Citation: Ní Bhroin, N. & Staksrud, E. (2022). What is ethical informed consent? An annotated bibliography and guided reading list. CO:RE – Children Online: Research and Evidence.
Arnott, L., Martinez-Lejarreta, L., Wall, K., Blaisdell, C., & Palaiologou, I. (2020). Reflecting on three creative approaches to informed consent with children under six. British Educational Research Journal, 46(4), 786-810.
In this article the authors seek to provide practical examples to guide researchers who seek informed consent from children under six years old. Drawing on researcher field notes, images and observations from four research projects the authors consider how successful three different techniques were in facilitating children’s decision-making around research participation. The authors find that the creative methods used opened spaces where children could engage in dialogue and questioning abut the projects. At the same time they noted the need for such approaches to consider the maturity and capabilities of the children.
Berman, Gabrielle (2020). Ethical Considerations for Evidence Generation Involving Children on the COVID-19 Pandemic. Innocenti Discussion Papers, no. 2020-01, UNICEF Office of Research - Innocenti, Florence
This discussion paper explores the generation of evidence about children and young people during the pandemic, and the ethical issues arising.
Bourke, R. & Loveridge, J. (2014). Exploring informed consent and dissent through children’s participation in educational research. International Journal of Research & Method in Education, 37(2), 151-165.
In this article, the authors explore how children’s informed consent can be sought and negotiated in educational research. They also focus on how children’s informed dissent should be considered during the research process.
Dockett, S., & Perry, B. (2011). Researching with Young Children: Seeking Assent. Child Indicators Research, 4(2), 231–247.
Here the authors consider a shift from researching on children to researching with children, maintaining that the latter approach recognises children’s agency and their rights to have a say in matters that affect them. At the same time, they find that prevailing views about children’s competence to participate in research influence the extent to which they are involved, and often preclude their involvement. They argue for recognising the importance of assent as a means to recognise the wishes of young children in relation to research participation.
Ferrer-Albero, C., & Díez-Domingo, J. (2021). Does a comic style informed assent form improve comprehension for minors participating in clinical trials? Clinical Ethics, 16(1), 37-45.
Based on findings that demonstrated that children did not fully understand the research studies in which they are participating, the authors argue for the inclusion of graphic elements to increase understandings of assent forms in the context of clinical trials. The authors designed an assent form in comic strip format and compared children and young people’s understanding of this format to a traditional assent form. They found that the comic strip assent form include the readability and comprehension of the information provided about the research project. They argue that this format could help the comprehension of minors participating in a clinical trial and support their autonomy in decision-making.
Grootens-Wiegers, P., de Vries, M. C., van Beusekom, M. M., van Dijck, L., & van den Broek, J. M. (2015). Comic strips help children understand medical research: targeting the informed consent procedure to children’s needs. Patient education and counseling, 98(4), 518-524.
In this article, the authors report on a participatory project where children and young people were involved in the design of new information material to explain the essential concepts of medical research. A comic strip was produced by a science communicator in collaboration with paediatricians. This was in turn presented to children who were also consulted for further development in surveys and interviews. The material was also evaluated in four school classes with children of varying ages and educational levels. The authors conclude that the resulting material was well understood and accepted.
Kustatscher, M. (2014). Informed consent in school-based ethnography: Using visual magnets to explore participation, power and research relationships. International Journal of Child, Youth & Family Studies, 5(4.1), 686-701.
In this article the authors draw on ethnographic fieldwork conducted with young children (aged 5 to 7) where photo-magnets were used to support the children in indicating their ongoing willingness (or dissent) to participate in various research-based activities. The authors submit that the children’s engagement with the magnets produced insights into their understandings of participation in research, various power dynamics, and the entanglement of informed consent procedures and research relationships. The authors stress the importance of creating a space to discuss these issues as part of doing research.
Lundy, L., & McEvoy, L. (2012). Children’s rights and research processes: Assisting children to (in)formed views. Childhood, 19(1). 129-144.
Reflecting on a body of work with children as co-researchers and research participants, the authors argue for the importance of creating safe, inclusive and engaging opportunities for children to express their views in research, as well as the construction of deliberate strategies to assist children in forming their views. The authors submit a conceptualisation of this approach which integrated relevant international children’s rights standards.
Milda Macenaite & Eleni Kosta (2017) Consent for processing children’s personal data in the EU: following in US footsteps?, Information & Communications Technology Law, 26:2, 146-197, DOI:
The authors discuss the differences between the provisions of the European General Data Protection Regulation (GDPR) and the US Children’s Online Privacy Protection Act (COPPA) to assess the provisions of both instruments relating to the consent of minors to the processing of their own personal data online. They aim to identify pitfalls and lessons learned from the implementation of COPPA in advance of the application of the GDPR.
