{"id":"https://openalex.org/W4414488855","doi":"https://doi.org/10.1145/3757567","title":"Collective Consent: Who Needs to Consent to the Donation of Data Representing Multiple People?","display_name":"Collective Consent: Who Needs to Consent to the Donation of Data Representing Multiple People?","publication_year":2025,"publication_date":"2025-10-16","ids":{"openalex":"https://openalex.org/W4414488855","doi":"https://doi.org/10.1145/3757567"},"language":"en","primary_location":{"id":"doi:10.1145/3757567","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3757567","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},"type":"article","indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.1145/3757567","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5093135948","display_name":"Emma Walquist","orcid":"https://orcid.org/0009-0004-5998-0135"},"institutions":[{"id":"https://openalex.org/I4210092198","display_name":"University of Michigan\u2013Flint","ror":"https://ror.org/01c3xc117","country_code":"US","type":"education","lineage":["https://openalex.org/I4210092198"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Emma Walquist","raw_affiliation_strings":["University of Michigan-Flint, Flint, Michigan, USA"],"raw_orcid":"https://orcid.org/0009-0004-5998-0135","affiliations":[{"raw_affiliation_string":"University of Michigan-Flint, Flint, Michigan, USA","institution_ids":["https://openalex.org/I4210092198"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5035009605","display_name":"Isha Datey","orcid":"https://orcid.org/0000-0002-1743-5161"},"institutions":[{"id":"https://openalex.org/I177721651","display_name":"Oakland University","ror":"https://ror.org/01ythxj32","country_code":"US","type":"education","lineage":["https://openalex.org/I177721651"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Isha Datey","raw_affiliation_strings":["Oakland University, Rochester, Michigan, USA"],"raw_orcid":"https://orcid.org/0000-0002-1743-5161","affiliations":[{"raw_affiliation_string":"Oakland University, Rochester, Michigan, USA","institution_ids":["https://openalex.org/I177721651"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5093135947","display_name":"Wenqi Zheng","orcid":"https://orcid.org/0000-0002-0650-044X"},"institutions":[{"id":"https://openalex.org/I177721651","display_name":"Oakland University","ror":"https://ror.org/01ythxj32","country_code":"US","type":"education","lineage":["https://openalex.org/I177721651"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Wenqi Zheng","raw_affiliation_strings":["Oakland University, Rochester, Michigan, USA"],"raw_orcid":"https://orcid.org/0000-0002-0650-044X","affiliations":[{"raw_affiliation_string":"Oakland University, Rochester, Michigan, USA","institution_ids":["https://openalex.org/I177721651"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5060955674","display_name":"Xiangyu Zhou","orcid":"https://orcid.org/0009-0000-0776-8045"},"institutions":[{"id":"https://openalex.org/I185443292","display_name":"Wayne State University","ror":"https://ror.org/01070mq45","country_code":"US","type":"education","lineage":["https://openalex.org/I185443292"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Xiangyu Zhou","raw_affiliation_strings":["Wayne State University, Detroit, Michigan, USA"],"raw_orcid":"https://orcid.org/0009-0000-0776-8045","affiliations":[{"raw_affiliation_string":"Wayne State University, Detroit, Michigan, USA","institution_ids":["https://openalex.org/I185443292"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5037221806","display_name":"Kelly Berishaj","orcid":"https://orcid.org/0009-0002-5646-9580"},"institutions":[{"id":"https://openalex.org/I177721651","display_name":"Oakland University","ror":"https://ror.org/01ythxj32","country_code":"US","type":"education","lineage":["https://openalex.org/I177721651"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Kelly Berishaj","raw_affiliation_strings":["Oakland University, Rochester, Michigan, USA"],"raw_orcid":"https://orcid.org/0009-0002-5646-9580","affiliations":[{"raw_affiliation_string":"Oakland University, Rochester, Michigan, USA","institution_ids":["https://openalex.org/I177721651"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5073138984","display_name":"Melissa M. McDonald","orcid":"https://orcid.org/0000-0002-5738-7651"},"institutions":[{"id":"https://openalex.org/I177721651","display_name":"Oakland University","ror":"https://ror.org/01ythxj32","country_code":"US","type":"education","lineage":["https://openalex.org/I177721651"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Melissa McDonald","raw_affiliation_strings":["Oakland University, Rochester, Michigan, USA"],"raw_orcid":"https://orcid.org/0000-0002-5738-7651","affiliations":[{"raw_affiliation_string":"Oakland