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

Broström, Linus LU and Nilsson, Anna LU orcid (2026) In Ethics & Human Research 48(4). p.20-33
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... (More)

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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Please use this url to cite or link to this publication:
author
and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Humans, Decision Making, Mental Competency, Informed Consent/ethics, Research Subjects/legislation & jurisprudence, Persons with Disabilities, Disability Discrimination
in
Ethics & Human Research
volume
48
issue
4
pages
14 pages
publisher
John Wiley & Sons Inc.
external identifiers
  • pmid:42391335
  • scopus:105043808923
ISSN
2578-2355
DOI
10.1002/eahr.70013
language
English
LU publication?
yes
additional info
© 2026 The Author(s). Ethics & Human Research published by Wiley Periodicals LLC on behalf of The Hastings Center.
id
fd54c4d1-d5e0-41a3-bba5-de0b7c4774ce
date added to LUP
2026-08-26 10:57:04
date last changed
2026-08-27 04:00:53
@article{fd54c4d1-d5e0-41a3-bba5-de0b7c4774ce,
  abstract     = {{<p>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.</p>}},
  author       = {{Broström, Linus and Nilsson, Anna}},
  issn         = {{2578-2355}},
  keywords     = {{Humans; Decision Making; Mental Competency; Informed Consent/ethics; Research Subjects/legislation & jurisprudence; Persons with Disabilities; Disability Discrimination}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{20--33}},
  publisher    = {{John Wiley & Sons Inc.}},
  series       = {{Ethics & Human Research}},
  title        = {{Including Research Subjects without Decision-Making Capacity Only as Last Resort}},
  url          = {{http://dx.doi.org/10.1002/eahr.70013}},
  doi          = {{10.1002/eahr.70013}},
  volume       = {{48}},
  year         = {{2026}},
}