Ethics & partnerships

Research Ethics With Communities: Beyond the Ethics Committee

Ethics & partnerships · By the Common Inquiry editorial team · Published 2026-10-26

Most research ethics systems were designed to protect individual participants from harm in studies controlled by researchers. Participatory research changes the picture: community members become co-researchers, questions evolve, and harms and benefits fall on groups as well as individuals. Standard ethics approval remains necessary, but it is not sufficient. This article explains why, and what else research teams can do.

The foundations: Belmont, Helsinki and the Common Rule

In the United States, the Belmont Report, issued in 1979 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, set out three principles: respect for persons (including informed consent), beneficence (minimising harm and maximising benefit) and justice (fair distribution of the burdens and benefits of research). The Commission had been created by the National Research Act of 1974, passed after public revelations about the US Public Health Service syphilis study at Tuskegee, in which Black men with syphilis were observed without treatment from 1932 to 1972.

The Belmont principles shaped the US Federal Policy for the Protection of Human Subjects, known as the Common Rule, revised in 2018 with most changes taking effect in January 2019. In medicine, the World Medical Association's Declaration of Helsinki, first adopted in 1964 and revised several times, most recently in October 2024, plays a similar role internationally. Most countries have comparable national frameworks, such as Canada's Tri-Council Policy Statement.

What standard review can miss

Ethics committees (institutional review boards in the US, research ethics committees elsewhere) review research protocols before they start. Practitioners of participatory research have identified recurring mismatches:

• Evolving designs. In participatory action research, questions and methods are developed with the community after the project begins. Committees usually want a fixed protocol in advance.
• Co-researchers. Community members who collect data are neither participants nor employees in the usual sense. Their training, safety, confidentiality obligations and credit need attention.
• Group harms. Findings can stigmatise a whole neighbourhood, ethnic group or tribe even when no individual is identifiable.
• Relationships over time. Ethical obligations may continue after the study ends, such as returning results or supporting action.
• Who defines benefit. A study may pose minimal risk to individuals yet offer the community nothing, which participatory researchers regard as an ethical failure in itself.

Community engagement as an ethical requirement

International guidance increasingly treats engagement as part of ethics rather than an optional extra. The International Ethical Guidelines for Health-related Research Involving Humans, published in 2016 by the Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization, include a guideline on community engagement. It states that researchers, sponsors and health authorities should engage potential participants and communities in a meaningful participatory process from the earliest stages of research design and throughout the study.

The Global Code of Conduct for Research in Resource-Poor Settings, developed by the European Union-funded TRUST project and published in 2018, is built around four values (fairness, respect, care and honesty) and addresses the exploitation of communities in lower-income countries by researchers from wealthier ones, including "helicopter research" in which outsiders collect data and leave.

Principles written for participatory research

In the UK, Durham University's Centre for Social Justice and Community Action and the National Co-ordinating Centre for Public Engagement published Community-based participatory research: a guide to ethical principles and practice in 2012, with a second edition in 2022. The guide was developed with community and academic researchers and proposes principles including:

• mutual respect;
• equality and inclusion;
• democratic participation;
• active learning;
• making a difference;
• collective action;
• personal integrity.

For each principle, the guide discusses practical dilemmas: who should be on the research team, how to handle disagreements, what to do if a co-researcher learns something confidential about a neighbour, and how to share credit. It also argues that ethics is a continuing practice of reflection throughout a project, not a one-off approval.

Practical safeguards

1. Talk to the ethics committee early. Explain the participatory design, propose staged approval or planned amendments, and describe how decisions will be taken with community partners.
2. Use community review as well. Some communities have their own research review bodies; others use a community advisory board. Many Indigenous nations require their own approval.
3. Train co-researchers in ethics. Cover consent, confidentiality, safety and what to do when someone discloses harm. Our article on informed consent in community research goes into detail.
4. Put the partnership in writing. A partnership agreement covering governance, money, data and authorship prevents many ethical conflicts.
5. Pay people fairly. Unpaid labour by community members is itself an ethical issue; see paying community researchers.
6. Plan for group harms. Discuss with community partners how findings will be framed, and agree a process for reviewing outputs before publication.
7. Plan the ending. Decide how results will be returned, what happens to data, and how the relationship will continue or close.

Distrust is earned

Communities that are wary of researchers usually have reasons. Tuskegee is the best-known US case; others include the use of Henrietta Lacks's cells, taken without her knowledge in 1951, and the reuse of Havasupai blood samples discussed in our article on Indigenous data sovereignty. Many communities also describe less dramatic experiences: repeated surveys with no visible result, reports that portray them negatively, promises that were not kept. Ethical practice in community research starts by acknowledging that history and earning trust through consistent behaviour over time.

Sources

• National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, 1979.
• World Medical Association, Declaration of Helsinki, 1964, as revised in October 2024.
• Council for International Organizations of Medical Sciences (CIOMS) and WHO, International Ethical Guidelines for Health-related Research Involving Humans, 2016, Guideline 7.
• TRUST project, Global Code of Conduct for Research in Resource-Poor Settings, 2018.
• Centre for Social Justice and Community Action, Durham University, and National Co-ordinating Centre for Public Engagement, Community-based participatory research: a guide to ethical principles and practice, 2012; 2nd edition 2022.

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