University, Rochester, Michigan, USA","institution_ids":["https://openalex.org/I177721651"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5028273384","display_name":"Michele R. Parkhill","orcid":"https://orcid.org/0000-0002-4839-8789"},"institutions":[{"id":"https://openalex.org/I177721651","display_name":"Oakland University","ror":"https://ror.org/01ythxj32","country_code":"US","type":"education","lineage":["https://openalex.org/I177721651"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Michele Parkhill","raw_affiliation_strings":["Oakland University, Rochester, Michigan, USA"],"raw_orcid":"https://orcid.org/0000-0002-4839-8789","affiliations":[{"raw_affiliation_string":"Oakland University, Rochester, Michigan, USA","institution_ids":["https://openalex.org/I177721651"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5009256505","display_name":"Dongxiao Zhu","orcid":"https://orcid.org/0000-0002-0225-7817"},"institutions":[{"id":"https://openalex.org/I185443292","display_name":"Wayne State University","ror":"https://ror.org/01070mq45","country_code":"US","type":"education","lineage":["https://openalex.org/I185443292"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Dongxiao Zhu","raw_affiliation_strings":["Wayne State University, Detroit, Michigan, USA"],"raw_orcid":"https://orcid.org/0000-0002-0225-7817","affiliations":[{"raw_affiliation_string":"Wayne State University, Detroit, Michigan, USA","institution_ids":["https://openalex.org/I185443292"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5033234764","display_name":"Douglas Zytko","orcid":"https://orcid.org/0000-0002-6854-5336"},"institutions":[{"id":"https://openalex.org/I4210092198","display_name":"University of Michigan\u2013Flint","ror":"https://ror.org/01c3xc117","country_code":"US","type":"education","lineage":["https://openalex.org/I4210092198"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Douglas Zytko","raw_affiliation_strings":["University of Michigan-Flint, Flint, Michigan, USA"],"raw_orcid":"https://orcid.org/0000-0002-6854-5336","affiliations":[{"raw_affiliation_string":"University of Michigan-Flint, Flint, Michigan, USA","institution_ids":["https://openalex.org/I4210092198"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":9,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":5.4986,"has_fulltext":true,"cited_by_count":4,"citation_normalized_percentile":{"value":0.96040475,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":91,"max":99},"biblio":{"volume":"9","issue":"7","first_page":"1","last_page":"30"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T13048","display_name":"Patient Dignity and Privacy","score":0.9972000122070312,"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/T13048","display_name":"Patient Dignity and Privacy","score":0.9972000122070312,"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/T10582","display_name":"Ethics in Clinical Research","score":0.9962000250816345,"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/T11388","display_name":"Grief, Bereavement, and Mental Health","score":0.992900013923645,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/donation","display_name":"Donation","score":0.7786999940872192},{"id":"https://openalex.org/keywords/informed-consent","display_name":"Informed consent","score":0.5645999908447266},{"id":"https://openalex.org/keywords/data-collection","display_name":"Data collection","score":0.44749999046325684},{"id":"https://openalex.org/keywords/organ-donation","display_name":"Organ donation","score":0.42399999499320984},{"id":"https://openalex.org/keywords/confidentiality","display_name":"Confidentiality","score":0.35910001397132874},{"id":"https://openalex.org/keywords/empirical-research","display_name":"Empirical research","score":0.335099995136261}],"concepts":[{"id":"https://openalex.org/C2775933685","wikidata":"https://www.wikidata.org/wiki/Q1124860","display_name":"Donation","level":2,"score":0.7786999940872192},{"id":"https://openalex.org/C68122502","wikidata":"https://www.wikidata.org/wiki/Q764527","display_name":"Informed consent","level":3,"score":0.5645999908447266},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5206999778747559},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.5163000226020813},{"id":"https://openalex.org/C133462117","wikidata":"https://www.wikidata.org/wiki/Q4929239","display_name":"Data collection","level":2,"score":0.44749999046325684},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.43050000071525574},{"id":"https://openalex.org/C2994510829","wikidata":"https://www.wikidata.org/wiki/Q849032","display_name":"Organ donation","level":3,"score":0.42399999499320984},{"id":"https://openalex.org/C71745522","wikidata":"https://www.wikidata.org/wiki/Q2476929","display_name":"Confidentiality","level":2,"score":0.35910001397132874},{"id":"https://openalex.org/C120936955","wikidata":"https://www.wikidata.org/wiki/Q2155640","display_name":"Empirical research","level":2,"score":0.335099995136261},{"id":"https://openalex.org/C2994210853","wikidata":"https://www.wikidata.org/wiki/Q673281","display_name":"Sexual assault","level":4,"score":0.32030001282691956},{"id":"https://openalex.org/C178005623","wikidata":"https://www.wikidata.org/wiki/Q308859","display_name":"Anonymity","level":2,"score":0.3125},{"id":"https://openalex.org/C169093310","wikidata":"https://www.wikidata.org/wiki/Q3702971","display_name":"Personally identifiable information","level":2,"score":0.3027999997138977},{"id":"https://openalex.org/C160295073","wikidata":"https://www.wikidata.org/wiki/Q1137616","display_name":"Opt-in email","level":2,"score":0.29170000553131104},{"id":"https://openalex.org/C2780291661","wikidata":"https://www.wikidata.org/wiki/Q1368455","display_name":"Opt-out","level":2,"score":0.2888999879360199},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.2881999909877777},{"id":"https://openalex.org/C69360830","wikidata":"https://www.wikidata.org/wiki/Q1172237","display_name":"Data Protection Act 1998","level":2,"score":0.2567000091075897}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.1145/3757567","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3757567","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},{"id":"pmh:oai:deepblue.lib.umich.edu:2027.42/196706","is_oa":true,"landing_page_url":"https://hdl.handle.net/2027.42/196706","pdf_url":"http://deepblue.lib.umich.edu/bitstream/2027.42/196706/1/WALQUIST_CSCW_2025_preprint.pdf","source":{"id":"https://openalex.org/S4306400393","display_name":"Deep Blue (University of Michigan)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I27837315","host_organization_name":"University of Michigan","host_organization_lineage":["https://openalex.org/I27837315"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Preprint"}],"best_oa_location":{"id":"doi:10.1145/3757567","is_oa":true,"landing_page_url":"https://doi.org/10.1145/3757567","pdf_url":null,"source":{"id":"https://openalex.org/S4210183893","display_name":"Proceedings of the ACM on Human-Computer Interaction","issn_l":"2573-0142","issn":["2573-0142"],"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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the ACM on Human-Computer Interaction","raw_type":"journal-article"},"sustainable_development_goals":[],"awards":[{"id":"https://openalex.org/G4697810100","display_name":null,"funder_award_id":"2211896","funder_id":"https://openalex.org/F4320306076","funder_display_name":"National Science Foundation"},{"id":"https://openalex.org/G6818766486","display_name":null,"funder_award_id":"2339431","funder_id":"https://openalex.org/F4320306076","funder_display_name":"National Science Foundation"},{"id":"https://openalex.org/G7003463299","display_name":null,"funder_award_id":"2401775","funder_id":"https://openalex.org/F4320306076","funder_display_name":"National Science Foundation"},{"id":"https://openalex.org/G8274219849","display_name":null,"funder_award_id":"2211896, 2401775, 2339431, and 2211897","funder_id":"https://openalex.org/F4320306076","funder_display_name":"National Science Foundation"}],"funders":[{"id":"https://openalex.org/F4320306076","display_name":"National Science Foundation","ror":"https://ror.org/021nxhr62"}],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":110,"referenced_works":["https://openalex.org/W72496981","https://openalex.org/W964600994","https://openalex.org/W1979290264","https://openalex.org/W2036663310","https://openalex.org/W2039142735","https://openalex.org/W2047295354","https://openalex.org/W2060884034","https://openalex.org/W2065548151","https://openalex.org/W2075583240","https://openalex.org/W2080318345","https://openalex.org/W2109407406","https://openalex.org/W2133084001","https://openalex.org/W2288977759","https://openalex.org/W2300040953","https://openalex.org/W2315831403","https://openalex.org/W2402859381","https://openalex.org/W2610193927","https://openalex.org/W2727323833","https://openalex.org/W2757255553","https://openalex.org/W2768481906","https://openalex.org/W2795565809","https://openalex.org/W2899391355","https://openalex.org/W2908589171","https://openalex.org/W2908687141","https://openalex.org/W2909353938","https://openalex.org/W2910077621","https://openalex.org/W2910411041","https://openalex.org/W2914743775","https://openalex.org/W2939156681","https://openalex.org/W2941399919","https://openalex.org/W2950617801","https