{"id":"https://openalex.org/W2062317469","doi":"https://doi.org/10.1016/j.jalz.2014.05.1595","title":"P4\u2010080: DISCLOSURE OF INDIVIDUAL RESEARCH RESULTS TO COGNITIVELY NORMAL RESEARCH PARTICIPANTS","display_name":"P4\u2010080: DISCLOSURE OF INDIVIDUAL RESEARCH RESULTS TO COGNITIVELY NORMAL RESEARCH PARTICIPANTS","publication_year":2014,"publication_date":"2014-07-01","ids":{"openalex":"https://openalex.org/W2062317469","doi":"https://doi.org/10.1016/j.jalz.2014.05.1595","mag":"2062317469"},"language":"en","primary_location":{"id":"doi:10.1016/j.jalz.2014.05.1595","doi":"https://doi.org/10.1016/j.jalz.2014.05.1595","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.jalz.2014.05.1595","pdf_url":null,"source":{"id":"https://openalex.org/S108427512","display_name":"Alzheimer s & Dementia","issn_l":"1552-5260","issn":["1552-5260","1552-5279"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-3","ki-jl-3","medline","norway-1","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Alzheimer's &amp; Dementia","raw_type":"journal-article"},"volume":null,"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/A5027691059","display_name":"Jonathan Gooblar","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I204465549","display_name":"Washington University in St. Louis","ror":"https://ror.org/01yc7t268","country_code":"US","type":"education","lineage":["https://openalex.org/I204465549"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jonathan Gooblar","raw_affiliation_strings":["Washington University St. Louis Missouri United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Washington University St. Louis Missouri United States","institution_ids":["https://openalex.org/I204465549"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5023232121","display_name":"Catherine M. Roe","orcid":"https://orcid.org/0000-0002-1405-0485","observed_orcids":["https://orcid.org/0000-0002-1405-0485"]},"institutions":[{"id":"https://openalex.org/I204465549","display_name":"Washington University in St. Louis","ror":"https://ror.org/01yc7t268","country_code":"US","type":"education","lineage":["https://openalex.org/I204465549"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Catherine M. Roe","raw_affiliation_strings":["Washington University School of Medicine St. Louis Missouri United States","Washington University School of Medicine; St. Louis, Missouri, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Washington University School of Medicine St. Louis Missouri United States","institution_ids":["https://openalex.org/I204465549"]},{"raw_affiliation_string":"Washington University School of Medicine; St. Louis, Missouri, United States","institution_ids":["https://openalex.org/I204465549"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5043108899","display_name":"Natalie J. Selsor","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I204465549","display_name":"Washington University in St. Louis","ror":"https://ror.org/01yc7t268","country_code":"US","type":"education","lineage":["https://openalex.org/I204465549"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Natalie J. Selsor","raw_affiliation_strings":["Washington University St. Louis Missouri United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Washington University St. Louis Missouri United States","institution_ids":["https://openalex.org/I204465549"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5073919747","display_name":"Matthew J. Gabel","orcid":"https://orcid.org/0000-0001-6886-2828","observed_orcids":["https://orcid.org/0000-0001-6886-2828"]},"institutions":[{"id":"https://openalex.org/I204465549","display_name":"Washington University in St. Louis","ror":"https://ror.org/01yc7t268","country_code":"US","type":"education","lineage":["https://openalex.org/I204465549"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Matthew Gabel","raw_affiliation_strings":["Washington University St. Louis Missouri United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Washington University St. Louis Missouri United States","institution_ids":["https://openalex.org/I204465549"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5063630764","display_name":"John