{"id":"https://openalex.org/W2159016607","doi":null,"title":"Legal aspects of genetic databases for international biomedical research: the example of the International Cancer Genome Consortium (ICGC).","display_name":"Legal aspects of genetic databases for international biomedical research: the example of the International Cancer Genome Consortium (ICGC).","publication_year":2012,"publication_date":"2012-07-01","ids":{"openalex":"https://openalex.org/W2159016607","mag":"2159016607","pmid":"https://pubmed.ncbi.nlm.nih.gov/23520913"},"language":"en","primary_location":{"id":"pmid:23520913","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/23520913","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,"listed_in":[],"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":"Revista de derecho y genoma humano = Law and the human genome review","raw_type":"Journal Article"},"volume":null,"type":"article","indexed_in":["pubmed"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5076118890","display_name":"Carlos Mar\u00eda Romeo-Casabona","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210126679","display_name":"Institut Cartogr\u00e0fic i Geol\u00f2gic de Catalunya","ror":"https://ror.org/03d2ezn18","country_code":"ES","type":"other","lineage":["https://openalex.org/I4210126679"]}],"countries":["ES"],"is_corresponding":false,"raw_author_name":"Carlos Romeo-Casabona","raw_affiliation_strings":["ICGC. carlosmaria.romeo@ehu.es","ICGC"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"ICGC. carlosmaria.romeo@ehu.es","institution_ids":["https://openalex.org/I4210126679"]},{"raw_affiliation_string":"ICGC","institution_ids":["https://openalex.org/I4210126679"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5114260642","display_name":"Pilar Nicol\u00e1s","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Pilar Nicol\u00e1s","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5013672213","display_name":"Bartha Maria Knoppers","orcid":"https://orcid.org/0000-0001-7004-2722","observed_orcids":["https://orcid.org/0000-0001-7004-2722"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Bartha Maria Knoppers","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5018546125","display_name":"Yann Joly","orcid":"https://orcid.org/0000-0002-8775-2322","observed_orcids":["https://orcid.org/0000-0002-8775-2322"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Yann Joly","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":null,"display_name":"Susan E Wallace","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Susan E Wallace","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5075565616","display_name":"Drc Chalmers","orcid":"https://orcid.org/0000-0002-7925-8818","observed_orcids":["https://orcid.org/0000-0002-7925-8818"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Don Chalmers","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5078709577","display_name":"Stephanie O. M. Dyke","orcid":"https://orcid.org/0000-0001-5756-3822","observed_orcids":["https://orcid.org/0000-0001-5756-3822"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Stephanie Dyke","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5088941615","display_name":"Karen L. Kennedy","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Karen Kennedy","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5111731019","display_name":"Antonio Troncoso","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Antonio Troncoso","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5034069451","display_name":"Terry Sheung-Hung Kaan","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Terry Kaan","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5040936980","display_name":"Emmanuelle Rial\u2010Sebbag","orcid":"https://orcid.org/0009-0005-3818-0101","observed_orcids":["https://orcid.org/0009-0005-3818-0101"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Emmanuelle Rial-Sebbag","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.3086,"has_fulltext":false,"cited_by_count":4,"citation_normalized_percentile":{"value":0.68375165,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":95},"biblio":{"volume":null,"issue":"37","first_page":"15","last_page":"34"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9897000193595886,"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":0.9897000193595886,"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/T11937","display_name":"Research Data Management Practices","score":0.0027000000700354576,"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/T13275","display_name":"Medical and Health Sciences Research","score":0.0020000000949949026,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/genetic-databases","display_name":"genetic databases","score":0.9359999895095825},{"id":"https://openalex.org/keywords/international-cancer-genome-consortium","display_name":"ICGC","score":0.9539999961853027},{"id":"https://openalex.org/keywords/international-data-sharing","display_name":"international data sharing","score":0.6159999966621399},{"id":"https://openalex.org/keywords/personal-data-protection","display_name":"personal data protection","score":0.8009999990463257},{"id":"https://openalex.org/keywords/research-ethics","display_name":"research ethics","score":0.7139999866485596},{"id":"https://openalex.org/keywords/protection-of-research-participants","display_name":"research participant protection","score":0.5659999847412109},{"id":"https://openalex.org/keywords/international-research-collaboration","display_name":"international research collaboration","score":0.6539999842643738},{"id":"https://openalex.org/keywords/genomic-data-privacy","display_name":"genomic