Given the increasing use of online methods, the research community will greatly benefit from more detailed documentation of the ethical and methodological issues encountered or considered and the actions taken to address them. Investigation, Conceptualization, For example, Moinian [58] conducted an ethnographic study of children’s diary entries within an online community to explore the online activities that children engaged in outside of their parents’ knowledge or control—a topic that made “the process of obtaining parents’ consent practically impossible” [58, p. 56]. Nineteen articles (48%) involving adolescents or children did not discuss parental consent procedures. Yes To verify participant age, researchers may need to directly contact interested participants, examine the age noted on participants’ social networking profiles or employ other age verification tools [59, 62, 70]. Both recognise that the guidelines should not be considered as complete and that ethical decision-making will continue to evolve as new online tools are developed and new issues emerge. No, PLOS is a nonprofit 501(c)(3) corporation, #C2354500, based in San Francisco, California, US, https://doi.org/10.1371/journal.pone.0204572, http://www.abs.gov.au/ausstats/abs@.nsf/mf/8146.0, http://satoriproject.eu/media/2.d.2-Internet-research-ethics.pdf, http://www.restore.ac.uk/orm/ethics/ethcontents.htm, https://www.brunel.ac.uk/__data/assets/pdf_file/0004/313798/Internet_guidelines.pdf, https://www.fau.edu/research/docs/policies/research-integrity/irb_guidelines_internet_research.pdf, https://www.research.psu.edu/irb/policies/guideline10, http://research.uconn.edu/irb/researcher-guide/computer-and-internet-based-research-involving-human-particpants/, https://www.rochester.edu/ohsp/documents/ohsp/pdf/policiesAndGuidance/Guideline_for_Internet_Based_Research.pdf, http://www.orei.qut.edu.au/human/guidance/internet.jsp, https://www.rch.org.au/uploadedFiles/Main/Content/ethics/Social%20Media%20Guidelines.pdf, http://cphs.berkeley.edu/internet_research.pdf, http://www.webster.edu/irb/policy/recommendations_for_use_of_online_surveys.html, http://plato.stanford.edu/entries/ethics-internet-research/, https://researchethicsblog.com/2014/09/16/a-call-for-new-rules-for-internet-based-research/. One article stressed the importance of considering “whether individuals who choose to engage in internet research may be more vulnerable to safety concerns than their offline counterparts”, as there is some evidence that frequent internet users have poorer mental health than others [59, p. 1120]. A narrative account of key findings is presented according to each ethical consideration identified. Care should also be taken to ensure that the chosen method of engagement is best for the participant, not the researcher, and to minimise the impact of disparities in internet access on participant inclusion or selection bias. To call attention to this, the consent form used Facebook terminology, explicitly stated that the anonymity and privacy of the participant could not be protected and instructed participants on how they could adjust their Facebook privacy settings to avoid inadvertent sharing of information. They also provided advice on how to minimise breaches in participant confidentiality and improve study legitimacy, including how to contact participants privately, prevent individuals or researchers inadvertently revealing their involvement in a study and to ensure that a traced participant is a correct match. Some recognised the advantages of obtaining verbal consent and assessing comprehension via telephone, although we question the viability of this approach with large samples and its utility in anonymous research. Conceptualization, It should be considered as supplemental and subordinate Writing – review & editing. Three articles reported on participants’ experiences of being traced using social media. We recognise articles in other disciplines not included in this review would inform family and child research. Yes Email was the next most common online method for recruitment (n = 14/51; 27%), with invitations sent to members of electronic mailing lists, listservs, research panels and registries. Obtaining parental consent via post or email for children engaged in research online had several limitations. Recruitment sources and success rates were reported by half of the studies using either a single (n = 8/18, 44%) or multiple methods of online recruitment (n = 3/6, 50%). The scoping review was conducted according to a 5-stage framework [29–31]: (1) identifying the research questions; (2) identifying the search strategy; (3) study selection; (4) charting the data; and (5) collating, summarising and reporting the results. endstream endobj startxref Writing – review & editing, Roles This can be achieved by encouraging broad dissemination and use of current guidelines and resources (e.g., [83, 97, 125]) across research institutes and ethics committees. Funding acquisition, Guidelines for Internet-Based Research 3 1. %PDF-1.3 Across the articles, there was little discourse on whether online research elevates risk among vulnerable people compared to offline research. In this document we outline some of the key ethics issues which researchers and research ethics committees (RECs) are advised to keep in mind when considering implementing or evaluating an IMR study. [101] provide comprehensive advice for the use of digital data in research. PLoS ONE 13(9): There is also limited capacity for researchers to ensure that participants are sufficiently informed [59], and a risk of parental consent forms being fraudulently signed by young participants or non-parents [34, 59, 64].
Increasingly, child and family researchers are using online methods to recruit, retain and trace participants [6, 11–13]. endstream endobj 141 0 obj <> endobj 142 0 obj <> endobj 143 0 obj <>stream The search process and results are summarised in Fig 1. The review aimed to assemble and summarise the ethical concerns and considerations reported in available literature and identify ethical issues unique to using the internet to recruit, retain and trace families and children in research. The participant samples for the original research articles were predominantly youths (n = 20/58, 34%; typically ranging in age from 15–25 years) or adolescents (n = 13/58, 22%; typically ranging in age from 11–18 years). Few academic articles (5%) reported using these guidelines. Concerns were also raised about the possibility of participants, potentially those who are young or vulnerable, unwittingly ‘outing’ themselves as research participants online. Investigation, broad scope, and wide readership – a perfect fit for your research every time. These included five professional guidelines developed by government bodies, societies and collaborative academic working groups (see Table 3) and ten university guidelines (see Table 4). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Methodology, Upon completion of the search, duplicate articles were removed and search results were screened by title and abstract for eligibility. Our review shows internet-specific ethical guidelines are available, yet researchers are largely unaware of them. Methods of participant engagement were defined as follows: recruitment—strategies to initiate contact and invite potential participants; retention—strategies to maintain contact with participants in longitudinal research; and tracing—strategies to find and re-establish contact with participants in longitudinal research who have been lost to follow-up. While researchers recognised that age misrepresentation is not confined to online research [59, 62, 71], one study argued that online users are inclined to falsify their age [70]. https://doi.org/10.1371/journal.pone.0204572.g001. Conversely, one study found participants were cautious about engaging with researchers via social media as they were an older generation who lacked experience and confidence with that medium [47]. %PDF-1.5 %���� Articles suggested several strategies to improve participant comprehension online, including video conferencing and phased consent. [11] alternatively proposed that researchers interested in recruiting young people via social media may benefit from directly targeting parents instead of children. Some articles [20, 42, 54, 65, 86] reported consulting ethical guidelines produced by their institutional review board [56], country of origin (e.g., National Statement on Ethical Conduct in Human Research [27], Belmont Report [87]) or the World Medical Association [88]. Funding acquisition, Participants perceived Facebook to be a “more secure and private way of being contacted than by telephone or letter” [44, p. 32] and many were friendly and informal when contacted via Facebook. One article noted that adolescents were generally uninterested in reading study information and informed consent materials [54]; an observation that has been reported by others engaging participants online and offline [130, 131]. [44] reporting a higher response rate for participants traced via Facebook than those traced using the electoral roll and contacted via post. The content of the university guidelines varied widely and included comprehensive guidelines (e.g., [96, 109]), general procedures and policies regarding recruitment, data collection and data storage (e.g., [104]) and resources that reiterate the AoIR guidelines (e.g., [102]). Instead, professional guidelines suggest researchers utilise offline consent procedures [90, 99] while one university guideline recommends limiting online research with minors to minimal risk research that qualifies for a waiver of parental consent [103]. Validation, 173 0 obj <>stream endstream endobj startxref As the Scopus search generated over 70,000 initial hits, results were refined by applying additional search limits (see S1 File).
Engaging families and children in research online introduces unique challenges requiring careful consideration. Ethics Guidelines for Internet-mediated Research 2 2. Alternatively, it could reflect the smaller number of longitudinal studies (which require retention and tracing) relative to cross-sectional studies, or that use of the internet in this way is an emerging method not yet in widespread use. Boolean search operators “AND” and “OR” were used to combine keywords between and within categories. Given its effectiveness, tracing participants via social media is likely to become more popular among researchers, but the lack of ethical guidance for this method is concerning. Writing – review & editing, Affiliations Ethics and research methods are closely interrelated.Oneofthechallengestodevelop-ing a coherent approach to ethical dilemmas in Internet research is that as the Internet evolves as a space for social interaction and information dissemination, the methods necessary to capture and document such activities are also emergent and novel. Most commonly, online tracing was done via social networking sites (e.g., Facebook, Myspace, Friends United) using the platform’s messaging feature to send private messages to potential participant matches, identified by the information publicly displayed on their profile. Produced in Australia, Clark et al. [62] aimed to recruit youth to online focus groups and was interested in offering an incentive.