C. Morris","orcid":"https://orcid.org/0000-0001-9820-5618","observed_orcids":["https://orcid.org/0000-0001-9820-5618","https://orcid.org/0000-0001-8068-9271"]},"institutions":[{"id":"https://openalex.org/I204465549","display_name":"Washington University in St. Louis","ror":"https://ror.org/01yc7t268","country_code":"US","type":"education","lineage":["https://openalex.org/I204465549"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"John Morris","raw_affiliation_strings":["Washington University St. Louis Missouri United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Washington University St. Louis Missouri United States","institution_ids":["https://openalex.org/I204465549"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":[],"corresponding_institution_ids":["https://openalex.org/I204465549"],"apc_list":{"value":4200,"currency":"USD","value_usd":4200},"apc_paid":null,"fwci":0.6603,"has_fulltext":false,"cited_by_count":3,"citation_normalized_percentile":{"value":0.74562264,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":96},"biblio":{"volume":"10","issue":"4S_Part_22","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":0.9413999915122986,"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":0.9413999915122986,"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/T10009","display_name":"Dementia and Cognitive Impairment Research","score":0.054499998688697815,"subfield":{"id":"https://openalex.org/subfields/2738","display_name":"Psychiatry and Mental 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/T10086","display_name":"Alzheimer's disease research and treatments","score":0.0017999999690800905,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/alzheimer-s-disease","display_name":"Alzheimer's disease","score":0.7730000019073486}],"concepts":[{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5408980846405029},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5146397352218628},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.503368079662323},{"id":"https://openalex.org/C105776082","wikidata":"https://www.wikidata.org/wiki/Q617473","display_name":"Likert scale","level":2,"score":0.48216480016708374},{"id":"https://openalex.org/C2780665704","wikidata":"https://www.wikidata.org/wiki/Q959298","display_name":"Intervention (counseling)","level":2,"score":0.46335721015930176},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4623042643070221},{"id":"https://openalex.org/C2781197716","wikidata":"https://www.wikidata.org/wiki/Q864574","display_name":"Biomarker","level":2,"score":0.45653730630874634},{"id":"https://openalex.org/C502991105","wikidata":"https://www.wikidata.org/wiki/Q5133849","display_name":"Clinical research","level":2,"score":0.4287063181400299},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.23683947324752808},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.21230152249336243},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.19156965613365173},{"id":"https://openalex.org/C185592680","wikidata":"https://www.wikidata.org/wiki/Q2329","display_name":"Chemistry","level":0,"score":0.0},{"id":"https://openalex.org/C55493867","wikidata":"https://www.wikidata.org/wiki/Q7094","display_name":"Biochemistry","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.jalz.2014.05.1595","doi":"https://doi.org/10.1016/j.jalz.2014.05.1595","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.jalz.2014.05.1595","pdf_url":null,"source":{"id":"https://openalex.org/S108427512","display_name":"Alzheimer s & Dementia","issn_l":"1552-5260","issn":["1552-5260","1552-5279"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-3","ki-jl-3","medline","norway-1","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Alzheimer's &amp; Dementia","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":0.9391000270843506,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"}],"sustainable_development_goals_aurora":[{"score":0.5,"id":"https://metadata.un.org/sdg/4","display_name":"Quality education"}],"study_designs":[{"id":"https://openalex.org/study-designs/clinical-trial","display_name":"Clinical