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.

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Publication Details

Journal
Ethics & Human Research
Published
2026-07-01
DOI
https://doi.org/10.1002/eahr.70013
Primary Topic
Disability Rights and Representation
Type
article
Field-Weighted Citation Impact
0.00
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article

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

Linus Broström, Anna Nilsson
Ethics & Human Research
Disability Rights and Representation
article

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

Linus Broström, Anna Nilsson
article en

Abstract

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.

Ethics & Human ResearchVol. 48(4)
E Ink (South Korea) (KR), Lund University (SE)
Peace, Justice and strong institutions, Reduced inequalities
Openalex Percentile: Top 5%
Disability Rights and Representation
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