Including Research Subjects without Decision‐Making Capacity Only as Last Resort

ABSTRACT

The aim of this paper is to discuss the ethical and legal justification of the broadly accepted ethical principle that researchers may not include adults without decision‐making capacity to consent to participating in research studies if there are potential research participants with capacity who could be included instead. From the perspective of disability rights, the paper argues that this ethical principle is overprotective in its current form as it gives insufficient consideration to providing persons with disabilities the opportunity to participate in research on an equal basis with others. Nonetheless, the paper also argues that rather than rejecting this ethical principle entirely, it should be qualified to strike a better balance between protecting people without decisional capacity to consent to research and including them.