Ethical considerations in online research with children and young people

Citation: Ní Bhroin, N. & Staksrud, E. (2022). What to consider when engaging children and young people as co-researchers? An annotated bibliography and guided reading list. CO:RE – Children Online: Research and Evidence.

Brothers, K., Clayton, E., & Goldenberg, A. (2020). Online Pediatric Research: Addressing Consent, Assent and Parental Permission. Journal of Law, Medicine & Ethics, 48(S1), 129-137.

In this article the authors outline practical guidance for researchers who want to recruit children, young people and parents as research participants through online and mobile platforms. They focus on both recruitment, data collection, and supporting decisions to participate.

Burkell, J. & Regan, P. (2021). Expression in the virtual public: Social justice considerations in harvesting youth online discussions for research purposes. Studies in Social Justice 15, (3)

In this article, the authors consider how harvesting data from online social media contexts raises significant social justice considerations for researchers particularly when this data belongs to children and young people. This harvesting often takes place without the explicit informed consent of the children and young people who have generated the data or to whom the data refers. The authors focus on the question of representation, and argue that while research derived from social media might increase the representation of occasionally marginalized voices in the public sphere, it also raises risks for young people including the potential loss of online social community as well as risks to participant rights and wellbeing. They also focus on the question of beneficence, arguing that this kind of research raises questions about participant autonomy and privacy. The authors propose guidelines to support researchers in balancing the principles of representation and beneficence in online research with young people.

Facca D, Smith MJ, Shelley J, Lizotte D, Donelle L (2020) Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review. PLoS ONE 15(8): e0237875.

This article is based on a scoping review of the ethical dimensions, considerations and challenges involved in online research with children and young people. Central themes in the reviewed literature included consent, data management, data rights, observing potential risks of harm to participants or others, understandings of the privacy or publicity of data, and gatekeeping. The authors identify uncertainty about how to deal with these ethical issues which may occasionally result in minors being excluded from otherwise important lines of research inquiry. The authors consider the ethical merits of co-producing ethical practice between minors an researchers in order to address these uncertainties.

Harris J, Porcellato L. Opt-Out Parental Consent in Online Surveys: Ethical Considerations. J Empir Res Hum Res Ethics. 2018 Jul;13(3):223-229. Epub 2018 Apr 9. PMID: 29629822.

In this article the authors discuss the topic of how to seek parental consent to the participation of young people, who have been recruited online, in research. They draw on the example of a health-related study where young people aged 13 to 18 were recruited from YouTube fan communities. Parental consent was required for all participants who were aged below 16, but the researchers had no links to the respective parents or guardians. The researchers propose a practical strategy to deal with this kind of challenge involving combining communication methods for participant information, opt-out online consent and age verification. They consider the strengths and limitations of these approaches.

Heilferty, C.M. (2011) Ethical considerations in the study of online illness narratives: a qualitative review. Journal of Advanced Nursing, 67: 945-953. 

This  article reports on a review of research which sought to describe differences in ethical approaches to research on Internet communication during illness and to report conclusions drawn relevant to a proposed narrative analysis of parent blogs of childhood illness. The review was designed to be a comprehensive assessment of the concepts analysed and the qualitative research measures taken concerning ethics in Internet research across formats. The researchers found three main approaches to ethical conduct in Internet research on illness: these were the human subjects, representation and open source approaches. The authors argue that the best hope for ethical treatment of author–participants is the creation of a comprehensive plan for addressing any and all potential ethical conflicts that may arise in the collection, analysis and reporting of data, taking into consideration rapid changes in technology.

Hokke S, Hackworth NJ, Quin N, Bennetts SK, Win HY, Nicholson JM, et al. (2018) Ethical issues in using the internet to engage participants in family and child research: A scoping review. PLoS ONE 13(9): e0204572.

This article is based on a further scoping review which aimed to integrate ethical issues reported when recruiting, retaining and tracing families and children in research online. Most of the articles reviewed reported on using the internet as a tool for recruitment, with significantly fewer addressing the topics of online retention or tracing. The majority of articles did not discuss ethics beyond general consent or approval procedures. Some of the ethical concerns mentioned were specific to engaging minors, including parental consent, age verification and children’s vulnerability. Other concerns applied to any research participant, including privacy and confidentiality, informed consent and disparities in internet access. Few of the articles reported using guidelines for internet research ethics. 

