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Including Research Subjects without Decision-Making Capacity Only as Last Resort
Linus Broström1, Anna Nilsson2
1Docent (associate professor) at the section of medical ethics in the Department of Clinical Sciences, Lund, at Lund University.
Ethics & Human Research
|July 2, 2026
Summary
This study examines the ethical principle preventing adults lacking decision-making capacity from research participation. It argues for qualifying this rule to balance protection with inclusion for persons with disabilities.
Area of Science:
- Bioethics
- Disability Rights
- Research Ethics
Background:
- Ethical principle: Adults without decision-making capacity should not be included in research if capable participants are available.
- Disability rights perspective: This principle may be overly protective, limiting inclusion for persons with disabilities.
- Need for balance: Current ethical guidelines may not adequately support equitable research participation for all individuals.
Purpose of the Study:
- Analyze the ethical and legal basis of the principle restricting research participation for adults lacking decision-making capacity.
- Evaluate the principle from a disability rights viewpoint, focusing on equitable inclusion.
- Propose modifications to the principle to better balance protection and participation.
Main Methods:
- Ethical analysis of existing research principles.
- Legal review of consent and capacity regulations.
- Disability rights framework application.
Main Results:
- The principle, while intended to protect vulnerable populations, can inadvertently exclude persons with disabilities from research opportunities.
- Current application of the principle may not fully align with the goal of equitable participation in scientific research.
- A qualified approach is needed to ensure both protection and inclusion.
Conclusions:
- The ethical principle regarding research participation for adults without decision-making capacity requires qualification.
- Modifications should enhance opportunities for persons with disabilities to participate in research on an equal footing.
- A balanced approach is essential to uphold ethical standards while promoting inclusive research practices.
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