Non-discriminatory research ethics. Law reform and implementation challenges in the light of the UN Convention on the Rights of Persons with Disabilities.
The main purpose of ethics regulation of human subjects research has always been to provide protection. Certain groups, such as persons with impaired capacity to provide free and informed consent, have been viewed as vulnerable to exploitation and harm, and therefore in need of particular safeguards. Recently, these safeguards have been criticised for being over-protective, hindering important research from being conducted and violating human rights law, such as the UN Convention on the Rights of Persons with Disabilities (CRPD) – a convention which grants persons with disabilities wide-ranging rights to autonomy and participation in society. The project aims to explore how current regulations could be revised to comply with the CRPD and still provide vulnerable research participants with appropriate protection. To assist researchers, universities and others who will apply such revised rules, key implementation challenges will be identified and analysed. These concern, among other things, how "supported decision-making", a new paradigm called for by the CRPD, can be operationalised in the research context. The project is relevant to all research where informed consent is the default requirement. Its findings will be applicable to many codes of research ethics, although its focus will be on Swedish law. The project is located at the intersection of ethics and human rights law, and will combine standard methods of analysis in applied ethics with legal doctrinal method.