The Importance of Engaging Children in Research Decision‐Making: A Preliminary Mixed‐Methods Study
Erin Talati Paquette, Hannah Palac, Elizabeth Bair, Blake Schultz, Nicole Stenquist, Steven Joffe, Avani Shukla
Ethics & Human Research, 18 May 2020
Abstract
Studies demonstrate deficiencies in parents’ and children’s comprehension of research and lack of child engagement in research decision‐making. We conducted a cross‐sectional and interview‐based study of 31 parent‐child dyads to describe decision‐making preferences, experiences, and comprehension of parents and children participating in research. Parents and children reported that parents played a greater role in decisions about research participation than either parents or children preferred. The likelihood of child participation was associated with the extent of input the parent permitted the child to have in the decision‐making process, the child’s comprehension, whether the study team asked the child about participation, whether the child read study‐related materials, the parent’s marital status, and the child’s race. Children had lower comprehension than adults. Comprehension was related to age, education, verbal intelligence, and reading of study‐related information. Parent understanding was associated with prospect for benefit and illness severity. Child participation may be improved by increasing parent‐child communication, emphasizing important relational roles between parent and child, respecting the developing autonomy of the child, increasing engagement with the study team, providing appropriate reading materials, and assessing comprehension.

‘It’s never okay to say no to teachers’: children’s research consent and dissent in conforming schools contexts
Perpetua Kirby
British Educational Research Journal, 5 May 2020
Abstract
This paper examines the limits to children giving research consent in everyday school contexts that emphasises their conformity to comply with adult expectations, and highlights children’s competence and agency in navigating this conformity through different practices of dissent. It draws on research into children’s agency, using a multimodal ethnography of Year One classrooms in two English primary schools. The paper includes a reflexive methodological focus, exploring the extent to which I counter the schools’ emphasis on conformity. This includes creating visuals for children to practice consent; positioning myself as the researcher in a non-teacher role, as ‘least adult’, and the one who ‘least knows’; and designing interview spaces markedly different from classrooms. The paper examines how children navigate conforming discourses by finding different ways to dissent in the research. Firstly, children demonstrate a sophisticated awareness of the cultural norms of indicating refusals beyond saying the word ‘No’. Secondly, children achieve unnoticeablity, by which they absent themselves from the ‘on-task’ classroom culture, and by extension, the research process. Thirdly, they engage in playful dissent demonstrating their political knowingness of the classroom social order. The paper discusses the implications for educational research when the values of consent are in conflict with a schooling focused on conformity. This includes emphasising the limits of consent procedures, paying closer attention to how researchers recognise and respond ethically to children’s multiple practices of dissent, and using research to disrupt problematic power structures in education settings that limit possibilities for children’s consent.

Case for persuasion in parental informed consent to promote rational vaccine choices
Original Research
Jennifer O’Neill
Journal of Medical Ethics, 4 May 2020
Abstract
There have been calls for mandatory vaccination legislation to be introduced into the UK in order to tackle the national and international rise of vaccine-preventable disease. While some countries have had some success associated with mandatory vaccination programmes, the Royal College of Paediatrics and Child Health (RCPCH) insist this is not a suitable option for the UK, a country which has seen historical opposition to vaccine mandates. There is a lack of comprehensive data to demonstrate a direct link between mandatory vaccination legislation and increased uptake. While there are examples whereby there has been an improvement, some studies suggest that comparable results can be obtained by strongly recommending vaccinations instead. The RCPCH insist that healthcare workers are ideally placed to engage and inform parents to make every interaction a ‘vaccine opportunity’. This paper calls for a principled, rational approach to interpretations of autonomy which underpin parental informed consent. MacLean’s concept of mutual persuasion could be a vehicle to ensuring parents are suitably informed of both the material risks associated with vaccine choices and to consider the rationality of their decisions, while ultimately upholding parental autonomy. It is argued that this, alongside infrastructural improvement, could create a more sustainable, long-term improvement in childhood vaccination rates in the UK than mandatory vaccination.