About Us

Overview

Research Ethics for All provides community research partners with developmental disabilities accessible education in ethical issues in patient-centered research, including patient-centered comparative clinical effectiveness research and the responsible conduct of research. This education is focused on the roles and responsibilities of community research partners.

Community research partners can complete this training and earn certification for research ethics education. Research Ethics for All prepares community research partners for responsibilities related to The Common Rule–the US policy for protecting research participants. Research Ethics for All also helps community researchers understand their rights and responsibilities related to the Responsible Conduct of Research.  

Research Ethics for All prepares community research partners for responsibilities related to:

  • Finding people to be in research studies (recruitment)
  • Working with children and adults to make decisions about being in research studies (consent and assent)
  • Collecting information from people, conducting clinical trials, conducting patient-centered comparative clinical effectiveness research, working with information that can tell us who a person is (data collection, individually identifiable data)
  • Understanding risks and safeguards
  • Writing about how research was done and research findings (authorship and dissemination)

Research Ethics for All uses ideas from the Disability Rights Movement to inform research ethics. These ideas include showing respect to people by assuming they can do things and facilitating their responsible inclusion in research. These ideas from the Disability Rights Movement can identify approaches to research and inclusion of people with disabilities in research that balance rights to self-determination and safety. 

This website also provides resources for pursuing Institutional Review Board (IRB) approval of Research Ethics for All as an acceptable research ethics training program leading to certification. See universities that have approved Research Ethics for All. 

Research Ethics for All is also available via the CITI Program to subscribers of the Human Subjects Research (HSR) series subscribers. The university office that manages access to CITI educational programs can add Research Ethics for All via the CITI order form.

Learning Outcomes

Research Ethics for All supports community research partners to learn about ethical practices and decision-making in patient-centered research, including patient-centered comparative clinical effectiveness research. Completion of the training provides certification in research ethics and compliance for topics relevant to community research partners engaged in patient-centered research.  

Research Ethics for All supports community research partners to achieve the following learning outcomes: 

  1. Define research with people, jobs of different people on a research team, and ways community research partners can make research more ethical and respectful. 
  2. Describe rules related to research with people (Belmont principles, The Common Rule, HIPAA, FERPA, FDA, GINA)
  3. State why there are rules for research with people and rights of research participants.
  4. Describe how to use IRB-approved recruitment and consent materials, follow eligibility criteria, and work with children and adults with and without guardians to make informed, voluntary, and ongoing decisions about being in a research study. 
  5. Discuss how to keep research participants safe, including in clinical trials and patient-centered comparative clinical effectiveness research, and what to do when there is information that cannot stay confidential. 
  6. Explain responsibilities of community research partners, including ways to protect the rights and well-being of people who are in research and community research partners, one’s own team's rules, conflicts of interest, and authorship.

When Research Ethics for All training is delivered by a project leader, learners earn certification by completing the certification activities.

Training Audience

Research Ethics for All is for community research partners without advanced scientific degrees who will interact with research participants and/or their individually identifiable research information. Research Ethics for All can also be used for community research partners who want to learn about research ethics but don’t need training certification.

Training Development

Research Ethics for All was created by people with developmental disabilities, disability service providers, researchers, and human research protections experts. 

We developed Research Ethics for All by deciding together what community research partners with developmental disabilities need to know. We reviewed other research ethics training programs, identified ethical issues related to doing patient-centered comparative clinical effectiveness research with people with developmental disabilities, and shared our experience and expertise. We worked together to make Research Ethics for All disability accessible.  

Process for Developing Research Ethics for All:

Training Analysis
What do other research ethics education programs teach?
  • CITI Social-Behavioral-Educational Comprehensive and Refresher courses

  • CITI Biomedical Comprehensive and Refresher courses

  • CITI Responsible Conduct of Research

  • NIH Research Ethics Training

  • CIRTIfication

  • CPERT

Systematic Literature Review
What ethical issues are there?
  • In patient-centered comparative clinical effectiveness research and research with people with developmental disabilities?

  • For community research partners with developmental disabilities?

Stakeholder Engagement

What should Research Ethics for All teach and how can we teach it in a disability accessible way?

