Overview
Research Ethics for All provides community research partners with developmental disabilities accessible education in ethical issues in social and behavioral research with people. This education is focused on the roles and responsibilities of community research partners.
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:
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Finding people to be in research studies (recruitment)
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Working with people to make decisions about being in research studies (consent and assent)
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Collecting information from people and working with information that can tell us who a person is (data collection and individually identifiable data)
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Writing about research and sharing answers to research questions (authorship and dissemination)
Research Ethics for All uses ideas from the Disability Rights Movement to help us think about important ideas in research ethics. These ideas include showing respect to people by assuming they can do things and facilitating responsible their 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 provides resources for you to pursue IRB approval of Research Ethics for All. Click here to see the institutions that have approved Research Ethics for All.
Learning Outcomes
Research Ethics for All supports community research partners to learn about ethical practices and decision-making in research with people. Completion of the training provides certification in research ethics and compliance for topics relevant to community research partners engaged in social and behavioral research.
Research Ethics for All supports community research partners to achieve the following learning outcomes:
Define research with people, jobs of different people on a research team, and ways community research partners can make research better.
State why there are rules for research with people and rights of research participants (Belmont principles).
Describe how to use IRB-approved recruitment and consent materials, follow eligibility criteria, and work with people with and without guardians to make informed, voluntary, and ongoing decisions about being in a research study.
Discuss how to keep research participants safe and what to do when there is information that cannot stay confidential.
Explain responsibilities of community research partners, including ways to protect the rights and well-being of people who are in research and community researchers, one’s own team's rules, conflicts of interest, and authorship.
When Research Ethics for All is delivered by a project leader, learners can receive certification by completing the certification activities.
Audience
Research Ethics for All is for community research partners without advanced degrees in scientific, human research-oriented disciplines who will interact with research participants and/or their individually identifiable information for research purposes. Often community research partners do not have a primary affiliation with an academic institution.
Training Development
Research Ethics for All was created by people with developmental disabilities, disability service providers, researchers, and IRB administrators and members.
We developed Research Ethics for All by working with people with developmental disabilities, disability service providers, researchers, and IRB administrators and members to decide together what community research partners with developmental disabilities needed to know. We reviewed other research ethics training programs, looked at ethical issues related to doing research with people with developmental disabilities, and shared our experience and expertise. We also worked together to make Research Ethics for All disability accessible.
Process for Developing Research Ethics for All
CITI Social-Behavioral-Educational
NIH Research Ethics Training
CIRTIfication
CPERT
In research with people with developmental disabilities?
For community research partners with developmental disabilities?
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
IRB administrator and members
Researchers
Project Team
University of New Hampshire
Publications and Webinars
Schwartz, A., McDonald, K, & Research Ethics for All Consortium. (online first). Research ethics for all: Development of a social-behavioral research ethics education program for community research partners with developmental disabilities. Disability and Health Journal, 101675.
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.
McDonald, K. & Schwartz, A. (Oct 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.
McDonald, K. & Schwartz, A. (June 2023). Accessible human research ethics education for community researchers with developmental disabilities. Presentation at the American Association on Intellectual and Developmental Disabilities Annual Meeting, Pittsburgh, PA.
McDonald, K., Schwartz, A, & Brodeur, M. (June 2024). Enhancing access to research participation for adults with intellectual and/or developmental disabilities: Strategies to address gatekeeping and meaningful consent. Presented at the American Association on Intellectual and Developmental Disabilities Annual Meeting, Louisville, KY.
Funding
Research Ethics for All was funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EASC-IDD-00301). 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
McDonald, K. & Schwartz, A. (2023). Research Ethics for All: Accessible Research Ethics Education for Community Research Partners. Syracuse University, Massachusetts General Hospital Institute of Health Professions, Institute on Disability: University of New Hampshire www.re4all.org
© 2023 Syracuse University, MGH Institute of Health Professions, and Institute on Disability: University of New Hampshire. All rights reserved.
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