Navigating Health Data Ethics

Navigating Health Data Ethics

 
Personal DataStandard FormatHealth-relatedDataSecurityEnrolmentScientific ResearchAutonomyPrioritiastionGenetic DataSocietySharingTransparencyProtectionPrivacyTimelinessWithdrawalGovernanceBiobankThird PartiesMonitor &EvaluationConsentNon-genetic DataConfidentialitySamplesEthics ReviewCommitteeIdentifyingResultsResearchInstitutionAttributionDocumentationAnonymisedNo ProfitCollectionUsageFurther UsesDistributionStorageCorrectionAuthorisationData CoordinationCentreSpecific ConsentDestructionCodedAccountabilityRemovalGeneral ConsentLawCodes of ConductResearchParticipantHuman RightsResearchersProcessingNo ExclusivityQuality Standards
Ethical Principles
Respect of Persons
Data Fairness
Privacy
Accountability

Ethical Principles

Respect of Persons

The rights and dignity of anyone contributing personal data and/or human samples in the context of healtg research, must be respected, protected and promoted.

Data Fairness

Data that can be used for research purposes and research results should be made available for further research use to advance the common good of scientific knowledge.

Privacy

The privacy of research participants and the confidentiality of their personal information must be safeguarded.

Accountability

Accountability mechanisms should ensure fair, lawful and transparent processing of personal data and handling of human biological material.