{"id":"https://openalex.org/W2188649878","doi":null,"title":"Does family always matter? Public genomes and their effect on relatives","display_name":"Does family always matter? Public genomes and their effect on relatives","publication_year":2013,"publication_date":"2013-01-01","ids":{"openalex":"https://openalex.org/W2188649878","mag":"2188649878"},"language":"en","primary_location":{"id":"mag:2188649878","doi":null,"is_oa":false,"landing_page_url":"https://link.springer.com/content/pdf/10.1186/gm511.pdf","pdf_url":null,"source":null,"license":null,"license_id":null,"version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":null},"volume":null,"type":"article","is_traditional":true,"indexed_in":[],"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/A5090505297","display_name":"Stephen R. Quake","orcid":"https://orcid.org/0000-0002-1613-0809","observed_orcids":["https://orcid.org/0000-0002-1613-0809"]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Stephen R. Quake","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0002-1613-0809","affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5090505297"],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.8759999871253967,"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":0.8759999871253967,"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":0.09830000251531601,"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":0.013199999928474426,"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/hela-cells","display_name":"HeLa cells","score":0.6970000267028809},{"id":"https://openalex.org/keywords/henrietta-lacks","display_name":"Henrietta Lacks","score":0.9049999713897705},{"id":"https://openalex.org/keywords/family-consent","display_name":"family consent","score":0.4050000011920929},{"id":"https://openalex.org/keywords/biological-relatives","display_name":"biological relatives","score":0.6029999852180481},{"id":"https://openalex.org/keywords/informed-consent","display_name":"informed consent","score":0.5669999718666077},{"id":"https://openalex.org/keywords/genetic-privacy","display_name":"genetic privacy","score":0.5370000004768372},{"id":"https://openalex.org/keywords/data-sharing-policy","display_name":"data sharing policy","score":0.6600000262260437}],"concepts":[{"id":"https://openalex.org/C2777366897","wikidata":"https://www.wikidata.org/wiki/Q847482","display_name":"HeLa","level":3,"score":0.48766982555389404},{"id":"https://openalex.org/C2778355321","wikidata":"https://www.wikidata.org/wiki/Q17079427","display_name":"Identity (music)","level":2,"score":0.4764814078807831},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.4314606785774231},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.4084039628505707},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.4074741005897522},{"id":"https://openalex.org/C53553401","wikidata":"https://www.wikidata.org/wiki/Q47307","display_name":"Genealogy","level":1,"score":0.3974447548389435},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.3336293697357178},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.32423311471939087},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.321904718875885},{"id":"https://openalex.org/C54355233","wikidata":"https://www.wikidata.org/wiki/Q7162","display_name":"Genetics","level":1,"score":0.2153300940990448},{"id":"https://openalex.org/C95457728","wikidata":"https://www.wikidata.org/wiki/Q309","display_name":"History","level":0,"score":0.20977053046226501},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.17851072549819946},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.09049665927886963},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.08827456831932068},{"id":"https://openalex.org/C121332964","wikidata":"https://www.wikidata.org/wiki/Q413","display_name":"Physics","level":0,"score":0.0},{"id":"https://openalex.org/C1491633281","wikidata":"https://www.wikidata.org/wiki/Q7868","display_name":"Cell","level":2,"score":0.0},{"id":"https://openalex.org/C24890656","wikidata":"https://www.wikidata.org/wiki/Q82811","display_name":"Acoustics","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"mag:2188649878","doi":null,"is_oa":false,"landing_page_url":"https://link.springer.com/content/pdf/10.1186/gm511.pdf","pdf_url":null,"source":null,"license":null,"license_id":null,"version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":null}],"best_oa_location":null,"sustainable_development_goals":[],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":5,"referenced_works":["https://openalex.org/W1972616856","https://openalex.org/W2048538618","https://openalex.org/W2121158677","https://openalex.org/W2168610667","https://openalex.org/W2169873962"],"related_works":["https://openalex.org/W2157536368","https://openalex.org/W2114188237","https://openalex.org/W3126697748","https://openalex