Table 2.
How COVID-19-related data sharing efforts map to established principles for data sharing
| How COVID-19 data sharing resources correspond | Seven GloPID-R principles of sharing data in public health emergencies14 | COVID-19 NCS data Sharing principles15 | International code of conduct for data sharing in genomic research16 | GA4GH framework for responsible sharing of genomic and health-related data17 | CARE principles for Indigenous data governance18 | |
|---|---|---|---|---|---|---|
| Collaboration | Six platforms and two registries had explicit connections between clinical–epidemiological and other data types at the participant-level; registry data were siloed by comorbidity, body system, and population | .. | Yes | Yes | Yes | .. |
| FAIR data | Nine platforms and five registries met the four basic criteria for FAIRness; no platforms and ten registries met none of the criteria | Yes | Yes | Yes | .. | .. |
| Ethical | Two platforms and three registries were restricted to data that included broad consent for future use or waiver of consent; eight platforms and 20 registries only shared de-identified data; three platforms and five registries did not seek ERC approval (of those that specifically mentioned approval-related information); six registries and 11 platforms required or suggested citation of data providers in publications; 24 registries and one platform required or suggested acknowledgement of data providers or co-authorship on related publications | Yes | Yes | Yes | Yes | Yes |
| Community engagement | Three platforms and ten registries mentioned community engagement; two platforms and 17 registries included a data dashboard | Yes | Yes | Yes | .. | Yes |
| Transparent governance | Eight platforms and no registries were open access or had some data that were open access; six platforms and 17 registries had a DAC; data providers decided data access for six platforms and one registry; seven registries and one platform did not specify how data access was mediated | Yes | Yes | Yes | Yes | .. |
| Compliance with data protection laws | Not assessed | .. | Yes | Yes | Yes | .. |
| Evaluate platform utility | 17 platforms and 39 registries provided some measure of resource utility | .. | Yes | .. | Yes | Yes |
| Quality | Not assessed | Yes | .. | Yes | Yes | .. |
| Timely | As of February 2023, participant-level data were available for 17 platforms and 24 registries | Yes | .. | .. | .. | .. |
CARE=Collective Benefit, Authority to Control, Responsibility, Ethics. DAC=data access committee. ERC=ethics review committee. FAIR=finable, accessible, interoperable, reusable. GA4GH=Global Alliance for Genomics and Health. GloPID-R=Global Health Security Initiative and Global Research Collaboration for Infectious Disease Preparedness. NCS=National Core Studies.