013.813596
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发表时间：
2014-01-01
期刊：
影响因子：
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通讯作者：
Ammarell N
中科院分区：
文献类型：
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作者：
Beskow LM;Check DK;Ammarell N
保密证书旨在通过保护在法律的诉讼中不被强制披露身份数据来促进参与关键的公共卫生研究，但对同意书中证书描述的影响知之甚少。为了获得初步的见解，我们在北卡罗来纳州的达勒姆对50名艾滋病毒阳性者进行了定性访谈，以探讨他们对证书描述的主观理解，以及他们的反应是否因接受标准与简化描述而有所不同。大多数受访者对证书信息既不放心也不担心，大多数受访者表示，这不会影响他们参与或提供真实信息的意愿。然而，与那些收到简化描述的人相比，更多阅读标准描述的人表示，这引起了新的担忧，他们参与的可能性会降低，而且他们可能不那么积极。大多数受访者表示，他们发现证书的描述很清楚，但标准组的参与者经常发现特定的单词和短语令人困惑，而认证组的参与者更经常质疑信息的实质内容。有效的知情同意需要理解和自愿。我们的研究结果强调了开发简单准确的证书和其他保密保护的同意描述的重要性。这些定性结果提供了丰富的细节，为更大规模的定量研究提供了信息，从而可以进行进一步的严格比较。
Certificates of Confidentiality are intended to facilitate participation in critical public health research by protecting against forced disclosure of identifying data in legal proceedings, but little is known about the effect of Certificate descriptions in consent forms. To gain preliminary insights, we conducted qualitative interviews with 50 HIV-positive individuals in Durham, North Carolina to explore their subjective understanding of Certificate descriptions and whether their reactions differed based on receiving a standard versus simplified description. Most interviewees were neither reassured nor alarmed by Certificate information, and most said it would not influence their willingness to participate or provide truthful information. However, compared with those receiving the simplified description, more who read the standard description said it raised new concerns, that their likelihood of participating would be lower, and that they might be less forthcoming. Most interviewees said they found the Certificate description clear, but standard-group participants often found particular words and phrases confusing, while simplified-group participants more often questioned the information’s substance. Valid informed consent requires comprehension and voluntariness. Our findings highlight the importance of developing consent descriptions of Certificates and other confidentiality protections that are simple and accurate. These qualitative results provide rich detail to inform a larger, quantitative study that would permit further rigorous comparisons.