{"id":"https://openalex.org/W2129706078","doi":"https://doi.org/10.1146/annurev-genom-082509-141711","title":"Informed Consent in Genomics and Genetic Research","display_name":"Informed Consent in Genomics and Genetic Research","publication_year":2010,"publication_date":"2010-09-01","ids":{"openalex":"https://openalex.org/W2129706078","doi":"https://doi.org/10.1146/annurev-genom-082509-141711","mag":"2129706078","pmid":"https://pubmed.ncbi.nlm.nih.gov/20477535","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/3216676"},"language":"en","primary_location":{"id":"doi:10.1146/annurev-genom-082509-141711","doi":"https://doi.org/10.1146/annurev-genom-082509-141711","is_oa":false,"landing_page_url":"https://doi.org/10.1146/annurev-genom-082509-141711","pdf_url":null,"source":{"id":"https://openalex.org/S8095556","display_name":"Annual Review of Genomics and Human Genetics","issn_l":"1527-8204","issn":["1527-8204","1545-293X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","jufo-2","ki-jl-1","medline","norway-1","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320373","host_organization_name":"Annual Reviews","host_organization_lineage":["https://openalex.org/P4310320373"],"host_organization_lineage_names":["Annual Reviews"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Annual Review of Genomics and Human Genetics","raw_type":"journal-article"},"volume":null,"type":"review","is_traditional":true,"indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3216676","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5065618896","display_name":"Amy L. McGuire","orcid":"https://orcid.org/0000-0002-7819-519X","observed_orcids":["https://orcid.org/0000-0002-7819-519X"]},"institutions":[{"id":"https://openalex.org/I181547552","display_name":"Baylor College of Medicine","ror":"https://ror.org/02pttbw34","country_code":"US","type":"education","lineage":["https://openalex.org/I181547552","https://openalex.org/I2801539370"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Amy L. McGuire","raw_affiliation_strings":["Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston,Texas 77030;","Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA. amcguire@bcm.edu"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston,Texas 77030;","institution_ids":["https://openalex.org/I181547552"]},{"raw_affiliation_string":"Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA. amcguire@bcm.edu","institution_ids":["https://openalex.org/I181547552"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5005427313","display_name":"Laura M. Beskow","orcid":"https://orcid.org/0000-0002-9314-1915","observed_orcids":["https://orcid.org/0000-0002-9314-1915"]},"institutions":[{"id":"https://openalex.org/I170897317","display_name":"Duke University","ror":"https://ror.org/00py81415","country_code":"US","type":"education","lineage":["https://openalex.org/I170897317"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Laura M. Beskow","raw_affiliation_strings":["Duke Institute for Genome Sciences and Policy, Center for Genome Ethics, Law and Policy, Duke University, Durham, North Carolina 27708"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Duke Institute for Genome Sciences and Policy, Center for Genome Ethics, Law and Policy, Duke University, Durham, North Carolina 27708","institution_ids":["https://openalex.org/I170897317"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":1.1568,"has_fulltext":false,"cited_by_count":215,"citation_normalized_percentile":{"value":0.74371257,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":99,"max":100},"biblio":{"volume":"11","issue":"1","first_page":"361","last_page":"381"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9980000257492065,"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":0.9980000257492065,"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/T13147","display_name":"Ethics and bioethics in healthcare","score":0.0019000000320374966,"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/T13275","display_name":"Medical and Health Sciences Research","score":9.999999747378752e-05,"subfield":{"id":"https://openalex.org/subfields/3308","display_name":"Law"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/informed-consent","display_name":"informed consent","score":1.0},{"id":"https://openalex.org/keywords/genomic-research","display_name":"genomic research","score":0.8529999852180481},{"id":"https://openalex.org/keywords/genetic-research","display_name":"genetic research","score":0.9760000109672546},{"id":"https://openalex.org/keywords/research-ethics","display_name":"research ethics","score":0.6980000138282776},{"id":"https://openalex.org/keywords/protection-of-research-participants","display_name":"research participant protection","score":0.7789999842643738},{"id":"https://openalex.org/keywords/research-participant-autonomy","display_name":"research participant autonomy","score":0.5199999809265137}],"concepts":[{"id":"https://openalex.org/C68122502","wikidata":"https://www.wikidata.org/wiki/Q764527","display_name":"Informed consent","level":3,"score":0.8157694339752197},{"id":"https://openalex.org/C2778447849","wikidata":"https://www.wikidata.org/wiki/Q2648051","display_name":"Obligation","level":2,"score":0.6288800239562988},{"id":"https://openalex.org/C189206191","wikidata":"https://www.wikidata.org/wiki/Q222046","display_name":"Genomics","level":4,"score":0.5978784561157227},{"id":"https://openalex.org/C153997805","wikidata":"https://www.wikidata.org/wiki/Q42240","display_name":"Research