{"id":"https://openalex.org/W2133751849","doi":"https://doi.org/10.1136/amiajnl-2012-001009","title":"Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador","display_name":"Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador","publication_year":2012,"publication_date":"2012-08-03","ids":{"openalex":"https://openalex.org/W2133751849","doi":"https://doi.org/10.1136/amiajnl-2012-001009","mag":"2133751849","pmid":"https://pubmed.ncbi.nlm.nih.gov/22859644"},"language":"en","primary_location":{"id":"doi:10.1136/amiajnl-2012-001009","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2012-001009","pdf_url":"https://academic.oup.com/jamia/article-pdf/20/1/38/9517901/20-1-38.pdf","source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://academic.oup.com/jamia/article-pdf/20/1/38/9517901/20-1-38.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5054270094","display_name":"Patricia Kosseim","orcid":null},"institutions":[{"id":"https://openalex.org/I2802549962","display_name":"Privy Council Office","ror":"https://ror.org/05pbbmz23","country_code":"CA","type":"government","lineage":["https://openalex.org/I2802549962"]},{"id":"https://openalex.org/I4210093980","display_name":"Privacy Analytics (Canada)","ror":"https://ror.org/00q06r288","country_code":"CA","type":"company","lineage":["https://openalex.org/I4210093980"]},{"id":"https://openalex.org/I4210099377","display_name":"Office of the Privacy Commissioner of Canada","ror":"https://ror.org/0164vvh82","country_code":"CA","type":"government","lineage":["https://openalex.org/I4210099377"]}],"countries":["CA"],"is_corresponding":true,"raw_author_name":"P. Kosseim","raw_affiliation_strings":["Office of the Privacy Commissioner of Canada, Ottawa, Ontario, Canada. patricia.kosseim@priv.gc.ca","Office of the Privacy Commissioner of Canada, Ottawa, Ontario, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Office of the Privacy Commissioner of Canada, Ottawa, Ontario, Canada. patricia.kosseim@priv.gc.ca","institution_ids":["https://openalex.org/I2802549962","https://openalex.org/I4210093980"]},{"raw_affiliation_string":"Office of the Privacy Commissioner of Canada, Ottawa, Ontario, Canada","institution_ids":["https://openalex.org/I4210099377"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5070606111","display_name":"Daryl Pullman","orcid":"https://orcid.org/0000-0001-9478-9644"},"institutions":[{"id":"https://openalex.org/I130438778","display_name":"Memorial University of Newfoundland","ror":"https://ror.org/04haebc03","country_code":"CA","type":"education","lineage":["https://openalex.org/I130438778"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"D. Pullman","raw_affiliation_strings":["Faculty of Medicine, Memorial University, Newfoundland, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Faculty of Medicine, Memorial University, Newfoundland, Canada","institution_ids":["https://openalex.org/I130438778"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5098417624","display_name":"A. Perrot-Daley","orcid":null},"institutions":[{"id":"https://openalex.org/I130438778","display_name":"Memorial University of Newfoundland","ror":"https://ror.org/04haebc03","country_code":"CA","type":"education","lineage":["https://openalex.org/I130438778"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"A. Perrot-Daley","raw_affiliation_strings":["Population Therapeutics Research Group, Memorial University, Memorial University, Newfoundland, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Population Therapeutics Research Group, Memorial University, Memorial University, Newfoundland, Canada","institution_ids":["https://openalex.org/I130438778"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5038820164","display_name":"Kathy Hodgkinson","orcid":null},"institutions":[{"id":"https://openalex.org/I130438778","display_name":"Memorial University of Newfoundland","ror":"https://ror.org/04haebc03","country_code":"CA","type":"education","lineage":["https://openalex.org/I130438778"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"K. Hodgkinson","raw_affiliation_strings":["Faculty of Medicine, Memorial University, Newfoundland, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Faculty of Medicine, Memorial University, Newfoundland, Canada","institution_ids":["https://openalex.org/I130438778"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5080924367","display_name":"Catherine Street","orcid":"https://orcid.org/0000-0003-4408-7796"},"institutions":[{"id":"https://openalex.org/I130438778","display_name":"Memorial University of Newfoundland","ror":"https://ror.org/04haebc03","country_code":"CA","type":"education","lineage":["https://openalex.org/I130438778"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"C. Street","raw_affiliation_strings":["Population