Anonymity, confidentiality and informed consent: Exploring ethical quandaries and dilemmas in research with and about disabled children’s childhoods.
Thackray, L. (2018). Anonymity, confidentiality and informed consent: Exploring ethical quandaries and dilemmas in research with and about disabled children’s childhoods. In T. Curran & K. Liddiard (Eds.), The Palgrave Handbook of Disabled Children’s Childhood Studies (pp. 299-313). London: Palgrave Macmillan.
The underlying premise on which this chapter is based is the right of all children to have their voices heard, regardless of any impairment. From this perspective, the ethics of research with disabled children apply to all children, but research with some more vulnerable children may need additional thought on the part of the researcher. The chapter does not pretend to offer conclusive answers, but rather encourages researchers and others to consider the current and ongoing implications of research undertaken with children and young people.
What does informed consent mean in research with disabled children? Does this differ from assent? How can we avoid excluding children from research on the grounds of lack of competency?
What do parent or other significant adult researchers need to consider when reporting their own and their disabled children’s experiences?
How might a young person or an adult view what was written about them in a research account about their childhood experiences written when they were a child?
Abstract reproduced with permission © Springer Science+Business Media B.V. 2018.Publisher’s Link