{"id":"https://openalex.org/W71361974","doi":null,"title":"Genetic research with stored biological materials: ethics and practice.","display_name":"Genetic research with stored biological materials: ethics and practice.","publication_year":2010,"publication_date":"2010-03-01","ids":{"openalex":"https://openalex.org/W71361974","mag":"71361974","pmid":"https://pubmed.ncbi.nlm.nih.gov/20373733","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/3052851"},"language":"en","primary_location":{"id":"pmid:20373733","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/20373733","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":"IRB","raw_type":"Journal Article"},"volume":null,"type":"article","indexed_in":["pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3052851","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5031025208","display_name":"Leslie E. Wolf","orcid":"https://orcid.org/0000-0002-4660-8383","observed_orcids":["https://orcid.org/0000-0002-4660-8383"]},"institutions":[{"id":"https://openalex.org/I181565077","display_name":"Georgia State University","ror":"https://ror.org/03qt6ba18","country_code":"US","type":"education","lineage":["https://openalex.org/I181565077"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Leslie E Wolf","raw_affiliation_strings":["Georgia State University College of Law, Atlanta, GA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Georgia State University College of Law, Atlanta, GA, USA","institution_ids":["https://openalex.org/I181565077"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5012401130","display_name":"Timothy A. Bouley","orcid":"https://orcid.org/0000-0001-7603-9778","observed_orcids":["https://orcid.org/0000-0001-7603-9778"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Timothy A Bouley","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5009449264","display_name":"Charles E. McCulloch","orcid":"https://orcid.org/0000-0002-1279-6179","observed_orcids":["https://orcid.org/0000-0002-1279-6179"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Charles E McCulloch","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":3.4862,"has_fulltext":false,"cited_by_count":22,"citation_normalized_percentile":{"value":0.91662643,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":88,"max":98},"biblio":{"volume":"32","issue":"2","first_page":"7","last_page":"18"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.9970999956130981,"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":0.9970999956130981,"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":0.002099999925121665,"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":0.0003000000142492354,"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-research-ethics","display_name":"genetic research ethics","score":0.8180000185966492},{"id":"https://openalex.org/keywords/informed-consent","display_name":"informed consent","score":0.7559999823570251},{"id":"https://openalex.org/keywords/genetic-testing","display_name":"genetic testing","score":0.6000000238418579},{"id":"https://openalex.org/keywords/disclosure-of-research-results","display_name":"disclosure of research results","score":0.7419999837875366},{"id":"https://openalex.org/keywords/psychological-harm","display_name":"psychological harm","score":0.7350000143051147},{"id":"https://openalex.org/keywords/genetic-discrimination","display_name":"genetic discrimination","score":0.7170000076293945},{"id":"https://openalex.org/keywords/pooled-dna","display_name":"pooled DNA","score":0.4659999907016754},{"id":"https://openalex.org/keywords/human-genome-mapping","display_name":"human genome mapping","score":0.6269999742507935},{"id":"https://openalex.org/keywords/cell-lines","display_name":"cell lines","score":0.3479999899864197}],"concepts":[{"id":"https://openalex.org/C2777363581","wikidata":"https://www.wikidata.org/wiki/Q15098235","display_name":"Harm","level":2,"score":0.7703045010566711},{"id":"https://openalex.org/C2780673598","wikidata":"https://www.wikidata.org/wiki/Q285223","display_name":"Genetic testing","level":2,"score":0.569377064704895},{"id":"https://openalex.org/C68122502","wikidata":"https://www.wikidata.org/wiki/Q764527","display_name":"Informed consent","level":3,"score":0.5584798455238342},{"id":"https://openalex.org/C2984787389","wikidata":"https://www.wikidata.org/wiki/Q4915000","display_name":"Biological materials","level":2,"score":0.5415665507316589},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.49594220519065857},{"id":"https://openalex.org/C197077220","wikidata":"https://www.wikidata.org/wiki/Q720988","display_name":"Human