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.
Highlights
Human subjects research,[1] in various fields, is clearly important to societal progress
The article proceeds with an analysis of whether the CRPD includes a right to participate in research projects on an equal basis with others
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
Summary
Human subjects research,[1] in various fields, is clearly important to societal progress. Swedish legislation on research ethics[15] applies to medical or biomedical research It covers all research involving physical interventions, attempts to influence participants (physically or mentally), obvious risks of participants coming to harm (physically or mentally), or the processing of "special categories of" personal data (as defined by the EU General Data Protection Regulation).[16] And while not legally binding, many influential ethics codes recognize the risk of harm and exploitation in those other fields as well, and include specific guidelines aimed to safeguard against various kinds of wrongdoing towards participants.[17]. In 2008, the CRPD came into force.[18] This treaty aims to ensure the full and equal enjoyment of human rights by persons with disabilities,[19] and it incorporates provisions on the need to protect persons with disabilities from exploitation and harm, other interests are arguably at the forefront of it These include respect for individual autonomy and participation and inclusion in the community
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