Systemic Change in Research Ethics for The UNCRPD Knowledge Base: Mapping A Way Forward

Abstract

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) aims to transform the lives of people with disabilities around the globe. Many challenges to achieving that goal still remain. The area of disability research ethics is one of those challenges and is the subject of this chapter. Systemic reform of disability research ethics is needed in order to ensure that the work of the UNCRPD rests on a bedrock of quality research and data collection. In that way, progress can be supported and any regression of disabled people’s human rights and equality can be recognised and reversed (Good, 2020). While much work has already been done, inconsistencies remain with regard to the fundamental challenge of removing all ableism from the UNCRPD knowledge base. The COVID-19 pandemic of 2020–2023 starkly revealed the level of remaining ableism across the world, and how this ableism meant that Covid negatively impacted the lives of disabled people more extremely than others. This was revealed, for example, in a recent study of Covid era policies in 14 countries (Shikako et al., 2023) and also in a study of disabled people’s experiences of the Covid pandemic in South Africa (Wickenden et al., 2023). Reformed ethics in research and data collection are needed to expose and understand the problems in policy and practice, during the pandemic, which in some cases reverted to eugenics, and to investigate how to address these. This chapter maps out some possible ways forward in the work to improve human rights and equality-based research as an ethical issue.

Citation

Good, A. and Allen, G. (2024), "Systemic Change in Research Ethics for The UNCRPD Knowledge Base: Mapping A Way Forward", Good, A., Elliott, I. and Mallon, S. (Ed.) Advances in Disability Research Ethics (Advances in Research Ethics and Integrity, Vol. 11), Emerald Publishing Limited, Leeds, pp. 13-32. https://doi.org/10.1108/S2398-601820240000011002