Working with sensitive personal data in research with children and young people

Citation: Ní Bhroin, N. & Staksrud, E. (2022). Working with sensitive personal data in research with children and young people: An annotated bibliography and guided reading list. CO:RE – Children Online: Research and Evidence.

Duncan, R.E:, Drew, S.E., Hodgson, J. & Sawyer, S.M. (2009). Is my mum going to hear this? Methodological and ethical challenges in qualitative health research with young people, Social Science & Medicine, 69(11), 1691-1699.

In this article the authors consider an ethical dilemma that arose in their research exploring self-management of chronic illness in adolescents. Specifically, one participant disclosed that they were not adhering to their medication, a situation which had significant health implications for them. As the authors had ensured the participant of confidentiality they were faced with a need to consider important ethical principles, options for action and the implications of these. The authors argue that the nature of qualitative research with young people involves substantial ethical risk that need to be considered throughout the research process.

Lumby, C., Albury, K., McKee, A. & Hugman, S. (2018). Ethical issues in qualitative research addressing sensitive issues with children and young people. In L. Grealy, C. Driscoll & A. Hickey-Moody (Eds.) Youth, Technology, Governance, Experience: Adults Understanding Young People. Routledge. ISBN 9781351112673

In this book chapter the authors outline best practice ethics and methods for research involving sensitive issues such as sexuality. The authors emphasis consideration of differences between adults and young people, power relations, confidentiality and the minimization of harm. The authors argue that qualitative research methods facilitate reflexive research design and implementation and allow for the creation of safe spaces for young people to actively engage in research.

Martins, P. C., Oliveira, V. H., & Tendais, I. (2018). Research with children and young people on sensitive topics – The case of poverty and delinquency. Childhood, 25(4), 458–472. 

In this article the authors consider how research about child poverty and juvenile delinquency involve both children and sensitive topics. They consider the critical problem of the quality of children’s participation in research focusing on ethical and methodological challenges. The article is based on reflections from a self-report survey based on juvenile delinquency and a multi-method study of low-income families.

Moore, T., McArthur, M., Graham, A., Chalmers, J., Powell, M. A., & Taplin, S. (2020). Children and young people’s decision-making in social research about sensitive issues. Children’s Geographies, 19(6), pp. 689-704.

In this article the authors reflect on a study which investigated what constitutes a sensitive issue in social research and the factors that participants, including children and young people, considered when deciding whether or not to participate. The authors find that a range of both intrinsic and extrinsic motivations influence whether or not children and young people engage with research. They also find that the amount and nature of information provided about the research also plays a critical role in supporting children’s considered decision-making. Another important factor is the extent to which participation might provide rich insights into why research might matter for them or for others.

Moore, T., McArthur, M., Roche, S., Death, J., & Tilbury, C. (2016). Safe and Sound: Exploring the Safety of Young People in Residential Care: a Report for the Royal Commission Into Institutional Responses to Child Sexual Abuse. Canberra: Institute of Child Protection Studies.

In this report the authors describe an ethical challenge that arose regarding the involvement of children and young people in research that could provide them with an opportunity to contribute to discussion about child sexual abuse, while also protecting them against material that was sensitive and might cause them discomfort or stress.

Perez Vallejos, E., Koene, A., Carter, C. J., Hunt, D., Woodard, C., Urquhart, L., Bergin, A., & Statache, R. (2019). Accessing online data for youth mental health research: Meeting the ethical challenges. Philosophy & Technology, 32(1), pp. 87-110.

In this article the authors discuss ethical issues arising when accessing online and sensitive personal data, regarding web-counselling services, for research purposes. They highlight the relevance of a process-based approach to research ethics and discuss the potential challenges arising from accessing public data from Digital Mental Health services. Special consideration is given to user expectations surrounding the use of their data, as well as their understandings of the public or private nature of the information they post. The authors emphasize the distinction between public, private and open data which they argue is crucial to research about digital mental health services.

Powell, M. A., McArthur, M., Chalmers, J., Graham, A., Moore, T., Spriggs, M., & Taplin, S. (2018). Sensitive topics in social research involving children. International Journal of Social Research Methodology, 21(6), pp. 647-660.

In this article the authors discuss how difficult it is for researchers to involve children and young people in research about sensitive issues, in particular as there is a lack of clarity about what constitutes a sensitive topic. The authors explore this question with a broad range of Australian research stakeholders in a series of interviews. They find that stakeholder understandings of sensitive topics are closely linked to the contexts of children’s lives and experiences. They argue that this requires researchers to develop a more nuanced understanding of sensitive issues and to engage in the development of research relationships that promote the ethical conduct of research with children. 

All of the resources referenced in our reading lists are also included in our Zotero library.