Massetti, T., Crocetta, T. B., Guarnieri, R., Silva, T. D. D., Leal, A. F., Voos, M. C., & Monteiro, C. B. D. M. (2018). A didactic approach to presenting verbal and visual information to children participating in research protocols: The comic book informed assent. Clinics, 73.
In this article, the authors discuss the development and use of a comic book to facilitate children in understanding the concept of informed assent in clear and simple language.
Mayne, F., & Howitt, C. (2022). The Narrative Approach to informed consent: Empowering young children’s rights and meaningful participation. Routledge. ISBN 9780367352219
In this book the authors provide a practical guide for researchers who want to engage children in rights-based, participatory research. A key component of the book is the presentation of the authors’ ‘Narrative Approach’ which aims to help children understand what it means to participate in research. Using an ‘Informing Story’ which combines elements of interaction, information and narrative, the authors aim through this approach to improve children’s understanding of key research concepts through storytelling. The authors document the implementation of this approach in four different case studies.
Moilanen, K. L. (2016). Why Do Parents Grant or Deny Consent for Adolescent Participation in Sexuality Research? Journal of Youth and Adolescence, 45(5), 1020–1036.
In this article the authors engage in survey-based research to explore parents’ reasons for providing or denying consent to their children’s participation in research about sexuality. Parents who were likely to consent were largely motivated by the potential benefits and limited risks of participation. Parents who were likely to dissent expressed discomfort with the topic of sexual content and fount this to be inappropriate for young and naïve adolescents. Most of the respondents were more likely to consent where the researchers confirmed that they would engage in ethical practices such as protecting confidentiality. The authors focus their discussion on the objective of increasing the potential for recruitment of adolescents to studies about sexuality.
Moore, T. P., McArthur, M., & Noble-Carr, D. (2017). More a marathon than a hurdle: Towards children’s informed consent in a study on safety. Qualitative Research, 18(1), 88-107.
In this article the authors reflect on how researchers can practically see consent as an ongoing process. They reflect on their own experiences of research about children’s safety from abuse in institutional contexts. They submit that it is important for researchers to present information to children and young people in an accessible and appropriate way, and to provide opportunities to negotiate participation and for in-the-moment challenges to be dealt with collaboratively and reflexively.
Nutbrown, C. (2011). Naked by the Pool? Blurring the Image? Ethical Issues in the Portrayal of Young Children in Arts-Based Educational Research. Qualitative Inquiry, 17(1), 3–14.
In this article the author expresses a concern about the use of photographs of young children in social research, and a particular concern with the increasing pixellation of such images to distort their representation in the interest of protecting privacy. The author argues that the practice of pixellation is an example of the othering of young children in research, which may also represent a crisis of representation for children and young people.
Parsons, S., Sherwood, G., & Abbott, C. (2016). Informed Consent with Children and Young People in Social Research: Is There Scope for Innovation? Children & Society, 30(2), 132 145.
In this article the authors express frustration with what they see as the increasing bureaucratisation of research ethics governance in the UK. They question whether new technologies can be used to support children and young people in providing informed consent to participate in research. They concede that there is a need for the co-creation of research information together with children and young people, and for a greater transparency amongst researchers by sharing creative solutions to address this issue.
Rogers, R., & Labadie, M. (2018). Rereading assent in critical literacy research with young children. Journal of Early Childhood Literacy, 18(3), 396-427.
In this article the authors raise a concern that researchers do not often report on the extent to which they gain and keep assent in literacy research with children. The authors report on their efforts to design research lessons and collect artefacts of learning, including interviews to support children’s developing understanding and critical analysis of concepts such as voluntary participation, as well as understandings of procedures, confidentiality, benefits and risks of research and the right to ask questions.
Ruiz-Casares, M., & Thompson, J. (2016). Obtaining meaningful informed consent: Preliminary results of a study to develop visual informed consent forms with children. Children’s Geographies, 14(1), 35-45.
In this article the authors report on a pilot study where participatory visual methods were used to improve children’s (aged 8-12) understanding of informed consent. Two workshops were held to discuss the content of informed consent forms with the children, with a particular focus on the concepts of confidentiality and voluntary participation. The children took photographs to represent these concepts. The authors find that simplified forms generate boredom, disengagement and/or anxiety for young people and argue instead for the potential to enhance the informed consent process by using participatory visual methods with children.
All of the resources referenced in our reading lists are also included in our Zotero library.