data privacy","score":0.4269999861717224}],"concepts":[{"id":"https://openalex.org/C2779965156","wikidata":"https://www.wikidata.org/wiki/Q5227350","display_name":"Data sharing","level":3,"score":0.5786788463592529},{"id":"https://openalex.org/C2780771206","wikidata":"https://www.wikidata.org/wiki/Q3271761","display_name":"Safeguard","level":2,"score":0.4954761266708374},{"id":"https://openalex.org/C2986663376","wikidata":"https://www.wikidata.org/wiki/Q9465","display_name":"Ethical issues","level":2,"score":0.4351341724395752},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.4284381866455078},{"id":"https://openalex.org/C144133560","wikidata":"https://www.wikidata.org/wiki/Q4830453","display_name":"Business","level":0,"score":0.3844895660877228},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.34246331453323364},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.3379053771495819},{"id":"https://openalex.org/C55587333","wikidata":"https://www.wikidata.org/wiki/Q1133029","display_name":"Engineering ethics","level":1,"score":0.31178876757621765},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.2520104646682739},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2146909534931183},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.15119072794914246},{"id":"https://openalex.org/C127413603","wikidata":"https://www.wikidata.org/wiki/Q11023","display_name":"Engineering","level":0,"score":0.12964916229248047},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.07448369264602661},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D007390","descriptor_name":"International Agencies","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D030541","descriptor_name":"Databases, Genetic","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D030541","descriptor_name":"Databases, Genetic","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D035843","descriptor_name":"Biomedical Research","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D038622","descriptor_name":"Internationality","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":4,"locations":[{"id":"pmid:23520913","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/23520913","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,"listed_in":[],"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":"Revista de derecho y genoma humano = Law and the human genome review","raw_type":"Journal Article"},{"id":"pmh:oai:ecite.utas.edu.au:84025","doi":null,"is_oa":false,"landing_page_url":"http://ecite.utas.edu.au/84025","pdf_url":null,"source":{"id":"https://openalex.org/S4306401569","display_name":"eCite Digital Repository (University of Tasmania)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I129801699","host_organization_name":"University of Tasmania","host_organization_lineage":["https://openalex.org/I129801699"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"","raw_type":"Refereed Article"},{"id":"pmh:oai:figshare.com:article/22899137","doi":null,"is_oa":false,"landing_page_url":"https://figshare.com/articles/journal_contribution/Legal_aspects_of_genetic_databases_for_international_biomedical_research_the_example_of_the_International_Cancer_Genome_Consortium_ICGC_/22899137","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"Text"},{"id":"mag:2159016607","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/23520913","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,"listed_in":[],"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":null,"is_accepted":false,"is_published":false,"raw_source_name":"PubMed","raw_type":null}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/17","display_name":"Partnerships for the goals","score":0.75},{"id":"https://metadata.un.org/sdg/16","display_name":"Peace, justice, and strong institutions","score":0.6601999998092651},{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.428600013256073}],"sustainable_development_goals_aurora":[{"id":"https://metadata.un.org/sdg/17","display_name":"Partnerships for the goals","score":0.550000011920929}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W3005189887","https://openalex.org/W2792824841","https://openalex.org/W2997705099","https://openalex.org/W2618206870","https://openalex.org/W2989896501","https://openalex.org/W2018248178","https://openalex.org/W7220600467","https://openalex.org/W2162154158","https://openalex.org/W7216688140","https://openalex.org/W2117019480"],"abstract_inverted_index":{"There":[0],"is":[1,31],"a":[2],"noticeable":[3],"lack":[4],"of":[5,48,65,79,90],"international":[6,46],"regulation":[7],"on":[8],"personal":[9],"data":[10,49,80],"exchange":[11],"and":[12,34,40,50,54,58,69,81],"management":[13],"in":[14,20],"research.":[15,94],"This":[16],"article":[17],"sheds":[18],"light":[19],"this":[21,88],"area":[22],"by":[23,44],"describing":[24],"how":[25],"the":[26,38,45,63,66,77],"International":[27],"Cancer":[28],"Genome":[29],"Consortium":[30],"developing":[32],"policies":[33,53],"procedures":[35,55],"to":[36,61,75,83],"address":[37],"ethical":[39],"legal":[41],"issues":[42],"raised":[43],"transfer":[47],"results.":[51],"These":[52],"aim,":[56],"first":[57],"most":[59],"importantly,":[60],"safeguard":[62],"interests":[64],"research":[67],"participants":[68],"other":[70],"involved":[71],"stakeholders":[72],"and,":[73],"secondly,":[74],"facilitate":[76],"sharing":[78],"results":[82],"realize":[84],"greater":[85],"benefits":[86],"from":[87],"kind":[89],"internationally":[91],"collaborative":[92],"genetic":[93]},"counts_by_year":[{"year":2023,"cited_by_count":1},{"year":2021,"cited_by_count":2},{"year":2014,"cited_by_count":1}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2016-06-24T00:00:00"}
