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A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research

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Risks and Safeguards in Social-Behavioural Research With Adults With Developmental Disabilities: A Qualitative

Katherine McDonald¹, Madison Brodeur², Ariel Schwartz³

¹Public Health, Syracuse, New York, USA.

Journal of Applied Research in Intellectual Disabilities : JARID

|March 7, 2025

Summary

Researchers identified participant risks and safeguards in social-behavioural studies involving adults with developmental disabilities. Ensuring participant well-being and respecting their contributions are key to ethical research practices.

Keywords:

developmental disability inclusion research ethics responsible risks safeguards

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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

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Published on: June 6, 2020

Area of Science:

Social Sciences
Psychology
Disability Studies

Background:

Social-behavioural research involving adults with developmental disabilities presents unique ethical considerations.
Understanding participant-level risks and implemented safeguards is crucial for ethical research conduct.

Purpose of the Study:

To systematically review and identify participant-level risks and safeguards in social-behavioural research with adults with developmental disabilities.
To inform ethical guidelines and best practices for researchers in this field.

Main Methods:

A qualitative systematic review of peer-reviewed research published between 2009 and 2023.
Searches across eight databases and hand searches of reference lists were conducted.
Thematic analysis using independent data extraction, coding, and investigator triangulation was employed.

Main Results:

Identified various risks associated with research participation, including physical, relational, psychological, and social risks.
Also identified risks related to privacy and confidentiality.
Key safeguards included using guiding frameworks, minimizing participant burden, ensuring privacy, and promoting psychological and relational well-being.

Conclusions:

Researchers should prioritize creating positive experiences for participants.
Participants should feel valued, respected, and empowered by their research involvement.
Fostering a positive research environment enhances the contribution of adults with developmental disabilities to scientific discovery.