Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia.
Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
PLoS One. 2018 Sep 27;13(9):e0204572. doi: 10.1371/journal.pone.0204572. eCollection 2018.
The internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.
Academic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.
Sixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children's vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.
Engaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.
互联网是家庭和儿童研究中越来越受欢迎的工具，有人认为它带来了新的伦理挑战，但很少有研究系统地评估了在网上招募家长和儿童参与研究的伦理问题。本范围综述旨在确定并整合有关在网上招募、保留和追踪家庭和儿童研究中报告的伦理问题的证据，并为互联网研究确定伦理准则。
使用电子学术数据库（Scopus、PsycINFO、Embase、ERIC、CINAHL 和 Informit）和手动搜索 2006 年 1 月至 2016 年 2 月期间发表的英文文章的参考文献列表，对学术文献进行了搜索。使用 Google 搜索灰色文献以确定相关的伦理准则。
经过筛选 3537 篇标题和摘要以及 205 篇全文文章后，共纳入 65 篇学术文章。大多数文章报告使用互联网招募参与者（88%），很少有文章报告在线保留（12%）或追踪（10%）。40%的文章评论了伦理问题；大多数文章除了一般同意或批准程序外，没有讨论伦理问题。一些伦理问题是专门针对在线招募未成年人的，包括父母同意、年龄验证和儿童脆弱性。其他问题适用于在线招募任何研究参与者，包括隐私和保密性、知情同意和互联网接入的差异。确定了 5 项专业准则和 10 项大学互联网研究伦理准则。很少有学术文章（5%）报告使用这些准则。
在线招募家庭和儿童参与研究带来了独特的挑战，需要仔细考虑。虽然研究人员认为自己有责任确保研究的道德性，但缺乏使用现有准则和有限的学术文献表明，互联网研究正在进行，而没有适当的指导。我们建议广泛传播伦理准则，并鼓励研究人员报告使用互联网招募家庭和儿童参与研究的方法学和伦理问题。
