Anonymity, Confidentiality and Informed Consent: Exploring Ethical Quandaries and Dilemmas in Research with and About Disabled Children’s Childhoods
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?
- Alderson, P. (2014). Ethics. In A. Clark, R. Flewitt, M. Hammersley, & M. Robb (Eds.), Understanding Research with Children and Young People. London: Sage.Google Scholar
- BERA. (2011). Ethical Guidelines for Educational Research. London: British Educational Research Association.Google Scholar
- Ellis, C., & Bochner, A. P. (2000). Autoethnography, Personal Narrative, Reflexivity: Researcher as Subject. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research (2nd ed., pp. 733–768). Thousand Oaks: Sage.Google Scholar
- Hollway, W., & Jefferson, T. (2000). Biography, Anxiety and the Experience of Locality. In P. Chamberlayne, J. Bornat, & T. Wengraf (Eds.), The Turn to Biographical Methods in Social Science (pp. 167–180). London: Routledge.Google Scholar
- Murray, B. L. (2010). Secrets of Mothering. PhD unpublished, University of Saskatchewan, Saskatoon.Google Scholar
- Nuremberg Code. (1947). Directives for Human Experimentation. http://ori.hhs.gov/ori-introduction-responsible-conduct-research. Accessed 31 Aug 2015.
- Riessman, C. K. (2008). Narrative Methods for the Human Sciences. London: Sage.Google Scholar
- Rogers, C. (2003). The Mother/Researcher in Blurred Boundaries of a Reflexive Research Process. Auto/Biography, 11(1&2), 47–54.Google Scholar
- Stanley, L. (1992). The Auto/Biographical I. Manchester: Manchester University Press.Google Scholar
- Thackray, L. (2013). The Meanings of the ‘Struggle/Fight Metaphor’ in the Special Needs Domain: The Experiences of Practitioners and Parents of Children with High Functioning Autism Spectrum Conditions, PhD unpublished, University of Sussex. Retrieved from http://sro.sussex.ac.uk/47168/
- UNCRC. (1989). The United Nations Convention on the Rights of the Child. http://www.unicef.org.uk/UNICEFs-Work/UN-Convention/. Accessed 31 Aug 2015.