{"id":"https://openalex.org/W4366122282","doi":"https://doi.org/10.1177/20539517231163174","title":"Recording the ethical provenance of data and automating data stewardship","display_name":"Recording the ethical provenance of data and automating data stewardship","publication_year":2023,"publication_date":"2023-01-01","ids":{"openalex":"https://openalex.org/W4366122282","doi":"https://doi.org/10.1177/20539517231163174"},"language":"en","primary_location":{"id":"doi:10.1177/20539517231163174","is_oa":true,"landing_page_url":"https://doi.org/10.1177/20539517231163174","pdf_url":"https://journals.sagepub.com/doi/pdf/10.1177/20539517231163174","source":{"id":"https://openalex.org/S2736409588","display_name":"Big Data & Society","issn_l":"2053-9517","issn":["2053-9517"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320017","host_organization_name":"SAGE Publishing","host_organization_lineage":["https://openalex.org/P4310320017"],"host_organization_lineage_names":["SAGE Publishing"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Big Data & Society","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","doaj"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://journals.sagepub.com/doi/pdf/10.1177/20539517231163174","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5024587035","display_name":"Alexander Bernier","orcid":"https://orcid.org/0000-0001-8615-8375"},"institutions":[{"id":"https://openalex.org/I5023651","display_name":"McGill University","ror":"https://ror.org/01pxwe438","country_code":"CA","type":"education","lineage":["https://openalex.org/I5023651"]}],"countries":["CA"],"is_corresponding":true,"raw_author_name":"Alexander Bernier","raw_affiliation_strings":["Human Genetics, McGill University Faculty of Medicine and Health Sciences, Montreal, Canada"],"affiliations":[{"raw_affiliation_string":"Human Genetics, McGill University Faculty of Medicine and Health Sciences, Montreal, Canada","institution_ids":["https://openalex.org/I5023651"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5092691012","display_name":"Maili Raven-Adams","orcid":"https://orcid.org/0000-0001-8824-0487"},"institutions":[{"id":"https://openalex.org/I2802476451","display_name":"Wellcome Sanger Institute","ror":"https://ror.org/05cy4wa09","country_code":"GB","type":"nonprofit","lineage":["https://openalex.org/I2802476451","https://openalex.org/I87048295"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Maili Raven-Adams","raw_affiliation_strings":["Global Alliance for Genomics and Health, Wellcome Sanger Institute, Hinxton, UK"],"affiliations":[{"raw_affiliation_string":"Global Alliance for Genomics and Health, Wellcome Sanger Institute, Hinxton, UK","institution_ids":["https://openalex.org/I2802476451"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5076685480","display_name":"Davide Zaccagnini","orcid":null},"institutions":[{"id":"https://openalex.org/I4210128624","display_name":"Lynkeus (Italy)","ror":"https://ror.org/03k8cn029","country_code":"IT","type":"company","lineage":["https://openalex.org/I4210128624"]}],"countries":["IT"],"is_corresponding":false,"raw_author_name":"Davide Zaccagnini","raw_affiliation_strings":["Lynkeus, Rome, Italy"],"affiliations":[{"raw_affiliation_string":"Lynkeus, Rome, Italy","institution_ids":["https://openalex.org/I4210128624"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5013672213","display_name":"Bartha Maria Knoppers","orcid":"https://orcid.org/0000-0001-7004-2722"},"institutions":[{"id":"https://openalex.org/I5023651","display_name":"McGill University","ror":"https://ror.org/01pxwe438","country_code":"CA","type":"education","lineage":["https://openalex.org/I5023651"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"Bartha M. Knoppers","raw_affiliation_strings":["Human Genetics, McGill University Faculty of Medicine and Health Sciences, Montreal, Canada"],"affiliations":[{"raw_affiliation_string":"Human Genetics, McGill University Faculty of Medicine and Health