Beskow Laura M, Smolek Sondra J
Duke University, USA.
J Empir Res Hum Res Ethics. 2009 Sep;4(3):99-111. doi: 10.1525/jer.2009.4.3.99.
DISCLOSURE OF INDIVIDUAL RESEARCH results to research participants has been the subject of professional guidelines as well as scholarly commentary, yet controversy remains. To gather data on participant perspectives, we interviewed 40 individuals from the Durham, North Carolina area about a biorepository consent form and conducted an in-depth analysis of responses to a series of questions concerning access to research results. Cross-cutting themes emerged about (1) the nature of research; (2) the nature of research results; (3) expectations concerning access to research results; and (4) practical issues in providing access to research results. Our findings highlight the importance for sound policy development of soliciting stakeholder input, and exploring the complexities behind their evaluations.
向研究参与者披露个人研究结果一直是专业指南以及学术评论的主题，但争议仍然存在。为了收集参与者的观点数据，我们采访了北卡罗来纳州达勒姆地区的40个人，了解一份生物样本库知情同意书，并对一系列关于获取研究结果的问题的回答进行了深入分析。出现了一些贯穿各领域的主题，包括：（1）研究的性质；（2）研究结果的性质；（3）关于获取研究结果的期望；以及（4）提供研究结果获取途径方面的实际问题。我们的研究结果强调了征求利益相关者意见以及探索其评估背后复杂性对于制定合理政策的重要性。
