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基因筛查预防性基因组筛查研究的在线教育与电子知情同意书

Online Education and e-Consent for GeneScreen, a Preventive Genomic Screening Study.

作者信息

Cadigan R Jean, Butterfield Rita, Rini Christine, Waltz Margaret, Kuczynski Kristine J, Muessig Kristin, Goddard Katrina A B, Henderson Gail E

机构信息

Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

出版信息

Public Health Genomics. 2017;20(4):235-246. doi: 10.1159/000481359. Epub 2017 Oct 26.

Abstract

BACKGROUND

Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants' perceived ease when deciding to join and their understanding of key study features.

METHODS

Individuals were recruited via mailings that directed them to a website where they could learn more about GeneScreen, consent to participate, and complete a survey.

RESULTS

Participants found it easy to decide to join GeneScreen and had a good understanding of study features. Multiple regression analyses revealed that ease of deciding to join was related to confidence in one's genetic self-efficacy, limited concerns about genetic screening, trust in and lack of frustration using the website, and the ability to spend a limited time on the website. Understanding of study features was related to using the Internet more frequently and attaining more information about GeneScreen conditions.

CONCLUSIONS

The ease of deciding to join a genomic screening study and comprehension of its key features should be treated as different phenomena in research and practice. There is a need for a more nuanced understanding of how individuals respond to web-based consent information.

摘要

背景

在线研究招募越来越普遍,但我们对以这种方式参与研究的决策过程知之甚少。在基因筛查研究(GeneScreen)中,该研究利用在线教育和知情同意流程,我们调查了参与者在决定加入时的感知易用性以及他们对关键研究特征的理解。

方法

通过邮件招募个体,引导他们访问一个网站,在该网站上他们可以了解更多关于基因筛查研究的信息、同意参与并完成一项调查。

结果

参与者发现决定加入基因筛查研究很容易,并且对研究特征有很好的理解。多元回归分析显示,决定加入的易用性与对自身基因自我效能的信心、对基因筛查的有限担忧、对网站的信任以及使用网站时没有挫败感,以及在网站上花费有限时间的能力有关。对研究特征的理解与更频繁地使用互联网以及获取更多关于基因筛查研究条件的信息有关。

结论

在研究和实践中,决定加入基因筛查研究的易用性和对其关键特征的理解应被视为不同的现象。需要更细致地了解个体对基于网络的知情同意信息的反应。

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