Ethical issues in using the internet to engage participants in family and child research: A scoping review

Abstract

BackgroundThe 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.MethodsAcademic 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.ResultsSixty-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.ConclusionsEngaging 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.

Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review

“…One scoping review conducted by Hokke et al [19] which explored the ethical issues of digital data collection in research with minors (i.e., using the internet to recruit prospective participants for family and child research) also discussed the challenges of obtaining consent and assent. In their review of research, they concluded that minor consent and parental consent was more complex and ethically challenging when facilitated through online means, rather than face to face interaction [19]. Many of the studies reviewed by the authors [19] noted that obtaining consent through online means posed a risk that minors would fraudulently complete their parents' online consent form.…”

“…In their review of research, they concluded that minor consent and parental consent was more complex and ethically challenging when facilitated through online means, rather than face to face interaction [19]. Many of the studies reviewed by the authors [19] noted that obtaining consent through online means posed a risk that minors would fraudulently complete their parents' online consent form. To circumvent this risk, they [19] contacted prospective participants online, and then obtained verbal consent over the phone to assess parents' and minors' understanding of the research aims, procedures, and risks using back-questioning techniques.…”

“…Depending on the topic of interest, Hokke et al [19] noted that waiving parental consent might in fact be a methodological and ethical necessity. For example, two US studies waived parental consent out of ethical necessity [20,21] to collect digital data from gay and bisexual minors as they were considered to be at risk if they had to disclose their sexual identity to their parents as part of the consent process.…”

“…For example, two US studies waived parental consent out of ethical necessity [20,21] to collect digital data from gay and bisexual minors as they were considered to be at risk if they had to disclose their sexual identity to their parents as part of the consent process. Further, where the law required parental consent for a minor's participation in research, researchers identified this as a possible deterrent for minors' participation as some minors may be reluctant to ask their parents for permission [19].…”

“…When considering the cultural norms of the participants involved in research with social media, two studies recognized that "digital natives" [19], in other words, minors who are born into digital environments and learn how to use digital technologies from a young age, may conceptualize privacy differently than adults. For example, one article queried whether minors disclose private information on social media "without understanding or considering the permanence or far-reaching nature of online content, and without intending for their information to be used by others" [19]. While another mentioned that minors may disclose their private information on social media out of "naivety or ignorance" [37] rather than an intended disregard for their privacy and personal information.…”