Trial"}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W1805220220","https://openalex.org/W4385814962","https://openalex.org/W4401189232","https://openalex.org/W3111551565","https://openalex.org/W4399678395","https://openalex.org/W4390200390","https://openalex.org/W2550587245","https://openalex.org/W3111534771","https://openalex.org/W3129723944","https://openalex.org/W7160378984"],"abstract_inverted_index":{"A":[0],"preclinical":[1],"stage":[2],"of":[3,19,29,57,88,99,107,141,192,229,247,332],"Alzheimer's":[4,74],"disease":[5],"(AD)":[6],"can":[7],"be":[8],"identified":[9],"with":[10,330],"biological":[11],"indicators":[12],"(biomarkers)":[13],"years":[14],"prior":[15],"to":[16,36,50,124,133,154,162,178,204,342],"the":[17,27,72,96,152,176,196,202,281,296],"onset":[18],"AD":[20,100,170,249,267],"symptoms.":[21],"However,":[22],"little":[23],"is":[24,48],"known":[25],"about":[26,138,169,183,326,338],"effects":[28],"disclosing":[30],"biomarker":[31],"and":[32,44,53,151,210,252,272],"other":[33],"research":[34,38,59,90,144,208,217,226,306,312,320,349],"results":[35,187,227,307],"asymptomatic":[37],"participants.":[39],"To":[40],"prepare":[41],"for":[42,149,236],"prevention":[43],"treatment":[45,232],"trials,":[46],"it":[47],"imperative":[49],"understand":[51],"perceptions":[52],"implications":[54,148],"surrounding":[55],"disclosure":[56,87,331],"individual":[58,89,156,186,305,348],"results.":[60,218,350],"Cognitively":[61],"normal":[62],"older":[63],"adults":[64],"(N=103)":[65],"enrolled":[66],"in":[67,213,224,243,265,295,302,317,346],"longitudinal":[68],"aging":[69],"studies":[70],"at":[71,121],"Knight":[73],"Disease":[75],"Research":[76],"Center":[77],"(KADRC)":[78],"were":[79,111,130,174,259],"given":[80],"a":[81,114,163,199,275,283],"pre-intervention":[82],"survey":[83,177],"on":[84,113,159],"attitudes":[85,182],"toward":[86],"results,":[91,145,321],"including":[92],"those":[93],"that":[94,198,254,288],"detect":[95],"molecular":[97],"pathology":[98],"(eg,":[101],"amyloid":[102],"imaging;":[103],"cerebrospinal":[104],"fluid":[105],"assays":[106],"AD-related":[108],"proteins).":[109],"Responses":[110],"indicated":[112,211,221,287],"Likert":[115],"scale":[116],"ranging":[117],"from":[118],"1":[119],"(not":[120],"all":[122,193],"interested)":[123],"5":[125],"(extremely":[126],"interested).":[127],"Next,":[128],"participants":[129,194,290,313,337],"randomly":[131],"assigned":[132],"an":[134,266],"education":[135,297],"intervention":[136,298,335],"(N=56)":[137],"potential":[139,235,327],"risks":[140],"learning":[142,184,214,225,303,318,347],"one's":[143,185],"such":[146],"as":[147],"insurability,":[150],"inability":[153],"predict":[155],"outcomes":[157],"based":[158],"biomarkers,":[160],"or":[161,241],"general":[164],"information":[165],"control":[166],"group":[167,299],"(N=47)":[168],"research.":[171],"Participants":[172,219],"then":[173],"re-administered":[175],"determine":[179],"whether":[180],"initial":[181],"had":[188],"changed.":[189],"Initially,":[190],"97%":[191],"endorsed":[195],"view":[197],"person":[200],"has":[201],"right":[203],"access":[205],"his/her":[206],"own":[207,216],"data":[209],"interest":[212,223,345],"their":[215,304,319],"initially":[220],"strong":[222],"regardless":[228],"available":[230],"effective":[231],"(M":[233,239,250,270,278],"=4.3),":[234],"false":[237],"positives/negatives":[238],"=4.1),":[240],"utility":[242],"determining":[244],"exact":[245,285],"risk":[246],"developing":[248],"=4.2),":[251],"reported":[253],"if":[255],"they":[256,258,261],"learned":[257],"biomarker-positive,":[260],"would":[262,273],"likely":[263],"participate":[264],"drug":[268],"trial":[269],"=4.1)":[271],"adopt":[274],"healthier":[276],"lifestyle":[277],"=4.1).":[279],"Following":[280],"intervention,":[282],"Fisher's":[284],"test":[286],"fewer":[289],"(N=42":[291],"vs.":[292],"N=51":[293],"pre-intervention)":[294],"remained":[300],"interested":[301,316],"(p":[308],"=":[309],".04).":[310],"Asymptomatic":[311],"are":[314],"overwhelmingly":[315],"despite":[322],"being":[323],"directly":[324],"asked":[325],"problems":[328,340],"associated":[329],"biomarkers.":[333],"An":[334],"educating":[336],"these":[339],"appeared":[341],"somewhat":[343],"temper":[344]},"counts_by_year":[{"year":2018,"cited_by_count":1},{"year":2017,"cited_by_count":2}],"updated_date":"2026-10-16T09:59:22.235173","created_date":"2016-06-24T00:00:00"}