ethics","level":2,"score":0.5375563502311707},{"id":"https://openalex.org/C116567970","wikidata":"https://www.wikidata.org/wiki/Q864217","display_name":"Biobank","level":2,"score":0.4875042140483856},{"id":"https://openalex.org/C55587333","wikidata":"https://www.wikidata.org/wiki/Q1133029","display_name":"Engineering ethics","level":1,"score":0.41570889949798584},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4139312207698822},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.2568280100822449},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.23488035798072815},{"id":"https://openalex.org/C54355233","wikidata":"https://www.wikidata.org/wiki/Q7162","display_name":"Genetics","level":1,"score":0.23250243067741394},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.22566932439804077},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.1664949357509613},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.14424383640289307},{"id":"https://openalex.org/C141231307","wikidata":"https://www.wikidata.org/wiki/Q7020","display_name":"Genome","level":3,"score":0.1326848864555359},{"id":"https://openalex.org/C104317684","wikidata":"https://www.wikidata.org/wiki/Q7187","display_name":"Gene","level":2,"score":0.0},{"id":"https://openalex.org/C127413603","wikidata":"https://www.wikidata.org/wiki/Q11023","display_name":"Engineering","level":0,"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":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007258","descriptor_name":"Informed Consent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D013048","descriptor_name":"Specimen Handling","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014481","descriptor_name":"United States","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"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}],"locations_count":5,"locations":[{"id":"doi:10.1146/annurev-genom-082509-141711","doi":"https://doi.org/10.1146/annurev-genom-082509-141711","is_oa":false,"landing_page_url":"https://doi.org/10.1146/annurev-genom-082509-141711","pdf_url":null,"source":{"id":"https://openalex.org/S8095556","display_name":"Annual Review of Genomics and Human Genetics","issn_l":"1527-8204","issn":["1527-8204","1545-293X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","jufo-2","ki-jl-1","medline","norway-1","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320373","host_organization_name":"Annual Reviews","host_organization_lineage":["https://openalex.org/P4310320373"],"host_organization_lineage_names":["Annual Reviews"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Annual Review of Genomics and Human Genetics","raw_type":"journal-article"},{"id":"pmid:20477535","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/20477535","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":"Annual review of genomics and human genetics","raw_type":"Journal Article"},{"id":"pmh:oai:europepmc.org:2217945","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3216676","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,"listed_in":[],"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":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"Text"},{"id":"pmh:oai:pubmedcentral.nih.gov:3216676","doi":null,"is_oa":true,"landing_page_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC3216676/","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"Annu Rev Genomics Hum Genet","raw_type":"Text"},{"id":"pmh:oai:repository.library.georgetown.edu:10822/515872","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10822/515872","pdf_url":null,"source":{"id":"https://openalex.org/S4306402467","display_name":"DigitalGeorgetown (Georgetown University Library)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210145449","host_organization_name":"Center for Security and Emerging Technology","host_organization_lineage":["https://openalex.org/I4210145449"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"334657","raw_type":null}],"best_oa_location":{"id":"pmh:oai:europepmc.org:2217945","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3216676","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,"listed_in":[],"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":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":null,"raw_type":"Text"},"sustainable_development_goals":[],"study_designs":[],"awards":[{"id":"https://openalex.org/G2412989291","display_name":"The ethics of consent for the public release of potentially identifiable DNA data","funder_award_id":"R01HG004333","funder_id":"https://openalex.org/F4320337348","funder_display_name":"National Human Genome Research Institute"},{"id":"https://openalex.org/G2558886138","display_name":"Ethical Legal and Social Dimensions of Human Microbiome Research","funder_award_id":"R01HG004853","funder_id":"https://openalex.org/F4320337348","funder_display_name":"National Human Genome Research Institute"},{"id":"https://openalex.org/G7854749846","display_name":"Duke CTSI","funder_award_id":"UL1RR024128","funder_id":"https://openalex.org/F4320337375","funder_display_name":"National Center for Research