{"id":"https://openalex.org/W20957300","doi":null,"title":"Comparing Self-Referred and Systematically Recruited Participants in Genetic Susceptibility Testing Research: Implications for Uptake and Responses to Results.","display_name":"Comparing Self-Referred and Systematically Recruited Participants in Genetic Susceptibility Testing Research: Implications for Uptake and Responses to Results.","publication_year":2012,"publication_date":"2012-01-01","ids":{"openalex":"https://openalex.org/W20957300","mag":"20957300"},"language":"en","primary_location":{"id":"pmh:oai:deepblue.lib.umich.edu:2027.42/94095","doi":null,"is_oa":true,"landing_page_url":"https://hdl.handle.net/2027.42/94095","pdf_url":"https://hdl.handle.net/2027.42/94095","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,"listed_in":[],"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":"Thesis"},"volume":null,"type":"dissertation","is_traditional":true,"indexed_in":[],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://hdl.handle.net/2027.42/94095","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5039511680","display_name":"Kurt Derek Christensen","orcid":"https://orcid.org/0000-0003-4068-776X","observed_orcids":["https://orcid.org/0000-0003-4068-776X"]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Kurt D. Christensen","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5039511680"],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":null,"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":0.8535000085830688,"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":0.8535000085830688,"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":0.03629999980330467,"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/T10261","display_name":"Genetic Associations and Epidemiology","score":0.017000000923871994,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/genetic-susceptibility-testing","display_name":"genetic susceptibility testing","score":0.9480000138282776},{"id":"https://openalex.org/keywords/alzheimer-s-disease","display_name":"Alzheimer's disease","score":0.8700000047683716},{"id":"https://openalex.org/keywords/testing-uptake","display_name":"testing uptake","score":0.7160000205039978},{"id":"https://openalex.org/keywords/advance-planning","display_name":"forward planning","score":0.7620000243186951},{"id":"https://openalex.org/keywords/health-behavior-change","display_name":"health behavior change","score":0.9100000262260437},{"id":"https://openalex.org/keywords/generalizability-of-research-findings","display_name":"generalizability of research findings","score":0.6460000276565552}],"concepts":[{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4536258280277252},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.37056368589401245},{"id":"https://openalex.org/C54355233","wikidata":"https://www.wikidata.org/wiki/Q7162","display_name":"Genetics","level":1,"score":0.34434008598327637},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.34072187542915344},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3370726704597473}],"mesh":[],"locations_count":2,"locations":[{"id":"pmh:oai:deepblue.lib.umich.edu:2027.42/94095","doi":null,"is_oa":true,"landing_page_url":"https://hdl.handle.net/2027.42/94095","pdf_url":"https://hdl.handle.net/2027.42/94095","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,"listed_in":[],"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":"Thesis"},{"id":"mag:20957300","doi":null,"is_oa":true,"landing_page_url":"https://hdl.handle.net/2027.42/94095","pdf_url":null,"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,"listed_in":[],"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":"Deep Blue (University of Michigan)","raw_type":null}],"best_oa_location":{"id":"pmh:oai:deepblue.lib.umich.edu:2027.42/94095","doi":null,"is_oa":true,"landing_page_url":"https://hdl.handle.net/2027.42/94095","pdf_url":"https://hdl.handle.net/2027.42/94095","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,"listed_in":[],"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":"Thesis"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":0.9537000060081482,"display_name":"Good health and