Therapeutics Research Group, Memorial University, Memorial University, Newfoundland, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Population Therapeutics Research Group, Memorial University, Memorial University, Newfoundland, Canada","institution_ids":["https://openalex.org/I130438778"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5065964920","display_name":"Proton Rahman","orcid":"https://orcid.org/0000-0002-4521-2029"},"institutions":[{"id":"https://openalex.org/I130438778","display_name":"Memorial University of Newfoundland","ror":"https://ror.org/04haebc03","country_code":"CA","type":"education","lineage":["https://openalex.org/I130438778"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"P. Rahman","raw_affiliation_strings":["Faculty of Medicine, Memorial University, Newfoundland, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Faculty of Medicine, Memorial University, Newfoundland, Canada","institution_ids":["https://openalex.org/I130438778"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":6,"corresponding_author_ids":["https://openalex.org/A5054270094"],"corresponding_institution_ids":["https://openalex.org/I2802549962","https://openalex.org/I4210093980","https://openalex.org/I4210099377"],"apc_list":{"value":3967,"currency":"USD","value_usd":3967},"apc_paid":{"value":3967,"currency":"USD","value_usd":3967},"fwci":0.6387,"has_fulltext":false,"cited_by_count":6,"citation_normalized_percentile":{"value":0.76801924,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":90,"max":96},"biblio":{"volume":"20","issue":"1","first_page":"38","last_page":"43"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.28769999742507935,"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":0.28769999742507935,"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/T10769","display_name":"BRCA gene mutations in cancer","score":0.17249999940395355,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T12749","display_name":"Race, Genetics, and Society","score":0.09929999709129333,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/population","display_name":"Population","score":0.504025399684906},{"id":"https://openalex.org/keywords/legitimacy","display_name":"Legitimacy","score":0.47402364015579224},{"id":"https://openalex.org/keywords/legislature","display_name":"Legislature","score":0.47244101762771606},{"id":"https://openalex.org/keywords/political-science","display_name":"Political science","score":0.45222100615501404},{"id":"https://openalex.org/keywords/legislation","display_name":"Legislation","score":0.44699373841285706},{"id":"https://openalex.org/keywords/research-ethics","display_name":"Research ethics","score":0.44672074913978577},{"id":"https://openalex.org/keywords/statute","display_name":"Statute","score":0.4395199418067932},{"id":"https://openalex.org/keywords/analytics","display_name":"Analytics","score":0.43270355463027954},{"id":"https://openalex.org/keywords/information-privacy","display_name":"Information privacy","score":0.41084054112434387},{"id":"https://openalex.org/keywords/database","display_name":"Database","score":0.3935352563858032},{"id":"https://openalex.org/keywords/internet-privacy","display_name":"Internet privacy","score":0.35982775688171387},{"id":"https://openalex.org/keywords/public-administration","display_name":"Public administration","score":0.32013511657714844},{"id":"https://openalex.org/keywords/law","display_name":"Law","score":0.31722959876060486},{"id":"https://openalex.org/keywords/politics","display_name":"Politics","score":0.2688019573688507},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.20914864540100098},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.14017638564109802},{"id":"https://openalex.org/keywords/environmental-health","display_name":"Environmental health","score":0.13384735584259033}],"concepts":[{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.504025399684906},{"id":"https://openalex.org/C46295352","wikidata":"https://www.wikidata.org/wiki/Q207982","display_name":"Legitimacy","level":3,"score":0.47402364015579224},{"id":"https://openalex.org/C83009810","wikidata":"https://www.wikidata.org/wiki/Q11204","display_name":"Legislature","level":2,"score":0.47244101762771606},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.45222100615501404},{"id":"https://openalex.org/C2777351106","wikidata":"https://www.wikidata.org/wiki/Q49371","display_name":"Legislation","level":2,"score":0.44699373841285706},{"id":"https://openalex.org/C153997805","wikidata":"https://www.wikidata.org/wiki/Q42240","display_name":"Research