://openalex.org/W2950792650","https://openalex.org/W2952898450","https://openalex.org/W2954893098","https://openalex.org/W2973063917","https://openalex.org/W2980929287","https://openalex.org/W2990101668","https://openalex.org/W2991501294","https://openalex.org/W3000190958","https://openalex.org/W3004609204","https://openalex.org/W3010141963","https://openalex.org/W3015767612","https://openalex.org/W3029832204","https://openalex.org/W3040472729","https://openalex.org/W3040583727","https://openalex.org/W3044576044","https://openalex.org/W3091139943","https://openalex.org/W3094173114","https://openalex.org/W3106386337","https://openalex.org/W3111747728","https://openalex.org/W3124701710","https://openalex.org/W3141263172","https://openalex.org/W3157673024","https://openalex.org/W3158691471","https://openalex.org/W3163524335","https://openalex.org/W3177955518","https://openalex.org/W3183150001","https://openalex.org/W3206255199","https://openalex.org/W3207701354","https://openalex.org/W4220884029","https://openalex.org/W4224557604","https://openalex.org/W4225117601","https://openalex.org/W4225156763","https://openalex.org/W4225163363","https://openalex.org/W4229486412","https://openalex.org/W4283362431","https://openalex.org/W4284961432","https://openalex.org/W4288086187","https://openalex.org/W4289445728","https://openalex.org/W4295259656","https://openalex.org/W4296188522","https://openalex.org/W4297156532","https://openalex.org/W4297534143","https://openalex.org/W4297534144","https://openalex.org/W4307530912","https://openalex.org/W4308426093","https://openalex.org/W4313331790","https://openalex.org/W4315749638","https://openalex.org/W4317525596","https://openalex.org/W4317671378","https://openalex.org/W4318542983","https://openalex.org/W4320560155","https://openalex.org/W4322500410","https://openalex.org/W4322772446","https://openalex.org/W4366549582","https://openalex.org/W4366549958","https://openalex.org/W4366550016","https://openalex.org/W4366594850","https://openalex.org/W4377293909","https://openalex.org/W4385441618","https://openalex.org/W4386291522","https://openalex.org/W4387328585","https://openalex.org/W4387328642","https://openalex.org/W4387344806","https://openalex.org/W4387606046","https://openalex.org/W4387993500","https://openalex.org/W4388277021","https://openalex.org/W4393308165","https://openalex.org/W4395960746","https://openalex.org/W4396230904","https://openalex.org/W4396827143","https://openalex.org/W4396832025","https://openalex.org/W4396833508","https://openalex.org/W4396833718","https://openalex.org/W4399667917","https://openalex.org/W4403576073","https://openalex.org/W4403576090","https://openalex.org/W4404173068","https://openalex.org/W4405181765","https://openalex.org/W4409749445"],"related_works":[],"abstract_inverted_index":{"Data":[0],"donation":[1,96,136,148],"is":[2,85],"a":[3],"growing":[4],"form":[5],"of":[6,16,81,94,149],"personal":[7,119],"data":[8,18,29,34,95,135],"collection":[9],"that":[10,79,127],"foregrounds":[11],"consent":[12,27,80,109,129],"and":[13,48,118],"conscious":[14],"participation":[15],"the":[17,33,91,122],"donor.":[19],"There":[20],"remains":[21],"little":[22],"guidance":[23],"on":[24,42],"who":[25,54],"must":[26],"to":[28,56,108,110,146],"donation,":[30,112],"particularly":[31],"when":[32],"represents":[35],"multiple":[36],"people.":[37],"We":[38],"provide":[39],"empirical":[40],"perspectives":[41],"this":[43],"question":[44],"through":[45],"in-situ":[46],"observation":[47],"interviews":[49],"(N=18)":[50],"with":[51,60],"online":[52],"daters":[53],"chose":[55],"donate":[57],"messaging":[58,83,106],"interactions":[59],"potential":[61],"sexual":[62,65],"partners":[63,107],"for":[64,75,101,115],"violence":[66],"research.":[67],"Findings":[68,125],"elucidate":[69],"two":[70],"diverging":[71],"perspectives.":[72],"Participants":[73,99],"advocating":[74,100],"''unilateral":[76],"consent''":[77,103],"argued":[78],"their":[82],"partner":[84],"not":[86,140],"necessary,":[87],"in":[88,134],"part,":[89],"because":[90],"anticipated":[92],"benefit":[93],"superseded":[97],"consent.":[98],"''collective":[102],"wanted":[104],"both":[105],"its":[111],"citing":[113],"concerns":[114],"privacy":[116],"of,":[117],"relationships":[120],"with,":[121],"other":[123],"person.":[124],"suggest":[126],"collective":[128],"interfaces":[130],"should":[131],"be":[132],"incorporated":[133],"platforms,":[137],"even":[138],"if":[139],"strictly":[141],"required":[142],"by":[143],"legal":[144],"regulation,":[145],"improve":[147],"multi-person":[150],"data.":[151]},"counts_by_year":[{"year":2026,"cited_by_count":3},{"year":2025,"cited_by_count":1}],"updated_date":"2026-06-13T07:54:00.901334","created_date":"2025-10-10T00:00:00"}