Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access
{"Open":[0],"data":[1,27,81,118,134,146],"has":[2],"become":[3],"central":[4],"to":[5,19,42],"biomedical":[6],"research":[7],"and":[8,17,47,56,66,87,97,107,120,144,169,196,200,209],"public":[9,39,94,171],"health,":[10],"but":[11],"health":[12,95,99],"information":[13],"is":[14,28],"uniquely":[15],"sensitive":[16],"difficult":[18],"share":[20],"responsibly.":[21],"In":[22],"this":[23],"narrative":[24,51],"review,":[25],"open":[26,183],"considered":[29],"as":[30,187],"a":[31,177,188],"spectrum":[32,189],"of":[33,190],"health-data":[34],"sharing":[35,82,192],"arrangements,":[36,193],"ranging":[37],"from":[38,128],"aggregate":[40],"datasets":[41],"controlled-access":[43],"repositories,":[44],"federated":[45],"analysis,":[46],"synthetic":[48],"data.":[49],"This":[50],"review":[52],"synthesizes":[53],"the":[54,63],"scientific":[55],"societal":[57],"rationale":[58],"for":[59,181],"greater":[60],"openness":[61,160,186],"with":[62],"ethical,":[64],"legal,":[65],"governance":[67],"constraints":[68],"that":[69,153,204],"shape":[70],"what":[71],"\\"open\\"":[72],"can":[73,205],"realistically":[74],"mean":[75],"in":[76,112],"healthcare.":[77],"We":[78,125,173],"examine":[79],"how":[80],"supports":[83],"reproducibility,":[84],"machine":[85],"learning,":[86],"more":[88],"efficient":[89],"research,":[90],"while":[91],"also":[92],"enabling":[93],"surveillance":[96],"learning":[98],"systems.":[100],"Against":[101],"these":[102,149],"benefits,":[103],"we":[104],"analyze":[105],"privacy":[106],"re-identification":[108],"risks,":[109],"consent":[110],"challenges":[111],"large-scale":[113],"secondary":[114],"use,":[115],"inequities":[116],"including":[117],"colonialism,":[119],"tensions":[121],"introduced":[122],"by":[123,175],"commercialization.":[124],"integrate":[126],"lessons":[127],"prominent":[129],"case":[130],"examples":[131],"spanning":[132],"pandemic":[133],"sharing,":[135],"genomic":[136],"initiatives,":[137],"population":[138],"registries,":[139],"patient-led":[140],"rare":[141],"disease":[142],"infrastructures,":[143],"regional":[145],"spaces.":[147],"Across":[148],"domains,":[150],"experience":[151],"suggests":[152],"durable":[154],"progress":[155],"depends":[156],"less":[157],"on":[158,162],"unrestricted":[159],"than":[161],"calibrated":[163],"access,":[164],"privacy-preserving":[165],"architectures,":[166],"clear":[167],"accountability,":[168],"sustained":[170],"engagement.":[172],"conclude":[174],"proposing":[176],"pragmatic":[178],"ethical":[179],"orientation":[180],"healthcare":[182],"data:":[184],"treat":[185],"controlled":[191],"embed":[194],"equity":[195],"reciprocity":[197],"into":[198],"governance,":[199],"institutionalize":[201],"trust-building":[202],"measures":[203],"persist":[206],"beyond":[207],"emergencies":[208],"political":[210],"cycles.":[211]}
Authors
- Zeinab Al Mokdad
- Kazim Mohammed
- Ali Msheik (ORCID: https://orcid.org/0000-0002-4033-1985)
- Rubén Peralta (ORCID: https://orcid.org/0000-0003-2817-0194)
- Nasser Alsaad
- Ghaya Al-Rumaihi
Institutions
- Lebanese University (LB)
- Hamad Medical Corporation (QA)
Publication Details
- Journal
- Health Care Analysis
- Published
- 2026-09-17
- DOI
- https://doi.org/10.1007/s10728-026-00598-7
- Primary Topic
- COVID-19 Digital Contact Tracing
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Qatar National Library