ethics","level":2,"score":0.44672074913978577},{"id":"https://openalex.org/C17319257","wikidata":"https://www.wikidata.org/wiki/Q21189184","display_name":"Statute","level":2,"score":0.4395199418067932},{"id":"https://openalex.org/C79158427","wikidata":"https://www.wikidata.org/wiki/Q485396","display_name":"Analytics","level":2,"score":0.43270355463027954},{"id":"https://openalex.org/C123201435","wikidata":"https://www.wikidata.org/wiki/Q456632","display_name":"Information privacy","level":2,"score":0.41084054112434387},{"id":"https://openalex.org/C77088390","wikidata":"https://www.wikidata.org/wiki/Q8513","display_name":"Database","level":1,"score":0.3935352563858032},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.35982775688171387},{"id":"https://openalex.org/C3116431","wikidata":"https://www.wikidata.org/wiki/Q31728","display_name":"Public administration","level":1,"score":0.32013511657714844},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.31722959876060486},{"id":"https://openalex.org/C94625758","wikidata":"https://www.wikidata.org/wiki/Q7163","display_name":"Politics","level":2,"score":0.2688019573688507},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.20914864540100098},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.14017638564109802},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.13384735584259033},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.0}],"mesh":[{"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":"D009523","descriptor_name":"Newfoundland and Labrador","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009523","descriptor_name":"Newfoundland and Labrador","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009523","descriptor_name":"Newfoundland and Labrador","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010375","descriptor_name":"Pedigree","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010375","descriptor_name":"Pedigree","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010375","descriptor_name":"Pedigree","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D016730","descriptor_name":"Program Development","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016730","descriptor_name":"Program Development","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D016730","descriptor_name":"Program Development","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":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"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":true},{"descriptor_ui":"D030541","descriptor_name":"Databases, Genetic","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D030541","descriptor_name":"Databases, Genetic","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D030661","descriptor_name":"Genetic Privacy","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D030661","descriptor_name":"Genetic Privacy","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D030661","descriptor_name":"Genetic Privacy","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D030661","descriptor_name":"Genetic Privacy","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D030661","descriptor_name":"Genetic Privacy","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D030661","descriptor_name":"Genetic Privacy","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D036281","descriptor_name":"Genetic 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":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000331","qualifier_name":"legislation & jurisprudence","is_major_topic":true},{"descriptor_ui":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true}],"locations_count":3,"locations":[{"id":"doi:10.1136/amiajnl-2012-001009","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2012-001009","pdf_url":"https://academic.oup.com/jamia/article-pdf/20/1/38/9517901/20-1-38.pdf","source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},{"id":"pmid:22859644","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/22859644","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":"Journal of the American Medical Informatics Association : JAMIA","raw_type":null},{"id":"pmh:oai:europepmc.org:2846804","is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3555321","pdf_url":null,"source":{"id":"https://openalex.org/S4306400806","display_name":"Europe PMC (PubMed Central)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1303153112","host_organization_name":"European Bioinformatics Institute","host_organization_lineage":["https://openalex.org/I1303153112"],"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":null,"raw_type":"Text"}],"best_oa_location":{"id":"doi:10.1136/amiajnl-2012-001009","is_oa":true,"landing_page_url":"https://doi.org/10.1136/amiajnl-2012-001009","pdf_url":"https://academic.oup.com/jamia/article-pdf/20/1/38/9517901/20-1-38.pdf","source":{"id":"https://openalex.org/S129839026","display_name":"Journal