Research ethics for all: Development of a social-behavioral research ethics education program for community research partners with developmental disabilities.

Abstract

Background: People with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles.

Objectives: We developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities.

Methods: We collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility.

Results: The training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher.

Conclusions: Research Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.