Intellectual Disability and Supported Decision-Making in Clinical Research: Anticipating Ethical Challenges

Area of Science:

• Bioethics
• Clinical Research Ethics
• Disability Studies

Background:

• Supported decision-making (SDM) is crucial for persons with intellectual disability (PWIDs) in clinical practice.
• Its application in clinical research for PWIDs, particularly those with uncertain capacity, is underexplored.
• Ethical tensions exist between research benefits for PWIDs and preventing exploitation.

Purpose of the Study:

• To examine the use of supported decision-making in clinical research involving persons with intellectual disability.
• To identify and analyze key challenges in implementing SDM for PWIDs in research settings.
• To offer guidance for addressing these challenges in research ethics.

Main Methods:

• Analysis of ethical challenges through case examples from ethics consultations.
• Review of relevant literature on supported decision-making and intellectual disability in research.
• Interrogation of specific issues: communication, influence, speculation, and displacement.

Main Results:

• Communication barriers can hinder effective SDM for PWIDs in research.
• The potential for undue influence on decision-making requires careful management.
• Speculation and displacement of autonomy are significant ethical concerns.

Conclusions:

• Addressing communication and influence challenges is vital for ethical SDM in research with PWIDs.
• Strategies are needed to mitigate risks of speculation and displacement in research involving PWIDs.
• Further guidance is required to ensure ethical and effective SDM for PWIDs in clinical research.