Participation in Research and the CRPD

Abstract

This article discusses the implications of the United Nations’ Convention on the Rights of Persons with Disabilities (“CRPD”) for domestic policies on research involving persons with disabilities, including those with limited decision-making abilities. It starts with an examination of the protection the Convention affords to persons with disabilities against being enrolled in research projects, and argues that it does offer some such protection, but that the precise extent of this protection depends on conceptual and other matters that are not easily resolved by straightforward treaty interpretation. The article then proceeds with an analysis of whether the CRPD includes a right to participate in research projects on an equal basis with others. It argues that there are good reasons to interpret the CRPD to include such a right and explores its normative content. The article describes how the prohibition on discrimination delineates the scope for lawful exclusion of persons with disabilities in research studies and illustrates how discrimination analysis can be used to distinguish lawful practices from unlawful ones. It stops short, however, of drawing general conclusions about when exclusion is prohibited by the CRPD, arguing that this will depend on unresolved issues about the correct interpretation of the Convention’s right to legal capacity, and on an analysis of the rights and interests at stake in any given situation.