Ensuring beneficence in 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.

Alderson, P., & Morrow, V. (2011). The ethics of research with children and young people: A practical handbook. SAGE Publications Ltd

In this comprehensive book, written for both students and researchers, Alderson and Morrow consider key ethical issues and dilemmas that arise when researchers work with children and young people. Focusing on considerations that impact ten distinct phases of the research process, the authors also provide information about relevant laws and guidelines. The authors consider the principle of beneficence and how researchers should address this throughout the research process.

American Academy of Pediatrics Committee on Native American Child Health; American Academy of Pediatrics Committee on Community Health Services. Ethical considerations in research with socially identifiable populations. Pediatrics. 2004 Jan;113(1 Pt 1):148-51. 

In this article, the American Academy of Pediatrics considers how researchers who work with socially identifiable populations need to have particular regard to the principle of beneficence, and how this should be balanced with the extent of potential harms, or risks of harm, that can arise in the research context. They argue that when researchers work with socially identifiable communities, such as Indigenous communities, the guidelines for beneficence should potentially be more stringent, i.e. researchers should more clearly articulate the tangible benefits of research for the relevant communities. They propose that involving the relevant communities in the research process is one measure that can support beneficence in research.

Chabot C, Shoveller JA, Spencer G, Johnson JL. Ethical and Epistemological Insights: A Case Study of Participatory Action Research with Young People. Journal of Empirical Research on Human Research Ethics. 2012;7(2):20-33.

In this article the authors reflect on their experiences in facilitating the participation of children and young people in an action research project. They argue that researchers have an obligation to facilitate the participation of children and young people in research in spite of debates about the age at which children can freely and independently consent to this. They maintain that researchers have an obligation to inform children and young people about their rights in the context of research participation, and to explain these to them, in order to support their decision-making in this regard.

Farrell A. Towards beneficence for young children in research: challenges for bioethics committees. Med Law. 2010 Sep;29(3):389-402. PMID: 22145559

In this article, Farrell considers how bioethical research committees are tasked with the responsibility of balancing considerations of research beneficence and risks, specifically referring to children and young people. She argues that countries like Australia have tended to favour child protection and risk minimization over children’s bona fide participation in research. This approach is grounded in an understanding that children do not have the necessary skills and competence to understand and freely consent to participating in research. Drawing on evolving debates, Farrell provides insights about children’s competence to consent to and withdraw from research participation in order to support members of bioethical committees in realizing the benefits that research participation may have for children and young people.

Lundy, L., & McEvoy, L. (2012). Children’s rights and research processes: Assisting children to (in)formed views. Childhood, 19(1), 129–144.   

In this article Lundy and McEvoy consider a body of work where children have been engaged as co-researchers and research participants and how this has implications for children’s rights. They maintain that researchers should ensure safe, engaging and inclusive opportunities for children and young people to express their own views in the context of research. They also argue that researchers have a responsibility to engage in deliberate strategies to assist children in forming their own views when participating in research. This can include building capacities and understandings about substantive research issues in collaboration with children and young people to support them in contributing more confidently to research processes.

Munir K, Earls F. Ethical principles governing research in child and adolescent psychiatry. J Am Acad Child Adolesc Psychiatry. 1992 May;31(3):408-14. PMID: 1592771 .

In this article the authors consider how psychiatric researchers can balance the principles of beneficence and nonmaleficence together with the principles of autonomy and justice in research with children and young people. They consider how this also relates to responsible research practice, scientific integrity as well as research advocacy, training and stewardship. 

Taplin S, Chalmers J, Hoban B, McArthur M, Moore T, Graham A. Children in Social Research: Do Higher Payments Encourage Participation in Riskier Studies? Journal of Empirical Research on Human Research Ethics. 2019;14(2):126-140.  

In this article the authors report on a study of whether payment amounts influenced how Australian children and young people participated in social research on issues of varying sensitivity. All respondents were more likely to participate in studies of topics of lower sensitivity regardless of the level of payment. The offer of payment (at any level) also increased the likelihood that children and young people would participate in research. In general, the higher the level of payment, the higher the likelihood that the respondents would participate. The authors find that payments can be used in research with children and young people without concerns of undue influence. The authors argue that balancing overall levels of risks and beneficence accruing to children and young people are more important considerations for researchers than the level of payment that should be offered.

Vanaken GJ, Noens I, Roeyers H, van Esch L, Warreyn P, Steyaert J, Hens K. Ethics of returning children's individual research findings: from principles to practice. Eur Child Adolesc Psychiatry. 2021 Aug;30(8):1163-1171.

In this article the authors consider when and how researchers can return information to children and/or their parents about their participation in research. They draw examples from a longitudinal infant development study focusing on the topic of autism. The authors argue that the practice of providing such information to parents is not without risk. They argue that researchers have ancillary care responsibilities to children and young people as research participants and that these need to be considered with regard to the principles of beneficence, non-maleficence and the children’s right to an open future. The authors suggest that the systematic returning of individual research findings related to children should be restricted to cases where these findings are considered clinically significant and actionable. They also discuss the broader implications for conducting research in the behavioural sciences with children and young people.

Westra AE, Willems DL, Smit BJ. Communicating with Muslim parents: "the four principles" are not as culturally neutral as suggested. Eur J Pediatr. 2009 Nov;168(11):1383-7

In this article, the authors consider how the principles of autonomy, non-maleficence, beneficence and justice need to be considered in different cultural contexts. In particular they challenge the appropriateness of communicating these principles to patients of different religious and cultural backgrounds. They argue that differences in the interpretation and applicability of these principles require careful consideration from researchers who work in different cultural contexts.

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