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GCRI · Société et développement humain

Éthique de la recherche inclusive

Research with people, especially those affected by crises, poverty or discrimination, raises questions of consent, harm, power and benefit. Inclusive research ethics asks that participants be respected and protected, that communities share in shaping and benefiting from research, and that data be governed responsibly. This page sets out the principles and practices involved, how they are assessed, and what evidence serves researchers, ethics committees and funders.

01Registre

Inclusive research ethics on the record.

02La question

Inclusive research ethics: how the risk develops.

Participation, consent and local knowledge. The dossier below sets out how the risk develops, what is measured, where the data come from, how it is modelled and who decides.

Mécanisme

Consent must be informed and free

Participants need to understand what research involves and be free to refuse. Crises, dependence on aid and power differences can undermine free consent.

Mécanisme

Harms can follow research

Data can be used to identify, stigmatise or target people. Protecting confidentiality and minimising data collection reduce these risks.

Mécanisme

Communities should shape research

Research designed with communities is more relevant and more likely to benefit them, and helps correct imbalances between researchers and participants.

Mécanisme

Benefits should be shared

Results, data and capacity should return to the communities and countries where research takes place.

03Méthodes et preuves

How inclusive research ethics is modelled, measured and tested.

Le modèle, ses hypothèses, ses données et son incertitude, sous la forme qu'un scientifique ou un ingénieur vérifierait. Les structures suivent des méthodes publiées. Les valeurs représentées sont illustratives, ce ne sont pas des résultats.

Modèle de système

The couplings between the systems in inclusive research ethics: signs of influence, a reinforcing and a balancing loop, and cross-links where stress jumps.

++−+SociétéInformationCommunautésÉconomieR renforçanteB équilibrage
Causal loop diagram from the page’s systems; signs show the direction of influence. Illustrative structure for a system dynamics or network model, not estimated couplings.
Principes directeurs FAIR · GO FAIR et FORCE11W3C PROV · World Wide Web ConsortiumOrientations sur le traitement cohérent des incertitudes · GIECCEOS Analysis Ready Data · Comité sur les satellites d'observation de la Terre
04À travers les domaines

Ethics govern research with people in every domain.

05Indicateurs

Ce qui est mesuré, et avec quelle qualité.

Chaque indicateur porte son unité, sa périodicité, le type de source qui le sous-tend et l'étiquette de preuve que porterait une valeur. Aucune valeur n'est affichée : un programme les fournit sous sa propre autorité.

IndicateurUnitéFréquenceType de sourceÉtiquette
Studies with ethics reviewpercent of published studies reporting approvalpar examenPublication auditsOBSERVÉ
Research with community engagement documentedpercent of projectspar examenProject recordsDÉCLARÉ
Local researchers in authorshipshare of authors from study countriespar examenBibliometric analysisOBSERVÉ
Data management plans with protection measurespercent of funded projectspar examenFunder recordsDÉCLARÉ
Results returned to participants or communitiespercent of projectspar examenProject recordsDÉCLARÉ
Ethics committees with capacity for social researchnombrepar évaluationInstitutional recordsDÉCLARÉ
06Sources

D'où proviennent les données probantes.

Jeux de données publics et registres institutionnels nommés, chacun avec sa catégorie de licence. Les sources fournies dans le cadre d'accords ne sont utilisées que selon leurs conditions et ne sont jamais republiées.

SourcesCe qu'elle apporteCatégorie de licence
CIOMS International Ethical Guidelines for Health-related Research Involving HumansEthical guidance for research in diverse settingsPublic, CIOMS terms
Global Code of Conduct for Research in Resource-Poor SettingsPrinciples of fairness, respect, care and honestyPublic, terms to check
Recommandation de l'UNESCO sur la science ouvertePrinciples on inclusion and equity in sciencePublic, UNESCO terms
Principes CARE pour la gouvernance des données autochtonesCollective rights in dataPublic, GIDA terms
Bibliometric databases such as OpenAlexAuthorship and collaboration patternsOuvert, CC0
07Décisions

Qui décide, et à quoi servent les données probantes.