Resources"}],"funders":[{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320337348","display_name":"National Human Genome Research Institute","ror":"https://ror.org/00baak391"},{"id":"https://openalex.org/F4320337375","display_name":"National Center for Research Resources","ror":"https://ror.org/04pw6fb54"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":89,"referenced_works":["https://openalex.org/W2475656","https://openalex.org/W55587196","https://openalex.org/W1000984341","https://openalex.org/W1479918017","https://openalex.org/W1494813434","https://openalex.org/W1498556839","https://openalex.org/W1499041445","https://openalex.org/W1502169428","https://openalex.org/W1551526306","https://openalex.org/W1554664098","https://openalex.org/W1585652716","https://openalex.org/W1728767602","https://openalex.org/W1848250457","https://openalex.org/W1852491549","https://openalex.org/W1922945082","https://openalex.org/W1973589876","https://openalex.org/W1974831011","https://openalex.org/W1976343069","https://openalex.org/W1976515089","https://openalex.org/W1986696066","https://openalex.org/W1991163424","https://openalex.org/W1994805877","https://openalex.org/W1995524533","https://openalex.org/W1999447421","https://openalex.org/W2006776184","https://openalex.org/W2015551662","https://openalex.org/W2016172156","https://openalex.org/W2026479502","https://openalex.org/W2027848174","https://openalex.org/W2028692565","https://openalex.org/W2029171082","https://openalex.org/W2035177573","https://openalex.org/W2037719091","https://openalex.org/W2039777636","https://openalex.org/W2040131158","https://openalex.org/W2040228409","https://openalex.org/W2044317520","https://openalex.org/W2052213828","https://openalex.org/W2057135522","https://openalex.org/W2059987741","https://openalex.org/W2062261954","https://openalex.org/W2063419268","https://openalex.org/W2064337796","https://openalex.org/W2066874799","https://openalex.org/W2071122456","https://openalex.org/W2073027025","https://openalex.org/W2074294301","https://openalex.org/W2074381617","https://openalex.org/W2080776248","https://openalex.org/W2081271735","https://openalex.org/W2082618767","https://openalex.org/W2085163183","https://openalex.org/W2088865542","https://openalex.org/W2089914326","https://openalex.org/W2091669131","https://openalex.org/W2091873290","https://openalex.org/W2092628377","https://openalex.org/W2095272373","https://openalex.org/W2095513017","https://openalex.org/W2106920243","https://openalex.org/W2108186645","https://openalex.org/W2108755276","https://openalex.org/W2110337495","https://openalex.org/W2112120088","https://openalex.org/W2114161604","https://openalex.org/W2117903034","https://openalex.org/W2122732537","https://openalex.org/W2124862599","https://openalex.org/W2127816629","https://openalex.org/W2129745353","https://openalex.org/W2133650606","https://openalex.org/W2134783591","https://openalex.org/W2139623473","https://openalex.org/W2142185679","https://openalex.org/W2147118521","https://openalex.org/W2152491080","https://openalex.org/W2155462734","https://openalex.org/W2328924388","https://openalex.org/W2330219531","https://openalex.org/W2468248308","https://openalex.org/W2499590469","https://openalex.org/W2797877904","https://openalex.org/W3000365336","https://openalex.org/W3124242265","https://openalex.org/W3125904344","https://openalex.org/W4230231032","https://openalex.org/W4241771140","https://openalex.org/W4247098912","https://openalex.org/W4298866775"],"related_works":["https://openalex.org/W2333249266","https://openalex.org/W2977819355","https://openalex.org/W4210516021","https://openalex.org/W2106606850","https://openalex.org/W4239732739","https://openalex.org/W2129110146","https://openalex.org/W3014254782","https://openalex.org/W2534483006","https://openalex.org/W7097916659","https://openalex.org/W2028869178"],"abstract_inverted_index":{"There":[0],"are":[1],"several":[2],"features":[3],"of":[4,13,26,49],"genetic":[5,30],"and":[6,31,39,59],"genomic":[7,32],"research":[8,33,61,71],"that":[9,44],"challenge":[10],"established":[11],"norms":[12],"informed":[14,27],"consent.":[15],"In":[16],"this":[17],"paper,":[18],"we":[19],"discuss":[20],"these":[21,50],"challenges,":[22],"explore":[23],"specific":[24],"elements":[25],"consent":[28,42],"for":[29],"conducted":[34],"in":[35,68],"the":[36,55,64],"United":[37],"States,":[38],"consider":[40],"alternative":[41],"models":[43,51],"have":[45],"been":[46],"proposed.":[47],"All":[48],"attempt":[52],"to":[53,57],"balance":[54],"obligation":[56],"respect":[58],"protect":[60],"participants":[62],"with":[63],"larger":[65],"social":[66],"interest":[67],"advancing":[69],"beneficial":[70],"as":[72,74],"quickly":[73],"possible.":[75]},"counts_by_year":[{"year":2026,"cited_by_count":9},{"year":2025,"cited_by_count":11},{"year":2024,"cited_by_count":12},{"year":2023,"cited_by_count":12},{"year":2022,"cited_by_count":20},{"year":2021,"cited_by_count":14},{"year":2020,"cited_by_count":18},{"year":2019,"cited_by_count":15},{"year":2018,"cited_by_count":12},{"year":2017,"cited_by_count":14},{"year":2016,"cited_by_count":17},{"year":2015,"cited_by_count":17},{"year":2014,"cited_by_count":17},{"year":2013,"cited_by_count":10},{"year":2012,"cited_by_count":11}],"updated_date":"2026-11-10T11:39:43.021295","created_date":"2016-06-24T00:00:00"}
