{"id":"https://openalex.org/W2072836570","doi":"https://doi.org/10.1145/1839994.1839996","title":"The consent process in medical research involving DNA databanks","display_name":"The consent process in medical research involving DNA databanks","publication_year":2010,"publication_date":"2010-06-01","ids":{"openalex":"https://openalex.org/W2072836570","doi":"https://doi.org/10.1145/1839994.1839996","mag":"2072836570"},"language":"en","primary_location":{"id":"doi:10.1145/1839994.1839996","is_oa":false,"landing_page_url":"https://doi.org/10.1145/1839994.1839996","pdf_url":null,"source":{"id":"https://openalex.org/S4210183329","display_name":"ACM SIGCAS Computers and Society","issn_l":"0095-2737","issn":["0095-2737","2167-3055"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"ACM SIGCAS Computers and Society","raw_type":"journal-article"},"type":"article","indexed_in":["crossref"],"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/A5069052752","display_name":"Herman T. Tavani","orcid":null},"institutions":[{"id":"https://openalex.org/I198062273","display_name":"Rivier University","ror":"https://ror.org/02s3pgd18","country_code":"US","type":"education","lineage":["https://openalex.org/I198062273"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Herman T. Tavani","raw_affiliation_strings":["Rivier College","Rivier College#TAB#"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Rivier College","institution_ids":["https://openalex.org/I198062273"]},{"raw_affiliation_string":"Rivier College#TAB#","institution_ids":["https://openalex.org/I198062273"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5080661434","display_name":"Maria \u0392ottis","orcid":null},"institutions":[{"id":"https://openalex.org/I187792471","display_name":"Ionian University","ror":"https://ror.org/01xm4n520","country_code":"GR","type":"education","lineage":["https://openalex.org/I187792471"]}],"countries":["GR"],"is_corresponding":false,"raw_author_name":"Maria Bottis","raw_affiliation_strings":["Ionian University (Greece)"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Ionian University (Greece)","institution_ids":["https://openalex.org/I187792471"]}]}],"institutions":[],"countries_distinct_count":2,"institutions_distinct_count":2,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":5,"citation_normalized_percentile":{"value":0.19937963,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":96},"biblio":{"volume":"40","issue":"2","first_page":"11","last_page":"21"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9994000196456909,"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":0.9994000196456909,"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/T13417","display_name":"Biomedical Ethics and Regulation","score":0.989799976348877,"subfield":{"id":"https://openalex.org/subfields/2737","display_name":"Physiology"},"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/T12749","display_name":"Race, Genetics, and Society","score":0.9876999855041504,"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/informed-consent","display_name":"Informed consent","score":0.8262156844139099},{"id":"https://openalex.org/keywords/context","display_name":"Context (archaeology)","score":0.5873258709907532},{"id":"https://openalex.org/keywords/process","display_name":"Process (computing)","score":0.579063355922699},{"id":"https://openalex.org/keywords/engineering-ethics","display_name":"Engineering ethics","score":0.4649440348148346},{"id":"https://openalex.org/keywords/biobank","display_name":"Biobank","score":0.4108476936817169},{"id":"https://openalex.org/keywords/psychology","display_name":"Psychology","score":0.3679540157318115},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.3234030604362488},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.2938883304595947},{"id":"https://openalex.org/keywords/alternative-medicine","display_name":"Alternative medicine","score":0.1863369643688202},{"id":"https://openalex.org/keywords/bioinformatics","display_name":"Bioinformatics","score":0.17003855109214783},{"id":"https://openalex.org/keywords/engineering","display_name":"Engineering","score":0.14126476645469666},{"id":"https://openalex.org/keywords/biology","display_name":"Biology","score":0.10021451115608215},{"id":"https://openalex.org/keywords/pathology","display_name":"Pathology","score":0.0694907009601593}],"concepts":[{"id":"https://openalex.org/C68122502","wikidata":"https://www.wikidata.org/wiki/Q764527","display_name":"Informed consent","level":3,"score":0.8262156844139099},{"id":"https://openalex.org/C2779343474","wikidata":"https://www.wikidata.org/wiki/Q3109175","display_name":"Context (archaeology)","level":2,"score":0.5873258709907532},{"id":"https://openalex.org/C98045186","wikidata":"https://www.wikidata.org/wiki/Q205663","display_name":"Process (computing)","level":2,"score":0.579063355922699},{"id":"https://openalex.org/C55587333","wikidata":"https://www.wikidata.org/wiki/Q1133029","display_name":"Engineering ethics","level":1,"score":0.4649440348148346},{"id":"https://openalex.org/C116567970","wikidata":"https://www.wikidata.org/wiki/Q864217","display_name":"Biobank","level":2,"score":0.4108476936817169},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.3679540157318115},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.3234030604362488},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2938883304595947},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.1863369643688202},{"id":"https://openalex.org/C60644358","wikidata":"https://www.wikidata.org/wiki/Q128570","display_name":"Bioinformatics","level":1,"score":0.17003855109214783},{"id":"https://openalex.org/C127413603","wikidata":"https://www.wikidata.org/wiki/Q11023","display_name":"Engineering","level":0,"score":0.14126476645469666},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.10021451115608215},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0694907009601593},{"id":"https://openalex.org/C111919701","wikidata":"https://www.wikidata.org/wiki/Q9135","display_name":"Operating system","level":1,"score":0.0},{"id":"https://openalex.org/C151730666","wikidata":"https://www.wikidata.org/wiki/Q7205","display_name":"Paleontology","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1145/1839994.1839996","is_oa":false,"landing_page_url":"https://doi.org/10.1145/1839994.1839996","pdf_url":null,"source":{"id":"https://openalex.org/S4210183329","display_name":"ACM SIGCAS Computers and Society","issn_l":"0095-2737","issn":["0095-2737","2167-3055"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310319798","host_organization_name":"Association for Computing Machinery","host_organization_lineage":["https://openalex.org/P4310319798"],"host_organization_lineage_names":["Association for Computing Machinery"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"ACM SIGCAS Computers and Society","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":22,"referenced_works":["https://openalex.org/W38201321","https://openalex.org/W564901937","https://openalex.org/W1492474611","https://openalex.org/W1551298094","https://openalex.org/W1571882418","https://openalex.org/W1585482355","https://openalex.org/W1848883898","https://openalex.org/W1981065225","https://openalex.org/W1983301804","https://openalex.org/W1983885899","https://openalex.org/W2015007060","https://openalex.org/W2019599952","https://openalex.org/W2020399846","https://openalex.org/W2076000709","https://openalex.org/W2107828364","https://openalex.org/W2134516551","https://openalex.org/W2142099599","https://openalex.org/W2144041261","https://openalex.org/W2157172152","https://openalex.org/W2418583345","https://openalex.org/W3122096863","https://openalex.org/W4211095984"],"related_works":["https://openalex.org/W3113746618","https://openalex.org/W4226051228","https://openalex.org/W3017691140","https://openalex.org/W2024651825","https://openalex.org/W4384208482","https://openalex.org/W4244742767","https://openalex.org/W2470939431","https://openalex.org/W4226156868","https://openalex.org/W2323349009","https://openalex.org/W4248738672"],"abstract_inverted_index":{"Organized":[0],"into":[1],"three":[2],"main":[3],"parts,":[4],"this":[5],"paper":[6],"examines":[7],"some":[8,44],"challenges":[9,46],"for":[10,50],"the":[11,28,51,66,79,92,95,99],"informed-consent":[12,53],"process":[13,54,97],"in":[14,55,98],"medical":[15,102],"research":[16,105],"where":[17,60],"DNA":[18,107],"databanks":[19],"are":[20,63],"employed.":[21],"In":[22,65],"Part":[23,40],"1,":[24],"we":[25,71,86],"briefly":[26],"describe":[27],"principle":[29],"of":[30,75,81,94,101],"informed":[31],"consent":[32,76,96],"and":[33,68,103],"show":[34],"why":[35],"it":[36],"is":[37],"ethically":[38],"important.":[39],"2":[41],"focuses":[42],"on":[43,78],"specific":[45],"that":[47,48],"arise":[49],"traditional":[52],"population-wide":[56],"genetics/genomics":[57],"research,":[58],"especially":[59],"data-mining":[61],"techniques":[62],"used.":[64],"third":[67],"final":[69],"section,":[70],"defend":[72],"a":[73,82],"model":[74],"based":[77],"notion":[80],"\"charitable":[83],"trust,\"":[84],"which":[85],"believe":[87],"can":[88],"help":[89],"to":[90],"preserve":[91],"integrity":[93],"context":[100],"genetic":[104],"involving":[106],"databanks.":[108]},"counts_by_year":[{"year":2025,"cited_by_count":2},{"year":2020,"cited_by_count":1},{"year":2017,"cited_by_count":1},{"year":2016,"cited_by_count":1}],"updated_date":"2026-05-21T06:26:12.895304","created_date":"2025-10-10T00:00:00"}