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GCRI · Sociedade e desenvolvimento humano

Ética da investigação 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.

01Registrar

Inclusive research ethics on the record.

02A pergunta

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.

Mecanismo

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.

Mecanismo

Harms can follow research

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

Mecanismo

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.

Mecanismo

Benefits should be shared

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

03Métodos e evidência

How inclusive research ethics is modelled, measured and tested.

O modelo, os seus pressupostos, os seus dados e a sua incerteza, na forma que um cientista ou engenheiro verificaria. As estruturas seguem métodos publicados. Os valores representados são ilustrativos, não conclusões.

Modelo de 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.

++−+SociedadeInformaçãoComunidadesEconomiaR de reforçoB equilíbrio
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.
Princípios orientadores FAIR · GO FAIR e FORCE11W3C PROV · World Wide Web ConsortiumOrientação sobre o tratamento consistente das incertezas · IPCCCEOS Analysis Ready Data · Committee on Earth Observation Satellites
04Em todos os domínios

Ethics govern research with people in every domain.

05Indicadores

O que é medido e com que qualidade.

Cada indicador leva sua unidade, sua periodicidade, o tipo de fonte por trás dele e a etiqueta de evidência que um valor levaria. Nenhum valor é mostrado: um programa os fornece sob sua própria autoridade.

IndicadorUnidadeCadênciaTipo de fonteRótulo
Studies with ethics reviewpercent of published studies reporting approvalpor revisãoPublication auditsOBSERVADO
Research with community engagement documentedpercent of projectspor revisãoProject recordsDECLARADO
Local researchers in authorshipshare of authors from study countriespor revisãoBibliometric analysisOBSERVADO
Data management plans with protection measurespercent of funded projectspor revisãoFunder recordsDECLARADO
Results returned to participants or communitiespercent of projectspor revisãoProject recordsDECLARADO
Ethics committees with capacity for social researchcontagempor avaliaçãoInstitutional recordsREPORTADO
06Fontes

De onde vêm as evidências.

Conjuntos de dados públicos nomeados e registros institucionais, cada um com sua classe de licença. As fontes obtidas por acordo só são usadas nos seus termos e nunca são republicadas.

FonteO que ofereceClasse de licença
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
Recomendação da UNESCO sobre a ciência abertaPrinciples on inclusion and equity in sciencePublic, UNESCO terms
Princípios CARE para a governação de dados indígenasCollective rights in dataPublic, GIDA terms
Bibliometric databases such as OpenAlexAuthorship and collaboration patternsAberto, CC0
07Decisões

Quem decide, e a que servem as evidências.

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

Quem decideA perguntaEvidências a que esta página serve
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

Produtos que este tema gera

  • 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
08Questões centrais

As questões que os especialistas levantam.

  • 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?
09Mecanismos

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.

10Métodos e dados

Methods and safeguards.

Análise

Ethical review

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

Participação

Co-design

Communities shape questions, methods and interpretation.

Dados

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.

11Métodos

Como é estudado e o que os métodos não podem dizer.

12Where this page’s references

Where this page’s references lead.

Os organismos e documentos à luz dos quais esta página é lida. O estado e as edições mudam; cada ligação leva ao organismo emissor.

13Perguntas

Perguntas e respostas.

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.
RelatóriosContribuir

Contribua com evidências a partir desta página.

Relatórios 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.

GCRISociedade e desenvolvimento humanoRisco e Resiliência dos Sistemas NacionaisResumo de evidências
Sociedade e desenvolvimento humano

Traga um método, um conjunto de dados ou uma pergunta.

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