.org/W4253097163","https://openalex.org/W7099450039","https://openalex.org/W4231227822","https://openalex.org/W2141022068","https://openalex.org/W2332026668","https://openalex.org/W1964777483","https://openalex.org/W4205416854"],"abstract_inverted_index":{"Cinnamon":[0],"S":[1],"Bloss":[2],"Coinciding":[3],"with":[4,34,188,218,260,320],"the":[5,8,12,35,41,45,54,85,117,135,143,166,169,175,180,185,219,231,234,249,271,281,291,296,299,310,315,321,367,374,390,395,402,436],"publication":[6,148],"of":[7,11,23,37,87,119,125,134,142,149,154,168,174,179,233,236,239,273,293,298,309,377,389,404],"genome":[9,137,268,301,348],"sequence":[10,69],"HeLa":[13,46,136,274,300],"cancer":[14],"cell":[15,48],"line":[16,49],"last":[17],"summer":[18],"[1],":[19],"US":[20],"National":[21],"Institutes":[22],"Health":[24],"(NIH)":[25],"administrators":[26],"announced":[27],"that":[28,65,128,150,283,366,384,394],"they":[29],"had":[30],"been":[31,202],"working":[32],"closely":[33],"family":[36,86,190,198,221,246,363,391,400,444],"Henrietta":[38],"Lacks":[39,89,186,220,285,322],"[2],":[40],"woman":[42],"from":[43,360,379,441],"whom":[44],"immortal":[47],"was":[50],"derived,":[51],"to":[52,99,222,230,257,262,338,342,346,352,373,409,423,430],"address":[53,223],"family\u2019s":[55,368],"concerns":[56,369],"regarding":[57],"privacy":[58],"and":[59,103,138,161,171,248,267,278,280,314,351,428],"informed":[60],"consent.":[61,411],"NIH":[62,209],"officials":[63],"noted":[64],"\u2018the":[66],"full":[67],"[HeLa]":[68],"data":[70,144,181,243,263,434],"could":[71,94],"potentially":[72],"uncover":[73],"unwanted":[74,92],"information":[75,93,396],"about":[76,331,415],"people":[77],"whose":[78],"identity":[79,111],"is":[80,196,302,397],"widely":[81],"known\u2019":[82],"-n":[83],"amely":[84],"Ms":[88,284,361,380],"[2].":[90],"Such":[91],"include":[95],"disease":[96],"risks,":[97],"response":[98],"drugs,":[100],"ancestral":[101],"roots,":[102],"in":[104,123,254,276,307,417,435],"some":[105,387],"cases":[106],"an":[107,240],"individual\u2019":[108],"sa":[109],"ctual":[110],"[3].":[112],"This":[113,412],"article":[114],"followed":[115],"on":[116,157,244],"heels":[118],"another":[120,343],"study":[121,170],"published":[122,203],"March":[124],"this":[126,255,325],"year":[127],"likewise":[129],"presented":[130],"a":[131,152,214,304,318,328,336],"detailed":[132],"account":[133],"included":[139],"public":[140,172,237,437],"posting":[141,178],"[4].":[145],"Days":[146],"after":[147],"article,":[151],"firestorm":[153],"commentary":[155],"erupted":[156],"social":[158],"media":[159],"[5,6]":[160],"formal":[162],"news":[163],"outlets,":[164],"questioning":[165],"ethics":[167],"deposition":[173],"data.":[176,357],"The":[177,208,358],"also":[182,326,392],"reportedly":[183],"upset":[184],"family,":[187],"one":[189],"member":[191,364],"quoted":[192],"as":[193],"saying,":[194],"\u2018That":[195],"private":[197],"information\u2026It":[199],"shouldn\u2019t":[200],"have":[201,335,421,424],"without":[204],"our":[205],"consent\u2019":[206],"[7].":[207],"responded":[210],"by":[211],"entering":[212],"into":[213],"much":[215],"needed":[216],"dialogue":[217],"these":[224],"concerns.":[225],"These":[226],"events":[227],"call":[228],"attention":[229],"issue":[232,330],"impact":[235],"release":[238,354],"individual\u2019s":[241],"identified":[242,356,433],"biological":[245,333],"members,":[247],"need":[250,316],"for":[251,290,317],"empirical":[252],"research":[253,277],"area":[256],"inform":[258],"policy-making":[259],"regard":[261],"sharing.":[264],"Biological":[265],"relatives":[266,334],"sequencing":[269,297,349],"Given":[270],"ubiquity":[272],"cells":[275],"medicine":[279],"fact":[282],"herself":[286],"never":[287],"gave":[288],"consent":[289,378,440],"use":[292,403],"her":[294],"tissues,":[295],"clearly":[303],"unique":[305],"case":[306],"terms":[308],"ethical":[311],"issues":[312],"raised":[313],"partnership":[319],"family.":[323],"However,":[324],"raises":[327,413],"general":[329],"whether":[332],"\u2018right\u2019":[337],"refuse,":[339],"or":[340],"consent,":[341],"person\u2019s":[344],"desire":[345],"undergo":[347],"themselves,":[350],"publicly":[353],"their":[355,398,410,425,432],"quote":[359],"Lacks\u2019":[362],"implies":[365],"are":[370],"not":[371],"confined":[372],"initial":[375],"lack":[376],"Lacks.":[381],"It":[382],"appears":[383],"at":[385],"least":[386],"members":[388],"feel":[393],"\u2018private":[399],"information\u2019":[401],"which":[405],"should":[406],"be":[407],"subject":[408],"questions":[414],"individuals":[416],"other":[418],"studies":[419],"who":[420],"consented":[422],"genomes":[426],"sequenced":[427],"agreed":[429],"put":[431],"domain.":[438],"Should":[439],"those":[442],"individuals\u2019":[443]},"counts_by_year":[],"updated_date":"2025-11-06T04:12:42.849631","created_date":"2016-06-24T00:00:00"}