Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives

Area of Science:

• Medical Ethics
• Pediatric Pain Research
• Intellectual Disability Research

Background:

• Children and adolescents with severe intellectual disabilities face inequities in pain care.
• Limited pain research includes this vulnerable population due to ethical complexities.
• Existing International Association for the Study of Pain guidelines offer general, but not specific, ethical guidance.

Purpose of the Study:

• To delineate the ethical challenges of pain research in children and adolescents with severe intellectual disabilities.
• To supplement existing ethical guidelines for pain research in this population.
• To highlight key considerations for ethical research design, conduct, review, and evaluation.

Main Methods:

• This viewpoint discusses ethical challenges using a framework for assessing clinical research ethics.
• It focuses on issues unaddressed in current pain research ethical guidance.
• Analysis considers the specific needs of non-verbal individuals and those unable to provide informed consent.

Main Results:

• Standard pain assessment tools are often unsuitable for non-verbal individuals with severe intellectual disabilities.
• Obtaining informed consent or assent, and recognizing dissent, are significant ethical hurdles.
• Existing ethical frameworks require adaptation to address the unique vulnerabilities of this population.

Conclusions:

• Ethical pain research with children and adolescents with severe intellectual disabilities necessitates tailored approaches.
• Modified assessment methods and consent processes are crucial for ethical research.
• Further development of specific ethical guidelines is needed to ensure the protection and inclusion of this population in pain research.