{"id":"https://openalex.org/W2925032854","doi":"https://doi.org/10.1177/1460458219833117","title":"Communal data work: Data sharing and re-use in clinical genetics","display_name":"Communal data work: Data sharing and re-use in clinical genetics","publication_year":2019,"publication_date":"2019-03-19","ids":{"openalex":"https://openalex.org/W2925032854","doi":"https://doi.org/10.1177/1460458219833117","mag":"2925032854","pmid":"https://pubmed.ncbi.nlm.nih.gov/30887878"},"language":"en","primary_location":{"id":"doi:10.1177/1460458219833117","is_oa":true,"landing_page_url":"https://doi.org/10.1177/1460458219833117","pdf_url":"https://journals.sagepub.com/doi/pdf/10.1177/1460458219833117","source":{"id":"https://openalex.org/S201800618","display_name":"Health Informatics Journal","issn_l":"1460-4582","issn":["1460-4582","1741-2811"],"is_oa":false,"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":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Health Informatics Journal","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","doaj","pubmed"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"https://journals.sagepub.com/doi/pdf/10.1177/1460458219833117","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5016480732","display_name":"Polyxeni Vassilakopoulou","orcid":"https://orcid.org/0000-0002-5947-4070"},"institutions":[{"id":"https://openalex.org/I200650556","display_name":"University of Agder","ror":"https://ror.org/03x297z98","country_code":"NO","type":"education","lineage":["https://openalex.org/I200650556"]}],"countries":["NO"],"is_corresponding":true,"raw_author_name":"Polyxeni Vassilakopoulou","raw_affiliation_strings":["University of Agder, Norway"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Agder, Norway","institution_ids":["https://openalex.org/I200650556"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5078871043","display_name":"Margunn Aanestad","orcid":"https://orcid.org/0000-0003-3731-4241"},"institutions":[{"id":"https://openalex.org/I184942183","display_name":"University of Oslo","ror":"https://ror.org/01xtthb56","country_code":"NO","type":"education","lineage":["https://openalex.org/I184942183"]}],"countries":["NO"],"is_corresponding":false,"raw_author_name":"Margunn Aanestad","raw_affiliation_strings":["University of Oslo, Norway"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Oslo, Norway","institution_ids":["https://openalex.org/I184942183"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":["https://openalex.org/A5016480732"],"corresponding_institution_ids":["https://openalex.org/I200650556"],"apc_list":{"value":1500,"currency":"USD","value_usd":1500},"apc_paid":null,"fwci":0.3842,"has_fulltext":false,"cited_by_count":13,"citation_normalized_percentile":{"value":0.68533387,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":99},"biblio":{"volume":"25","issue":"3","first_page":"511","last_page":"525"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11937","display_name":"Research Data Management Practices","score":0.9983000159263611,"subfield":{"id":"https://openalex.org/subfields/1710","display_name":"Information Systems"},"field":{"id":"https://openalex.org/fields/17","display_name":"Computer Science"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},"topics":[{"id":"https://openalex.org/T11937","display_name":"Research Data Management Practices","score":0.9983000159263611,"subfield":{"id":"https://openalex.org/subfields/1710","display_name":"Information Systems"},"field":{"id":"https://openalex.org/fields/17","display_name":"Computer Science"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},{"id":"https://openalex.org/T11719","display_name":"Data Quality and Management","score":0.9957000017166138,"subfield":{"id":"https://openalex.org/subfields/1803","display_name":"Management Science and Operations Research"},"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/T11986","display_name":"Scientific Computing and Data Management","score":0.9908000230789185,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/interoperability","display_name":"Interoperability","score":0.6728922128677368},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.6001402735710144},{"id":"https://openalex.org/keywords/informatics","display_name":"Informatics","score":0.5558218359947205},{"id":"https://openalex.org/keywords/relevance","display_name":"Relevance (law)","score":0.5473613142967224},{"id":"https://openalex.org/keywords/genetic-data","display_name":"Genetic data","score":0.5459009408950806},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.541107177734375},{"id":"https://openalex.org/keywords/context","display_name":"Context (archaeology)","score":0.53741455078125},{"id":"https://openalex.org/keywords/data-sharing","display_name":"Data sharing","score":0.5239979028701782},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.46423736214637756},{"id":"https://openalex.org/keywords/health-informatics","display_name":"Health informatics","score":0.4202459156513214},{"id":"https://openalex.org/keywords/empirical-research","display_name":"Empirical research","score":0.41311803460121155},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.20875206589698792},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.19002416729927063},{"id":"https://openalex.org/keywords/geography","display_name":"Geography","score":0.14279711246490479},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.14222678542137146},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.12869396805763245},{"id":"https://openalex.org/keywords/population","display_name":"Population","score":0.11299446225166321}],"concepts":[{"id":"https://openalex.org/C20136886","wikidata":"https://www.wikidata.org/wiki/Q749647","display_name":"Interoperability","level":2,"score":0.6728922128677368},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.6001402735710144},{"id":"https://openalex.org/C191630685","wikidata":"https://www.wikidata.org/wiki/Q4027615","display_name":"Informatics","level":2,"score":0.5558218359947205},{"id":"https://openalex.org/C158154518","wikidata":"https://www.wikidata.org/wiki/Q7310970","display_name":"Relevance (law)","level":2,"score":0.5473613142967224},{"id":"https://openalex.org/C2993807623","wikidata":"https://www.wikidata.org/wiki/Q7020","display_name":"Genetic data","level":3,"score":0.5459009408950806},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.541107177734375},{"id":"https://openalex.org/C2779343474","wikidata":"https://www.wikidata.org/wiki/Q3109175","display_name":"Context (archaeology)","level":2,"score":0.53741455078125},{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.5239979028701782},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.46423736214637756},{"id":"https://openalex.org/C145642194","wikidata":"https://www.wikidata.org/wiki/Q870895","display_name":"Health informatics","level":3,"score":0.4202459156513214},{"id":"https://openalex.org/C120936955","wikidata":"https://www.wikidata.org/wiki/Q2155640","display_name":"Empirical research","level":2,"score":0.41311803460121155},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.20875206589698792},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.19002416729927063},{"id":"https://openalex.org/C205649164","wikidata":"https://www.wikidata.org/wiki/Q1071","display_name":"Geography","level":0,"score":0.14279711246490479},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.14222678542137146},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.12869396805763245},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.11299446225166321},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0},{"id":"https://openalex.org/C166957645","wikidata":"https://www.wikidata.org/wiki/Q23498","display_name":"Archaeology","level":1,"score":0.0},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.0},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.0},{"id":"https://openalex.org/C138885662","wikidata":"https://www.wikidata.org/wiki/Q5891","display_name":"Philosophy","level":0,"score":0.0},{"id":"https://openalex.org/C111472728","wikidata":"https://www.wikidata.org/wiki/Q9471","display_name":"Epistemology","level":1,"score":0.0},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D003299","descriptor_name":"Cooperative Behavior","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003299","descriptor_name":"Cooperative Behavior","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003299","descriptor_name":"Cooperative Behavior","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005820","descriptor_name":"Genetic Testing","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005820","descriptor_name":"Genetic Testing","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005820","descriptor_name":"Genetic Testing","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005823","descriptor_name":"Genetics","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D005823","descriptor_name":"Genetics","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D005823","descriptor_name":"Genetics","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012984","descriptor_name":"Software","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012984","descriptor_name":"Software","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012984","descriptor_name":"Software","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016208","descriptor_name":"Databases, Factual","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D016208","descriptor_name":"Databases, Factual","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D016208","descriptor_name":"Databases, Factual","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D017422","descriptor_name":"Sequence Analysis, DNA","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017422","descriptor_name":"Sequence Analysis, DNA","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017422","descriptor_name":"Sequence Analysis, DNA","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D033181","descriptor_name":"Information Dissemination","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D063025","descriptor_name":"Health Information Management","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D063025","descriptor_name":"Health Information Management","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D063025","descriptor_name":"Health Information Management","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":4,"locations":[{"id":"doi:10.1177/1460458219833117","is_oa":true,"landing_page_url":"https://doi.org/10.1177/1460458219833117","pdf_url":"https://journals.sagepub.com/doi/pdf/10.1177/1460458219833117","source":{"id":"https://openalex.org/S201800618","display_name":"Health Informatics Journal","issn_l":"1460-4582","issn":["1460-4582","1741-2811"],"is_oa":false,"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":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Health Informatics Journal","raw_type":"journal-article"},{"id":"pmid:30887878","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/30887878","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Health informatics journal","raw_type":null},{"id":"pmh:oai:uia.brage.unit.no:11250/2649316","is_oa":true,"landing_page_url":"https://hdl.handle.net/11250/2649316","pdf_url":null,"source":{"id":"https://openalex.org/S4306401716","display_name":"Duo