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GCRI · Società e sviluppo umano

Etica della ricerca inclusiva

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.

01Registrare

Inclusive research ethics on the record.

02La domanda

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.

Meccanismo

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.

Meccanismo

Harms can follow research

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

Meccanismo

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.

Meccanismo

Benefits should be shared

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

03Metodi ed evidenze

How inclusive research ethics is modelled, measured and tested.

Il modello, le sue ipotesi, i suoi dati e la sua incertezza, nella forma in cui uno scienziato o un ingegnere li verificherebbe. Le strutture seguono metodi pubblicati. I valori rappresentati sono illustrativi, non risultati.

Modello di sistema

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

++−+SocietàInformazioneComunitàEconomiaR di rinforzoB bilanciamento
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.
Principi guida FAIR · GO FAIR e FORCE11W3C PROV · World Wide Web ConsortiumGuidance on consistent treatment of uncertainties · IPCCCEOS Analysis Ready Data · Comitato sui satelliti per l'osservazione della Terra
04Tra i domini

Ethics govern research with people in every domain.

05Indicatori

Cosa viene misurato e con quale accuratezza.

Ogni indicatore riporta la sua unità, la sua cadenza, il tipo di fonte su cui si basa e l'etichetta di evidenza che un valore riporterebbe. Non sono mostrati valori: un programma li fornisce sotto la propria autorità.

IndicatoreUnitàCadenzaTipo di fonteEtichetta
Studies with ethics reviewpercent of published studies reporting approvalper revisionePublication auditsOSSERVATO
Research with community engagement documentedpercent of projectsper revisioneProject recordsDICHIARATO
Local researchers in authorshipshare of authors from study countriesper revisioneBibliometric analysisOSSERVATO
Data management plans with protection measurespercent of funded projectsper revisioneFunder recordsDICHIARATO
Results returned to participants or communitiespercent of projectsper revisioneProject recordsDICHIARATO
Ethics committees with capacity for social researchconteggioper valutazioneInstitutional recordsRIPORTATO
06Fonti

Da dove provengono le evidenze.

Set di dati pubblici e registri istituzionali specifici, ciascuno con la sua classe di licenza. Le fonti soggette ad accordo sono utilizzate solo alle relative condizioni e mai ripubblicate.

FonteCosa fornisceClasse di licenza
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
Raccomandazione dell'UNESCO sulla scienza apertaPrinciples on inclusion and equity in sciencePublic, UNESCO terms
Principi CARE per la governance dei dati indigeniCollective rights in dataPublic, GIDA terms
Bibliometric databases such as OpenAlexAuthorship and collaboration patternsAperto, CC0
07Decisioni

Chi decide, e a cosa servono le evidenze.

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

Chi decideLa domandaEvidenze fornite da questa pagina
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

Output prodotti da questo argomento

  • 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
08Questioni centrali

Le domande che si pongono gli esperti.

  • 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?
09Meccanismi

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.

10Metodi e dati

Methods and safeguards.

Valutazione

Ethical review

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

Partecipazione

Co-design

Communities shape questions, methods and interpretation.

Dati

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.

11Metodi

Come viene studiato, e cosa i metodi non possono dire.

12Where this page’s references

Where this page’s references lead.

Gli organismi e i documenti alla luce dei quali si legge questa pagina. Stato ed edizioni cambiano; ogni link porta all'organismo emittente.

13Domande

Domande e risposte.

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.
RapportiContribuisci

Contribuisci con evidenze da questa pagina.

Rapporti 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.

GCRISocietà e sviluppo umanoRischio e resilienza dei sistemi nazionaliNota sulle evidenze
Società e sviluppo umano

Porta un metodo, un set di dati o una domanda.

Informazioni e richieste sono aperte oggi. Una richiesta riceve un riferimento e indica il passo successivo; candidature, pagamenti, assegnazioni di calcolo e registrazioni si aprono solo quando esistono il team, le condizioni e la capacità di revisione.