  • People with developmental disabilities

  • Disability service providers

  • Human research protections experts

  • Researchers

Project Team

Project Co-Leads
Syracuse University
Institute on Disability:
University of New Hampshire
Research Staff
Eulena Banzer
Madison Brodeur
Project Partners
Kaitlyn Ahlers, PhD
Dartmouth College
Emily Anderson, PhD, MPH
Loyola University of Chicago
Karla Ausderau, PhD
University of Wisconsin Madison
Jesse Corey
Jena Crafton
University of Alaska, Anchorage
Keith Diaz, PhD
Columbia University
Brendan Durkin
Dupree Edwards
University of Minnesota
Micah Fialka-Feldman
Certificate in Disability Studies
Karen Heath, MS
University of Alaska Anchorage
Dena Gassner, MSW
Jennifer Jones, PhD
Oklahoma State University
Brenna Maddox, PhD
University of North Carolina at Chapel Hill
Mariana Vetoulis-Acevedo
Eric Moody
University of Wyoming
Jacob Myers
Tia Nelis
Certificate in Disability Studies
Maria Paiewonsky, EdD
University of Massachusetts Boston
Micah Peace Urquilla , BA
Casey Pellien, BBA, CIP
University of Wisconsin Madison
Dora Raymaker, PhD
Portland State University
Pamela Richmond, MS, CIP
Boston University
Ilka Riddle, PhD
University of Cincinnati College of Medicine
Tracie Rosser, PhD
Emory University
Benjamin Silverman, MD
Mass General Brigham
Pamela Terrell
Ivy Tillman, EdD, CIP
Public Responsibility in Medicine and Research (PRIM&R)
Michael Yonas, PhD
The Pittsburgh Foundation
Students
Rachel Aruaz
Grace Brashers
Olivia Fowler
Rachel Harvey
Additional Contributors
Anita Kuiken
Lindsey Nichols
Michael Yonas

Publications and Webinars

Research Ethics for All Training

Schwartz, A., McDonald, K, & Research Ethics for All Consortium. (2025). Research ethics for all: Development of a social-behavioral research ethics education program for community research partners with developmental disabilities. Disability and Health Journal, 18(1), 101675. [Link]

Schwartz, A. E., McDonald & Research Ethics for All Consortium. (2025). Social validity of Research Ethics for All: Social-behavioral research ethics education for community research partners with developmental disabilities. Disability and Health Journal, 18(2), 101762. [Link]

Hoard, W., Standley, K., & Ipsen, C. (July 2025). Adapting Research Ethics for All: Training Centers for Independent Living in community-based research. The University of Montana, Rural Institute for Inclusive Communities. [Link]

Literature Reviews and Related Original Research

McDonald, K., Brodeur, M., & Schwartz, A. (2025). Risks and safeguards in social‐behavioural research with adults with developmental disabilities: A qualitative systematic review. Journal of Applied Research in Intellectual Disabilities, 38(2), e70031. [Link]

Brodeur, M., Schwartz, A., & McDonald, K. (2025). Researchers’ experiences with gatekeepers: Recruitment in developmental disability research. Inclusion, 1-13. [Link]

Brodeur, M., Schwartz, A., & McDonald, K. (2025). A scoping review of the ways gatekeepers may hinder or promote opportunities for people with intellectual and/or developmental disabilities to learn about research participation. Journal of Intellectual Disability Research, 69(5), 329-344. [Link]

McDonald, K. E., Schwartz, A. E., Dinerstein, R., Olick, R., & Sabatello, M. (2024). Responsible inclusion: a systematic review of consent to social-behavioral research with adults with intellectual disability in the US. Disability and Health Journal, 101669. [Link]

Webinars

McDonald, K. & Schwartz, A. (September 2023). Research Ethics for All: A new resource for engaging community research partners with developmental disabilities in research.

McDonald, K. & Schwartz, A. (October 2023). Research Ethics for All: A new resource for engaging community research partners with developmental disabilities in research. Presentation at the PCORI Annual Meeting, Washington, DC.

 

 

Funding

Research Ethics for All was funded through Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Awards (EASC-IDD-00301 and EACB-38863; Co-Leads McDonald and Schwartz). The statements presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®).

Citing

Research Ethics for All  (www.re4all.org)

© 2026 by Katherine McDonald and Ariel Schwartz is licensed under CC BY-SA 4.0. To view a copy of this license, visit https://creativecommons.org/licenses/by-sa/4.0/.  

Videos produced by 325 Productions 

Some images from nounproject.com 

Website produced by Tamarin Software

Research Ethics for All was made by people with developmental disabilities, disability service providers, researchers, and IRB administrators and members.