Research Archive (University of Oslo)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I184942183","host_organization_name":"University of Oslo","host_organization_lineage":["https://openalex.org/I184942183"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc-nd","license_id":"https://openalex.org/licenses/cc-by-nc-nd","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"511-525","raw_type":"info:eu-repo/semantics/article"},{"id":"pmh:oai:www.duo.uio.no:10852/75136","is_oa":true,"landing_page_url":"http://urn.nb.no/URN:NBN:no-78224","pdf_url":null,"source":{"id":"https://openalex.org/S4306401716","display_name":"Duo Research Archive (University of Oslo)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I184942183","host_organization_name":"University of Oslo","host_organization_lineage":["https://openalex.org/I184942183"],"host_organization_lineage_names":[],"type":"repository"},"license":"other-oa","license_id":"https://openalex.org/licenses/other-oa","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"1460-4582","raw_type":"info:eu-repo/semantics/article"}],"best_oa_location":{"id":"doi:10.1177/1460458219833117","is_oa":true,"landing_page_url":"https://doi.org/10.1177/1460458219833117","pdf_url":"https://journals.sagepub.com/doi/pdf/10.1177/1460458219833117","source":{"id":"https://openalex.org/S201800618","display_name":"Health Informatics Journal","issn_l":"1460-4582","issn":["1460-4582","1741-2811"],"is_oa":false,"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":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Health Informatics Journal","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.6299999952316284,"display_name":"Industry, innovation and infrastructure","id":"https://metadata.un.org/sdg/9"}],"awards":[{"id":"https://openalex.org/G2943570523","display_name":null,"funder_award_id":"237766","funder_id":"https://openalex.org/F4320323299","funder_display_name":"Norges Forskningsr\u00e5d"},{"id":"https://openalex.org/G7732250149","display_name":null,"funder_award_id":"210622","funder_id":"https://openalex.org/F4320323299","funder_display_name":"Norges Forskningsr\u00e5d"}],"funders":[{"id":"https://openalex.org/F4320323299","display_name":"Norges Forskningsr\u00e5d","ror":"https://ror.org/00epmv149"}],"has_content":{"grobid_xml":false,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W2925032854.pdf"},"referenced_works_count":44,"referenced_works":["https://openalex.org/W253582415","https://openalex.org/W393210043","https://openalex.org/W584790758","https://openalex.org/W1965177842","https://openalex.org/W1966474073","https://openalex.org/W1967841763","https://openalex.org/W1971348553","https://openalex.org/W1983377598","https://openalex.org/W1996635873","https://openalex.org/W2007027431","https://openalex.org/W2007379715","https://openalex.org/W2014977309","https://openalex.org/W2032382473","https://openalex.org/W2037458235","https://openalex.org/W2067947995","https://openalex.org/W2071446951","https://openalex.org/W2073568224","https://openalex.org/W2093233459","https://openalex.org/W2098633524","https://openalex.org/W2120297847","https://openalex.org/W2155354890","https://openalex.org/W2159533605","https://openalex.org/W2163715482","https://openalex.org/W2164970073","https://openalex.org/W2165067028","https://openalex.org/W2165227514","https://openalex.org/W2168610667","https://openalex.org/W2179444707","https://openalex.org/W2262972580","https://openalex.org/W2301163450","https://openalex.org/W2302501749","https://openalex.org/W2498653976","https://openalex.org/W2565499657","https://openalex.org/W2753423557","https://openalex.org/W2770611093","https://openalex.org/W2773787581","https://openalex.org/W2791995318","https://openalex.org/W2793373078","https://openalex.org/W2914976286","https://openalex.org/W3104849124","https://openalex.org/W3123732438","https://openalex.org/W4232525524","https://openalex.org/W4243366766","https://openalex.org/W4256165433"],"related_works":["https://openalex.org/W2397677514","https://openalex.org/W2914293784","https://openalex.org/W2407382301","https://openalex.org/W1495820741","https://openalex.org/W4323056170","https://openalex.org/W2126732312","https://openalex.org/W2401910071","https://openalex.org/W2189429352","https://openalex.org/W4302329558","https://openalex.org/W1971571384"],"abstract_inverted_index":{"In":[0],"this":[1],"article,":[2],"we":[3,35],"examine":[4],"work":[5],"with":[6,81],"communal":[7],"data":[8,31,38,89],"in":[9,40],"the":[10,26,45,67],"context":[11],"of":[12,28,72],"clinical":[13],"genetic":[14,33],"testing.":[15],"Drawing":[16],"from":[17,25],"prior":[18],"research":[19,22,52,77],"on":[20,32],"digital":[21],"infrastructures":[23],"and":[24,49,65,70],"analysis":[27],"our":[29],"empirical":[30],"testing,":[34],"describe":[36],"how":[37],"generated":[39],"laboratories":[41],"distributed":[42],"all":[43],"over":[44],"world":[46],"are":[47],"shared":[48],"re-used.":[50],"Our":[51],"findings":[53],"point":[54],"to":[55,61,76],"six":[56],"different":[57],"human-driven":[58,86],"activities":[59,87],"related":[60],"expanding,":[62],"disambiguating,":[63],"sanitizing":[64],"assessing":[66],"relevance,":[68],"validity":[69],"combinability":[71],"data.":[73],"We":[74],"contribute":[75],"within":[78],"Health":[79],"Informatics":[80],"a":[82],"framework":[83],"that":[84],"foregrounds":[85],"for":[88],"interoperability.":[90]},"counts_by_year":[{"year":2025,"cited_by_count":2},{"year":2024,"cited_by_count":7},{"year":2023,"cited_by_count":3},{"year":2019,"cited_by_count":1}],"updated_date":"2026-07-23T08:03:31.855105","created_date":"2025-10-10T00:00:00"}