of the American Medical Informatics Association","issn_l":"1067-5027","issn":["1067-5027","1527-974X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310311648","host_organization_name":"Oxford University Press","host_organization_lineage":["https://openalex.org/P4310311648","https://openalex.org/P4310311647"],"host_organization_lineage_names":["Oxford University Press","University of Oxford"],"type":"journal"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the American Medical Informatics Association","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/9","score":0.4099999964237213,"display_name":"Industry, innovation and infrastructure"}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":6,"referenced_works":["https://openalex.org/W287096110","https://openalex.org/W1974133253","https://openalex.org/W2024642024","https://openalex.org/W2157845740","https://openalex.org/W2317241234","https://openalex.org/W2949180747"],"related_works":["https://openalex.org/W2796452908","https://openalex.org/W2804734454","https://openalex.org/W4206588215","https://openalex.org/W2376700875","https://openalex.org/W3174083885","https://openalex.org/W2968672613","https://openalex.org/W2325407422","https://openalex.org/W3044657763","https://openalex.org/W2388185663","https://openalex.org/W579898874"],"abstract_inverted_index":{"OBJECTIVE:":[0],"To":[1],"provide":[2,233],"a":[3,98,110,144,188,245],"legal":[4,130,182,222],"and":[5,47,53,106,113,134,152,183,190,198,204,210,223,231,239,251,269,272],"ethical":[6,184,224,237],"analysis":[7],"of":[8,10,50,74,80,154,168,181,201,212],"some":[9],"the":[11,16,44,51,61,67,81,89,94,123,150,160,166,195,208,234],"implementation":[12],"challenges":[13],"faced":[14],"by":[15,31],"Population":[17],"Therapeutics":[18],"Research":[19],"Group":[20],"(PTRG)":[21],"at":[22,178],"Memorial":[23],"University":[24],"(Canada),":[25],"in":[26,109,132,163,207,229],"using":[27],"genealogical":[28],"information":[29,108],"offered":[30],"individuals":[32],"for":[33,63,159,193,261,276],"its":[34],"genetics":[35],"research":[36,146,155,170,213,274],"database.":[37,125],"MATERIALS":[38],"AND":[39],"METHODS:":[40],"This":[41],"paper":[42],"describes":[43],"unique":[45,145],"historical":[46],"genetic":[48,277],"characteristics":[49],"Newfoundland":[52,68,82,133,230],"Labrador":[54,135,232],"founder":[55,83],"population,":[56],"which":[57,186],"gave":[58],"rise":[59],"to":[60,65,87,118,243,267],"opportunity":[62],"PTRG":[64,91],"build":[66],"Genealogy":[69],"Database":[70],"containing":[71],"digitized":[72],"records":[73,79],"all":[75],"pre-confederation":[76],"(1949)":[77],"census":[78],"population.":[84],"In":[85],"addition":[86],"building":[88],"database,":[90,112],"has":[92],"developed":[93],"Heritability":[95],"Analytics":[96],"Infrastructure,":[97],"data":[99,214],"management":[100],"structure":[101],"that":[102,226],"stores":[103],"genotype,":[104],"phenotype,":[105],"pedigree":[107,120],"single":[111],"custom":[114],"linkage":[115],"software":[116],"(KINNECT)":[117],"perform":[119],"linkages":[121],"on":[122],"genealogy":[124],"DISCUSSION:":[126],"A":[127],"newly":[128],"adopted":[129],"regimen":[131],"is":[136],"discussed.":[137],"It":[138],"incorporates":[139],"health":[140],"privacy":[141,196,249],"legislation":[142],"with":[143],"ethics":[147,156,171],"statute":[148],"governing":[149],"composition":[151],"activities":[153],"boards":[157],"and,":[158],"first":[161],"time":[162],"Canada,":[164],"elevating":[165],"status":[167],"national":[169],"guidelines":[172],"into":[173],"law.":[174],"The":[175,220],"discussion":[176],"looks":[177],"this":[179],"integration":[180],"principles":[185],"provides":[187],"flexible":[189],"seamless":[191],"framework":[192],"balancing":[194],"rights":[197],"welfare":[199],"interests":[200,250],"individuals,":[202],"families,":[203],"larger":[205],"societies":[206],"creation":[209],"use":[211,270],"infrastructures":[215],"as":[216,264],"public":[217,252],"goods.":[218,253],"CONCLUSION:":[219],"complementary":[221],"frameworks":[225],"now":[227],"coexist":[228],"legislative":[235],"authority,":[236],"legitimacy,":[238],"practical":[240],"flexibility":[241],"needed":[242],"find":[244],"workable":[246],"balance":[247],"between":[248],"Such":[254],"an":[255],"approach":[256],"may":[257],"also":[258],"be":[259],"instructive":[260],"other":[262],"jurisdictions":[263],"they":[265],"seek":[266],"construct":[268],"biobanks":[271],"related":[273],"platforms":[275],"research.":[278]},"counts_by_year":[{"year":2023,"cited_by_count":2},{"year":2018,"cited_by_count":1},{"year":2016,"cited_by_count":1},{"year":2015,"cited_by_count":1},{"year":2012,"cited_by_count":1}],"updated_date":"2026-05-19T21:40:30.786675","created_date":"2025-10-10T00:00:00"}