This project, undertaken in partnership with UNICEF, explored the main ethical challenges, and corresponding mitigation strategies, in relation to involving children with disabilities in evidence generation.
Children with disabilities are defined as individuals under 18 years of age who have long-term physical, mental, intellectual or sensory impairments that, in conjunction with various barriers, may hinder their full and effective participation in society on an equal basis with others. Evidence generation activities are defined as research, evaluation, data collection and analysis.
The project produced a number of resources designed to equip the reader with an understanding of some of the key ethical issues, as articulated in the literature, involved in engaging children with disabilities in evidence generation activities.
Involving children with disabilities in evidence generation raises various issues and dilemmas over and above those usually considered for children in general. There is a tendency for children with disabilities to be deliberately or accidentally excluded from evidence generation. Processes of information giving, consent or assent, and methodologies for data collection may be insufficiently adapted to be deemed truly disability inclusive. Additionally, many negative assumptions are made about the capacity of children with disabilities to participate in generating data, and the possibility and value of including them throughout the evidence generation process is not well understood.
The resources produced through this project provide an overview of the key issues drawn from the literature reviewed and suggest established and potential mitigation strategies that could improve ethical practices when involving children with disabilities in evidence generation activities. More evidence generation activities with this group of children are urgently needed, and it is important that conventional and existing ethical practices used with children are further developed to embrace disability inclusion. This will encourage the realization of children’s right to participate and be heard, and ensure that policy and practice are informed by the perspectives and concerns of children with disabilities. Importantly, this approach can support a wider agenda for the greater inclusion in society of children with disabilities.
The overall objective of this project was to encourage the inclusion of children with disabilities in future evidence generation activities while also taking into account relevant ethical considerations and mitigation strategies to ensure that these children are respected and protected throughout the process.