„Niekas apie mus be mūsų“: žmonių su negalia dalyvavimo tyrimuose etika
„Nothing About Us is Without Us“: The Ethics of Research Participation of People with Disabilities

Summary/Abstract: In recent decades the attitudes toward people with disabilities in society and in scientific discourse have been changing positively. The importance of their participation in research has been recognized. People with disabilities themselves have expressed their position on participation in research through a well-known slogan ‘nothing about us is without us,’ which has become a symbolic and very strong imperative for ethics also. Participation in medical research is regulated by the Declaration of Helsinki and other documents. The basic provisions of this document might be applied in social research, but there arise many research implementation issues, which are important to conceptualize as good ethical practice. This article uses systematic literature analysis to seek conceptual answers to the most relevant ethical questions and issues. These include the integrity of the objectives in research with participation of people with disability and the assumptions of informed consent.

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