McInroy, L.B. Innovative Ethics: Using Animated Videos When Soliciting Informed Consent of Young People for Online Surveys. Social Work Research, Volume 41, Issue 2, June 2017, Pages 121–128, 

In this article, the author refers to the use of animated videos to inform participants of their rights and responsibilities in the context of research participation. The author explains the concept of informed consent and discusses how difficult it is to achieve this in the context of online research. She argues that using animated films can help improve how potential research participants are informed about research.

Moran, C & Robards, B (2020) Researching Connected African Youth in Australia through Social Media Ethnography and Scroll-Back Interviews. African Journalism Studies, 41:4, 83-102

In this article the authors reflect on the use of two overlapping research methods, namely social media ethnography and ‘scroll-back interviews’ to study how young African migrants in Australia use social media. The authors consider the ethical challenges that arose when using these methods, including consequences for participant and researcher privacy, the opportunities and consequences of digital traces and the unanticipated impacts for the digital researcher who is perpetually immersed “in the field”. The authors propose that this type of research requires ongoing ethical reflection due to the ambiguous and often “messy” situations that may arise when undertaking digital ethnographic work.

Parsons, S. (2015). The Potential of Digital Technologies for Transforming Informed Consent Practices with Children and Young People in Social Research. Social Inclusion, 3(6), 56-68.

In this article the author discusses how digital technologies might positively support the autonomy, engagement and decision-making of children and young people through the lens of informed consent practices within social research. Current research practices are dominated by paper-based methods for obtaining informed consent which could be exclusionary for children and young people generally, and children with additional learning and support needs in particular. The author argues that digital technologies offer the potential to support the accessibility and understanding of ideas and activities, as well as engagement with and autonomy in decision-making and participation. The author explores the potential and challenges that researchers may face in this context.

Robards, B. (2013). Friending participants: Managing the researcher-participant relationship on social network sites. Young 21(3), 217-235.

In this article the author argues that online research involving young people highlights ethical dimensions that do now always translate easily from traditional research contexts. He argues that many young people manage their online presences in particular ways, including conventions that determine access to online contexts, particularly where these contexts are considered ‘partially private’. This presents a dilemma for a researcher who seeks access to these spaces. The author argues that researching in these contexts requires ongoing reflection on the part of researchers about the public/private nature of the information that is being shared and how this in turn should be managed in the research context. 

Woodrow, N., Fairbrother, H., Crowder, M., Goyder, E., Griffin, N., Holding, E.and Quirk, H. (2022), "Exploring inequalities in health with young people through online focus groups: navigating the methodological and ethical challenges", Qualitative Research Journal, Vol. 22 No. 2, pp. 197-208.

In this article the authors reflect on their experiences of engaging in online focus group research with young people about sensitive topics. In particular, they note how the online research context influenced their ability to develop rapport and relationships with the research participants to support them in discussing sensitive topics. The authors propose that researchers who engage in this kind of research should design activities to develop rapport with participants during recruitment and data collection and that they should also establish clear support and safeguarding protocols to help navigate the challenges of online research and support participant engagement.

Research ethical guidelines:

Franzke, Aline Shakti, Bechmann, Anja, Zimmer, Michael, Ess, Charles and the Association of Internet Researchers (2020). Internet Research: Ethical Guidelines 3.0.

The Association of Internet Researchers has collaboratively developed a series of guidelines for researchers, students, Institutional Review Board Members and technical developers who deal with Internet Research Ethics. The guidelines are underpinned by a commitment to ethical pluralism and cross-cultural awareness as well as an experientially grounded view of research ethics. The guidelines underline how each context and stage of research is different thus provoking distinct questions and requirements for ethical consideration.

NESH. (2022). Guidelines for Research Ethics in the Social Sciences and the Humanities. Oslo: The Norwegian National Research Ethics Committees.

The Norwegian National Research Ethics Commitees published an updated series of research ethical guidelines for researchers in the social sciences and the humanities in 2022. These guidelines aim to support researchers in understanding the fundamental norms of research ethics. The guidelines in particular highlight the distinction between ethics and legislation with particular regard to the investigation of scientific misconduct and dealing with personal data.

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