genome","level":4,"score":0.45678696036338806},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4353472590446472},{"id":"https://openalex.org/C2988867146","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Human disease","level":3,"score":0.4166979193687439},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.3001110553741455},{"id":"https://openalex.org/C54355233","wikidata":"https://www.wikidata.org/wiki/Q7162","display_name":"Genetics","level":1,"score":0.29136666655540466},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.2838267683982849},{"id":"https://openalex.org/C141231307","wikidata":"https://www.wikidata.org/wiki/Q7020","display_name":"Genome","level":3,"score":0.23310810327529907},{"id":"https://openalex.org/C204787440","wikidata":"https://www.wikidata.org/wiki/Q188504","display_name":"Alternative medicine","level":2,"score":0.18119105696678162},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.16656270623207092},{"id":"https://openalex.org/C104317684","wikidata":"https://www.wikidata.org/wiki/Q7187","display_name":"Gene","level":2,"score":0.1604653000831604},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.10532763600349426},{"id":"https://openalex.org/C186060115","wikidata":"https://www.wikidata.org/wiki/Q30336093","display_name":"Biological system","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D003219","descriptor_name":"Confidentiality","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":"D007258","descriptor_name":"Informed Consent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009927","descriptor_name":"Tissue and Organ Procurement","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D010067","descriptor_name":"Ownership","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D014019","descriptor_name":"Tissue Donors","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":"D018070","descriptor_name":"Biological Specimen Banks","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true},{"descriptor_ui":"D019983","descriptor_name":"Guideline Adherence","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D028744","descriptor_name":"Ethics Committees, Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D030881","descriptor_name":"Disclosure","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D036281","descriptor_name":"Genetic Research","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":true}],"locations_count":4,"locations":[{"id":"pmid:20373733","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/20373733","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":"IRB","raw_type":"Journal Article"},{"id":"pmh:oai:pubmedcentral.nih.gov:3052851","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3052851","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":"IRB","raw_type":"Text"},{"id":"pmh:oai:readingroom.law.gsu.edu:faculty_pub-1623","doi":null,"is_oa":false,"landing_page_url":"https://readingroom.law.gsu.edu/faculty_pub/624","pdf_url":null,"source":{"id":"https://openalex.org/S7407064349","display_name":"bepress Legal Repository","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Faculty Publications By Year","raw_type":"text"},{"id":"pmh:oai:repository.library.georgetown.edu:10822/515355","doi":null,"is_oa":false,"landing_page_url":"http://hdl.handle.net/10822/515355","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":"330753","raw_type":null}],"best_oa_location":{"id":"pmh:oai:pubmedcentral.nih.gov:3052851","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/3052851","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":"IRB","raw_type":"Text"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":0.46810001134872437,"display_name":"Good health and well-being"}],"sustainable_development_goals_aurora":[{"id":"https://metadata.un.org/sdg/3","score":0.5799999833106995,"display_name":"Good health and well-being"}],"study_designs":[],"awards":[{"id":"https://openalex.org/G296760004","display_name":"Ethics and Practice in Stored Tissue Genetic