Sciences, Montreal, Canada","institution_ids":["https://openalex.org/I5023651"]}]}],"institutions":[],"countries_distinct_count":3,"institutions_distinct_count":4,"corresponding_author_ids":["https://openalex.org/A5024587035"],"corresponding_institution_ids":["https://openalex.org/I5023651"],"apc_list":{"value":800,"currency":"USD","value_usd":800},"apc_paid":{"value":800,"currency":"USD","value_usd":800},"fwci":2.8939,"has_fulltext":false,"cited_by_count":10,"citation_normalized_percentile":{"value":0.90373118,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":96,"max":99},"biblio":{"volume":"10","issue":"1","first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9977999925613403,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9977999925613403,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11986","display_name":"Scientific Computing and Data Management","score":0.9876000285148621,"subfield":{"id":"https://openalex.org/subfields/1802","display_name":"Information Systems and Management"},"field":{"id":"https://openalex.org/fields/18","display_name":"Decision Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11636","display_name":"Artificial Intelligence in Healthcare and Education","score":0.9767000079154968,"subfield":{"id":"https://openalex.org/subfields/2718","display_name":"Health Informatics"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/stewardship","display_name":"Stewardship (theology)","score":0.6143026947975159},{"id":"https://openalex.org/keywords/interoperability","display_name":"Interoperability","score":0.5727022290229797},{"id":"https://openalex.org/keywords/data-governance","display_name":"Data governance","score":0.4928164780139923},{"id":"https://openalex.org/keywords/compromise","display_name":"Compromise","score":0.4910547733306885},{"id":"https://openalex.org/keywords/normative","display_name":"Normative","score":0.4750354588031769},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.45920851826667786},{"id":"https://openalex.org/keywords/data-exchange","display_name":"Data exchange","score":0.44887733459472656},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.43266189098358154},{"id":"https://openalex.org/keywords/scale","display_name":"Scale (ratio)","score":0.43006834387779236},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.4210684299468994},{"id":"https://openalex.org/keywords/business","display_name":"Business","score":0.28346091508865356},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.2165449559688568},{"id":"https://openalex.org/keywords/data-quality","display_name":"Data quality","score":0.17002269625663757},{"id":"https://openalex.org/keywords/law","display_name":"Law","score":0.13004353642463684},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.12808027863502502}],"concepts":[{"id":"https://openalex.org/C2777950569","wikidata":"https://www.wikidata.org/wiki/Q17021836","display_name":"Stewardship (theology)","level":3,"score":0.6143026947975159},{"id":"https://openalex.org/C20136886","wikidata":"https://www.wikidata.org/wiki/Q749647","display_name":"Interoperability","level":2,"score":0.5727022290229797},{"id":"https://openalex.org/C196879817","wikidata":"https://www.wikidata.org/wiki/Q872685","display_name":"Data governance","level":4,"score":0.4928164780139923},{"id":"https://openalex.org/C46355384","wikidata":"https://www.wikidata.org/wiki/Q726686","display_name":"Compromise","level":2,"score":0.4910547733306885},{"id":"https://openalex.org/C44725695","wikidata":"https://www.wikidata.org/wiki/Q288156","display_name":"Normative","level":2,"score":0.4750354588031769},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.45920851826667786},{"id":"https://openalex.org/C15845906","wikidata":"https://www.wikidata.org/wiki/Q1172338","display_name":"Data exchange","level":2,"score":0.44887733459472656},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.43266189098358154},{"id":"https://openalex.org/C2778755073","wikidata":"https://www.wikidata.org/wiki/Q10858537","display_name":"Scale (ratio)","level":2,"score":0.43006834387779236},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.4210684299468994},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.28346091508865356},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.2165449559688568},{"id":"https://openalex.org/C24756922","wikidata":"https://www.wikidata.org/wiki/Q1757694","display_name":"Data