TY - JOUR
T1 - Research ethics for all
T2 - Development of a social-behavioral research ethics education program for community research partners with developmental disabilities
AU - Research Ethics for All Consortium
AU - Schwartz, Ariel E.
AU - McDonald, Katherine
AU - Ahlers, Kaitlyn
AU - Anderson, Emily
AU - Ausderau, Karla
AU - Corey, Jesse
AU - Durkin, Brendan
AU - Fialka-Feldman, Micah
AU - Gassner, Dena
AU - Heath, Karen
AU - Jones, Jennifer
AU - Maddox, Brenna
AU - Myers, Jacob
AU - Nelis, Tia
AU - Paiewonsky, Maria
AU - Pellien, Casey
AU - Raymaker, Dora
AU - Richmond, Pamela
AU - Silverman, Benjamin C.
AU - Terrell, Pamela
AU - Tillman, Ivy
AU - Vetoulis-Acevedo, Mariana
N1 - Publisher Copyright:
© 2024 Elsevier Inc.
PY - 2025/1
Y1 - 2025/1
N2 - 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.
AB - 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.
KW - Accessibility
KW - Community-based participatory research
KW - Ethics
KW - Inclusive research
KW - Intellectual and developmental disability
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UR - http://www.scopus.com/inward/citedby.url?scp=85201289402&partnerID=8YFLogxK
U2 - 10.1016/j.dhjo.2024.101675
DO - 10.1016/j.dhjo.2024.101675
M3 - Article
C2 - 39142940
AN - SCOPUS:85201289402
SN - 1936-6574
VL - 18
JO - Disability and Health Journal
JF - Disability and Health Journal
IS - 1
M1 - 101675
ER -