Research","funder_award_id":"5r01ca117868-02","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"}],"funders":[{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":43,"referenced_works":["https://openalex.org/W1541893084","https://openalex.org/W1590008697","https://openalex.org/W1909009735","https://openalex.org/W1922945082","https://openalex.org/W1939134882","https://openalex.org/W1948797720","https://openalex.org/W1975765667","https://openalex.org/W1983973208","https://openalex.org/W1992459498","https://openalex.org/W1992693554","https://openalex.org/W1993104742","https://openalex.org/W2010066815","https://openalex.org/W2021809715","https://openalex.org/W2028807476","https://openalex.org/W2040228409","https://openalex.org/W2057135522","https://openalex.org/W2058111723","https://openalex.org/W2062261954","https://openalex.org/W2067439408","https://openalex.org/W2079287002","https://openalex.org/W2080308138","https://openalex.org/W2090740451","https://openalex.org/W2094830592","https://openalex.org/W2096599198","https://openalex.org/W2099415836","https://openalex.org/W2099616416","https://openalex.org/W2109100666","https://openalex.org/W2114617522","https://openalex.org/W2127385343","https://openalex.org/W2129907698","https://openalex.org/W2130804021","https://openalex.org/W2147118521","https://openalex.org/W2153934590","https://openalex.org/W2155462734","https://openalex.org/W2172426908","https://openalex.org/W2405107936","https://openalex.org/W2410627788","https://openalex.org/W2902914441","https://openalex.org/W2915513884","https://openalex.org/W3121555075","https://openalex.org/W4234877116","https://openalex.org/W4295758029","https://openalex.org/W4298866775"],"related_works":["https://openalex.org/W1518970282","https://openalex.org/W2013373952","https://openalex.org/W4240603234","https://openalex.org/W1958609847","https://openalex.org/W4232800714","https://openalex.org/W1518984127","https://openalex.org/W2135934444","https://openalex.org/W2079287002","https://openalex.org/W1693606793","https://openalex.org/W2069722279"],"abstract_inverted_index":{"any":[0],"biomedical":[1],"advances?particularly":[2],"I":[3],"":[4],"/":[5],"advances":[6],"involving":[7],"genetics?have":[8],"only":[9],"JL":[10,11],"been":[12,23,180],"achieved":[13],"through":[14],"research":[15,21,89,173,203,209,248],"with":[16,32,90,174],"human":[17,62],"biological":[18,79,92,103,157,176],"materials.1":[19],"Such":[20],"has":[22],"critical":[24],"in":[25,136,193,246],"identifying":[26],"genes":[27],"and":[28,41,49,64,70,83,107,143,161,199,235,240],"gene":[29],"changes":[30],"associated":[31],"disease":[33,35],"or":[34,227],"susceptibility,2":[36],"determining":[37],"causes":[38],"of":[39,60,78,185,190,242],"mortality":[40],"morbidity,3":[42],"deriving":[43],"cell":[44],"lines":[45],"for":[46,81,163,172,188],"further":[47,112],"research,4":[48],"developing":[50],"new":[51],"approaches":[52],"to":[53,67,109,120,122,146,208,217,222],"therapy":[54],"such":[55,186],"as":[56,219,221],"pharmacogenetics.5":[57],"Complete":[58],"mapping":[59],"the":[61,75,183,191,237,247],"genome":[63],"improved":[65],"ability":[66],"conduct":[68],"genetic":[69,88,243],"genomic":[71],"analyses":[72],"expand":[73],"enormously":[74],"potential":[76,214],"value":[77],"materials":[80,93,158,192],"medicine":[82],"science.6":[84],"Although":[85],"scientifically":[86],"rewarding,":[87],"stored":[91,102,162],"raises":[94,211],"several":[95],"ethi":[96],"cal":[97],"concerns.":[98],"DNA":[99],"obtained":[100,245],"from":[101],"material":[104],"is":[105],"stable":[106],"specific":[108,123],"an":[110],"individual;":[111],"more,":[113],"genetic/genomic":[114],"test":[115],"results":[116,204],"have":[117,179],"become":[118],"easier":[119],"link":[121],"individuals,":[124,218],"even":[125,152],"among":[126],"pooled":[127],"DNA.7":[128],"Genetic":[129],"testing":[130],"may":[131,150],"reveal":[132],"information":[133,244],"about":[134,182,213,231,236],"individuals'?and,":[135],"some":[137],"cases,":[138],"their":[139,156,175],"family":[140],"mem":[141],"bers'?present":[142],"future":[144,164],"susceptibility":[145],"illness.8":[147],"Moreover,":[148],"individuals":[149,168],"not":[151],"be":[153,206],"aware":[154],"that":[155],"were":[159],"collected":[160],"research.9":[165],"Even":[166],"when":[167],"gave":[169],"explicit":[170],"consent":[171,187],"materials,":[177],"concerns":[178,212],"raised":[181],"validity":[184,239],"use":[189],"future,":[194],"unspecified":[195],"studies.10":[196],"Finally,":[197],"whether":[198],"under":[200],"what":[201],"conditions":[202],"should":[205],"disclosed":[207],"participants":[210],"psychological":[215],"harm":[216],"well":[220],"groups,":[223,234],"if":[224],"findings":[225],"create":[226],"reinforce":[228],"negative":[229],"stereotypes":[230],"socially":[232],"identifiable":[233],"clinical":[238],"utility":[241],"context.11":[249]},"counts_by_year":[{"year":2025,"cited_by_count":1},{"year":2024,"cited_by_count":1},{"year":2022,"cited_by_count":1},{"year":2021,"cited_by_count":1},{"year":2019,"cited_by_count":1},{"year":2016,"cited_by_count":1},{"year":2015,"cited_by_count":4},{"year":2014,"cited_by_count":1},{"year":2013,"cited_by_count":4},{"year":2012,"cited_by_count":4}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2016-06-24T00:00:00"}