Society and Human Development prepares evidence. The decisions below are taken by the authorities named, under their own rules, and never by the platform.

Qui décideLa questionDonnées probantes servies par cette page
Ethics committeesWhether research is ethical and how to monitor itChecklists; protection plans
Researchers and research teamsHow to design inclusive and protective researchEngagement and benefit-sharing guides
FundersWhat ethics and equity conditions to setAudit evidence

Résultats que produit ce thème

  • Ethics review checklists for research in crises
  • Community engagement and benefit-sharing guides
  • Data protection plans for research with vulnerable groups
  • Audits of authorship and benefit sharing
08Questions essentielles

Les questions que se posent les experts.

  • Who defines the research question, and do affected people have a voice in it?
  • Is consent truly informed and voluntary, especially in crises and unequal relationships?
  • How is local and Indigenous knowledge recognised, credited and protected?
  • What data are collected, who controls them and how could they cause harm?
  • What do participants and communities receive from the research?
09Mécanismes

Principles in practice.

Ethical research begins with respect for persons, beneficence and justice, principles long established in research ethics, applied with care to settings of crisis and inequality. Consent must be informed, voluntary and ongoing, which is difficult when people depend on assistance or fear consequences. Research should minimise burden, avoid repeated assessment of the same communities and stop when risks outweigh benefits.

Participation ranges from consultation to co-design and community-led research. Indigenous data sovereignty principles assert the rights of Indigenous peoples to govern data about them. Local knowledge of hazards, ecosystems and coping often precedes and complements scientific data, and should be credited and used only with permission. Data protection, including minimisation, anonymisation and secure storage, protects participants from identification and misuse.

Crisis settings add specific duties. Researchers must avoid diverting resources from response, coordinate to prevent over-assessment, protect staff and participants, and recognise that people in distress may agree to take part because they hope for assistance. Clear explanation that research is separate from aid is part of valid consent.

10Méthodes et données

Methods and safeguards.

Examen

Ethical review

Independent review of protocols before research starts, with attention to risk and consent.

Participation

Co-design

Communities shape questions, methods and interpretation.

Données

Protection by design

Collect only what is needed, protect identities and agree retention and use.

Limits: ethical review cannot anticipate every situation, power imbalances persist even with good procedures, and anonymisation can fail when small groups or locations are described.

11Méthodes

Comment c'est étudié, et ce que les méthodes ne peuvent pas dire.

12Where this page’s references

Where this page’s references lead.

Les organismes et documents à l'aune desquels cette page se lit. Les statuts et éditions changent ; chaque lien mène à l'organisme émetteur.

13Questions

Questions et réponses.

What is informed consent?
Agreement to take part in research given freely by a person who understands its purpose, procedures, risks, benefits and their right to withdraw.
What is benefit sharing in research?
Arrangements that return results, data, capacity or other benefits to the participants, communities and countries where research takes place.
Why is research in crises ethically sensitive?
Because people may be distressed, dependent on aid or at risk, which can undermine free consent and raise the harm of data misuse.
Can participants withdraw?
Yes. Participants can withdraw at any time, and their data are handled as the consent terms provide.
Who owns community knowledge?
The communities that hold it. It is used only with permission and credited as they agree.
How do I report an ethical concern?
Write to the safeguarding address above. Concerns are reviewed by people independent of the research team.
RapportsContribuer

Apportez des éléments de preuve depuis cette page.

Rapports is the Consortium’s quarterly publication. What you know about this subject can become evidence, a case or a correction in the next edition, credited to you and published under CC BY 4.0 where it is your own work.

GCRISociété et développement humainRisques et résilience des systèmes nationauxNote de synthèse sur les preuves
Société et développement humain

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