quality","level":3,"score":0.17002269625663757},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.13004353642463684},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.12808027863502502},{"id":"https://openalex.org/C176217482","wikidata":"https://www.wikidata.org/wiki/Q860554","display_name":"Metric (unit)","level":2,"score":0.0},{"id":"https://openalex.org/C162853370","wikidata":"https://www.wikidata.org/wiki/Q39809","display_name":"Marketing","level":1,"score":0.0},{"id":"https://openalex.org/C94625758","wikidata":"https://www.wikidata.org/wiki/Q7163","display_name":"Politics","level":2,"score":0.0},{"id":"https://openalex.org/C62520636","wikidata":"https://www.wikidata.org/wiki/Q944","display_name":"Quantum mechanics","level":1,"score":0.0},{"id":"https://openalex.org/C121332964","wikidata":"https://www.wikidata.org/wiki/Q413","display_name":"Physics","level":0,"score":0.0}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.1177/20539517231163174","is_oa":true,"landing_page_url":"https://doi.org/10.1177/20539517231163174","pdf_url":"https://journals.sagepub.com/doi/pdf/10.1177/20539517231163174","source":{"id":"https://openalex.org/S2736409588","display_name":"Big Data & Society","issn_l":"2053-9517","issn":["2053-9517"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320017","host_organization_name":"SAGE Publishing","host_organization_lineage":["https://openalex.org/P4310320017"],"host_organization_lineage_names":["SAGE Publishing"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Big Data & Society","raw_type":"journal-article"},{"id":"pmh:oai:doaj.org/article:975804e3ba654781a14ec7708a9326c7","is_oa":true,"landing_page_url":"https://doaj.org/article/975804e3ba654781a14ec7708a9326c7","pdf_url":null,"source":{"id":"https://openalex.org/S112646816","display_name":"SHILAP Revista de lepidopterolog\u00eda","issn_l":"0300-5267","issn":["0300-5267","2340-4078"],"is_oa":true,"is_in_doaj":true,"is_core":false,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Big Data & Society, Vol 10 (2023)","raw_type":"article"}],"best_oa_location":{"id":"doi:10.1177/20539517231163174","is_oa":true,"landing_page_url":"https://doi.org/10.1177/20539517231163174","pdf_url":"https://journals.sagepub.com/doi/pdf/10.1177/20539517231163174","source":{"id":"https://openalex.org/S2736409588","display_name":"Big Data & Society","issn_l":"2053-9517","issn":["2053-9517"],"is_oa":true,"is_in_doaj":true,"is_core":true,"host_organization":"https://openalex.org/P4310320017","host_organization_name":"SAGE Publishing","host_organization_lineage":["https://openalex.org/P4310320017"],"host_organization_lineage_names":["SAGE Publishing"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Big Data & Society","raw_type":"journal-article"},"sustainable_development_goals":[],"awards":[{"id":"https://openalex.org/G1945207870","display_name":null,"funder_award_id":"16033","funder_id":"https://openalex.org/F4320334506","funder_display_name":"Canadian Institutes of Health Research"},{"id":"https://openalex.org/G4343886405","display_name":null,"funder_award_id":"825903","funder_id":"https://openalex.org/F4320320300","funder_display_name":"European Commission"},{"id":"https://openalex.org/G5101412932","display_name":null,"funder_award_id":"278144","funder_id":"https://openalex.org/F4320334618","funder_display_name":"Fonds de Recherche du Qu\u00e9bec - Sant\u00e9"}],"funders":[{"id":"https://openalex.org/F4320320300","display_name":"European Commission","ror":"https://ror.org/00k4n6c32"},{"id":"https://openalex.org/F4320334506","display_name":"Canadian Institutes of Health Research","ror":"https://ror.org/01gavpb45"},{"id":"https://openalex.org/F4320334618","display_name":"Fonds de Recherche du Qu\u00e9bec - Sant\u00e9","ror":"https://ror.org/02eqrsj93"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4366122282.pdf","grobid_xml":"https://content.openalex.org/works/W4366122282.grobid-xml"},"referenced_works_count":27,"referenced_works":["https://openalex.org/W2118366361","https://openalex.org/W2266614975","https://openalex.org/W2347080879","https://openalex.org/W2414507368","https://openalex.org/W2479683044","https://openalex.org/W2484834406","https://openalex.org/W2553822231","https://openalex.org/W2764573087","https://openalex.org/W2827643900","https://openalex.org/W2914026086","https://openalex.org/W2990212745","https://openalex.org/W3021604437","https://openalex.org/W3023726656","https://openalex.org/W3060958463","https://openalex.org/W3167437416","https://openalex.org/W3173633242","https://openalex.org/W3211646893","https://openalex.org/W3213068415","https://openalex.org/W3213210846","https://openalex.org/W3213275415","https://openalex.org/W3214176644","https://openalex.org/W4206447134","https://openalex.org/W4206499307","https://openalex.org/W4210380156","https://openalex.org/W4210703609","https://openalex.org/W4226258750","https://openalex.org/W4283379681"],"related_works":["https://openalex.org/W3109801220","https://openalex.org/W2135525915","https://openalex.org/W2257285084","https://openalex.org/W4240277007","https://openalex.org/W2102204347","https://openalex.org/W2787869728","https://openalex.org/W1551052225","https://openalex.org/W3104269738","https://openalex.org/W1574374328","https://openalex.org/W4286376030"],"abstract_inverted_index":{"Health":[0],"organisations":[1,60,106,235],"use":[2],"numerous":[3,105],"different":[4,216],"mechanisms":[5,35],"to":[6,10,22,40,62,75,141,172,199,215,231],"collect":[7],"biomedical":[8,135,147,181,196],"data,":[9],"determine":[11],"the":[12,24,29,83,121,174,208,223],"applicable":[13,214,230],"ethical,":[14,209],"legal":[15,225],"and":[16,21,34,42,51,68,81,95,123,134,170,176,211,226,234],"institutional":[17,212],"conditions":[18],"of":[19,86,93,127,146,163,178,207],"use,":[20],"reutilise":[23],"data":[25,56,66,72,131,148,183,197,238],"in":[26,89,114,151,180,191,204],"accordance":[27],"with":[28,184],"relevant":[30],"rules.":[31],"These":[32],"methods":[33],"differ":[36],"from":[37],"one":[38,240],"organisation":[39],"another,":[41],"involve":[43],"considerable":[44],"specialised":[45],"human":[46,186],"labour,":[47],"including":[48],"record-keeping":[49],"functions":[50,164],"decision-making":[52],"committees.":[53],"In":[54],"reutilising":[55],"at":[57,102,202],"scale,":[58,203],"however,":[59],"struggle":[61],"meet":[63],"demands":[64],"for":[65,69],"interoperability":[67],"rapid":[70],"inter-organisational":[71],"exchange":[73,149,198],"due":[74],"reliance":[76],"on":[77,82],"legacy":[78],"paper-based":[79],"records":[80],"human-initiated":[84],"administration":[85,177],"accompanying":[87],"permissions":[88,179],"data.":[90],"The":[91,138],"adoption":[92],"permissions-recording,":[94],"permissions-administration":[96],"tools":[97,139],"that":[98,117,165,236],"can":[99],"be":[100,112,168,200],"implemented":[101,113],"scale":[103],"across":[104],"is":[107,229],"imperative.":[108],"Further,":[109],"these":[110],"must":[111,166],"a":[115,143,160],"manner":[116,193],"does":[118],"not":[119],"compromise":[120],"nuanced":[122],"contextual":[124],"adjudicative":[125],"processes":[126],"research":[128,136,182],"ethics":[129],"committees,":[130,133],"access":[132],"organisations.":[137],"required":[140],"implement":[142],"streamlined":[144],"system":[145],"have":[150],"great":[152],"part":[153],"been":[154],"developed.":[155],"Indeed,":[156],"there":[157],"remains":[158],"but":[159],"small":[161],"core":[162],"further":[167],"standardised":[169],"automated":[171],"enable":[173,195],"recording":[175],"minimal":[185],"effort.":[187],"Recording":[188],"ethical":[189],"provenance":[190],"this":[192],"would":[194],"performed":[201],"full":[205],"respect":[206],"legal,":[210],"rules":[213],"datasets.":[217],"This":[218],"despite":[219],"foundational":[220],"differences":[221],"between":[222,239],"distinct":[224,232],"normative":[227],"frameworks":[228],"communities":[233],"share":[237],"another.":[241]},"counts_by_year":[{"year":2026,"cited_by_count":2},{"year":2025,"cited_by_count":3},{"year":2024,"cited_by_count":5}],"updated_date":"2026-03-31T07:56:22.981413","created_date":"2025-10-10T00:00:00"}