well-being"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W20957300.pdf","grobid_xml":"https://content.openalex.org/works/W20957300.grobid-xml"},"referenced_works_count":290,"referenced_works":["https://openalex.org/W6115503","https://openalex.org/W98654930","https://openalex.org/W198622472","https://openalex.org/W237273213","https://openalex.org/W1277915558","https://openalex.org/W1498452057","https://openalex.org/W1504022038","https://openalex.org/W1521213094","https://openalex.org/W1539896512","https://openalex.org/W1569494747","https://openalex.org/W1572413306","https://openalex.org/W1607135210","https://openalex.org/W1690968151","https://openalex.org/W1871291000","https://openalex.org/W1919216911","https://openalex.org/W1955754585","https://openalex.org/W1955957832","https://openalex.org/W1964729842","https://openalex.org/W1965153012","https://openalex.org/W1965704156","https://openalex.org/W1966636710","https://openalex.org/W1967209301","https://openalex.org/W1967255053","https://openalex.org/W1967835992","https://openalex.org/W1969575615","https://openalex.org/W1970622491","https://openalex.org/W1970887501","https://openalex.org/W1972925620","https://openalex.org/W1973878786","https://openalex.org/W1974447956","https://openalex.org/W1974657460","https://openalex.org/W1976976636","https://openalex.org/W1977608571","https://openalex.org/W1978200201","https://openalex.org/W1978442828","https://openalex.org/W1978560369","https://openalex.org/W1981453504","https://openalex.org/W1982343866","https://openalex.org/W1982654371","https://openalex.org/W1982813521","https://openalex.org/W1983406692","https://openalex.org/W1983777759","https://openalex.org/W1983911188","https://openalex.org/W1984477277","https://openalex.org/W1984502885","https://openalex.org/W1984798263","https://openalex.org/W1985571163","https://openalex.org/W1985934014","https://openalex.org/W1986515466","https://openalex.org/W1986549431","https://openalex.org/W1987032817","https://openalex.org/W1989132633","https://openalex.org/W1989408156","https://openalex.org/W1989588381","https://openalex.org/W1990755366","https://openalex.org/W1991911208","https://openalex.org/W1992345628","https://openalex.org/W1992392577","https://openalex.org/W1992601792","https://openalex.org/W1993028117","https://openalex.org/W1993255431","https://openalex.org/W1994799450","https://openalex.org/W1995283342","https://openalex.org/W1996645883","https://openalex.org/W1996957684","https://openalex.org/W1997092577","https://openalex.org/W1997108619","https://openalex.org/W1998197289","https://openalex.org/W1998489800","https://openalex.org/W2000481591","https://openalex.org/W2000918342","https://openalex.org/W2001536716","https://openalex.org/W2001709069","https://openalex.org/W2001831870","https://openalex.org/W2002208326","https://openalex.org/W2002500133","https://openalex.org/W2003092226","https://openalex.org/W2004454910","https://openalex.org/W2005091374","https://openalex.org/W2005518396","https://openalex.org/W2006497939","https://openalex.org/W2006570211","https://openalex.org/W2006633893","https://openalex.org/W2006767491","https://openalex.org/W2007826293","https://openalex.org/W2007904810","https://openalex.org/W2008251578","https://openalex.org/W2008353026","https://openalex.org/W2008634893","https://openalex.org/W2010314085","https://openalex.org/W2010735990","https://openalex.org/W2010961833","https://openalex.org/W2013323468","https://openalex.org/W2015451662","https://openalex.org/W2015577505","https://openalex.org/W2016321386","https://openalex.org/W2017674917","https://openalex.org/W2017785078","https://openalex.org/W2017956796","https://openalex.org/W2018075776","https://openalex.org/W2018973366","https://openalex.org/W2019010710","https://openalex.org/W2019634517","https://openalex.org/W2020626671","https://openalex.org/W2021152709","https://openalex.org/W2021542248","https://openalex.org/W2021875169","https://openalex.org/W2023172075","https://openalex.org/W2023292494","https://openalex.org/W2023887405","https://openalex.org/W2025119192","https://openalex.org/W2025295318","https://openalex.org/W2029150761","https://openalex.org/W2029676249","https://openalex.org/W2030577933","https://openalex.org/W2031898710","https://openalex.org/W2032027876","https://openalex.org/W2033470581","https://openalex.org/W2034730638","https://openalex.org/W2036210716","https://openalex.org/W2038654351","https://openalex.org/W2039377789","https://openalex.org/W2040627518","https://openalex.org/W2041467022","https://openalex.org/W2041834063","https://openalex.org/W2042513808","https://openalex.org/W2046031882","https://openalex.org/W2046205654","https://openalex.org/W2046782791","https://openalex.org/W2047661575","https://openalex.org/W2047863207","https://openalex.org/W2047884413","https://openalex.org/W2048388977","https://openalex.org/W2049655125","https://openalex.org/W2049983997","https://openalex.org/W2050252039","https://openalex.org/W2050618398","https://openalex.org/W2051310544","https://openalex.org/W2052399459","https://openalex.org/W2052775041","https://openalex.org/W2053082937","https://openalex.org/W2053234558","https://openalex.org/W2055246234","https://openalex.org/W2056008497","https://openalex.org/W2056793891","https://openalex.org/W2057437077","https://openalex.org/W2057853508","https://openalex.org/W2058111723","https://openalex.org/W2060323966","https://openalex.org/W2060680720","https://openalex.org/W2061117240","https://openalex.org/W2061778204","https://openalex.org/W2064065984","https://openalex.org/W2064891444","https://openalex.org/W2065509317","https://openalex.org/W2067108324","https://openalex.org/W2067121975","https://openalex.org/W2067728044","https://openalex.org/W2068426528","https://openalex.org/W2068554443","https://openalex.org/W2068613599","https://openalex.org/W2068690814","https://openalex.org/W2072066257","https://openalex.org/W2073282625","https://openalex.org/W2073536755","https://openalex.org/W2074048861","https://openalex.org/W2076321876","https://openalex.org/W2076518901","https://openalex.org/W2077899601","https://openalex.org/W2079642576","https://openalex.org/W2081207927","https://openalex.org/W2081388499","https://openalex.org/W2081722738","https://openalex.org/W2084342231","https://openalex.org/W2085382058","https://openalex.org/W2085460768","https://openalex.org/W2085549372","https://openalex.org/W2086549522","https://openalex.org/W2086652099","https://openalex.org/W2087148472","https://openalex.org/W2087480495","https://openalex.org/W2088945275","https://openalex.org/W2089121553","https://openalex.org/W2089338727","https://openalex.org/W2089379231","https://openalex.org/W2090496556","https://openalex.org/W2091504428","https://openalex.org/W2091583677","https://openalex.org/W2091904156","https://openalex.org/W2092373383","https://openalex.org/W2092696277","https://openalex.org/W2092756981","https://openalex.org/W2093065590","https://openalex.org/W2093291854","https://openalex.org/W2093551683","https://openalex.org/W2094926850","https://openalex.org/W2097090021","https://openalex.org/W2098323233","https://openalex.org/W2098592178","https://openalex.org/W2099697766","https://openalex.org/W2100026878","https://openalex.org/W2100444220","https://openalex.org/W2103184242","https://openalex.org/W2103487714","https://openalex.org/W2105940636","https://openalex.org/W2106443001","https://openalex.org/W2107084198","https://openalex.org/W2107382600","https://openalex.org/W2107463225","https://openalex.org/W2107768095","https://openalex.org/W2107794933","https://openalex.org/W2108461753","https://openalex.org/W2108691434","https://openalex.org/W2113626142","https://openalex.org/W2114062643","https://openalex.org/W2115375673","https://openalex.org/W2116181900","https://openalex.org/W2116274846","https://openalex.org/W2118126401","https://openalex.org/W2118862369","https://openalex.org/W2121134503","https://openalex.org/W2122025961","https://openalex.org/W2122561085","https://openalex.org/W2122669910","https://openalex.org/W2123757376","https://openalex.org/W2124436174","https://openalex.org/W2126824225","https://openalex.org/W2126856198","https://openalex.org/W2127143133","https://openalex.org/W2127534336","https://openalex.org/W2128315965","https://openalex.org/W2131001449","https://openalex.org/W2134049139","https://openalex.org/W2134621022","https://openalex.org/W2134752585","https://openalex.org/W2134843796","https://openalex.org/W2134881136","https://openalex.org/W2135313990","https://openalex.org/W2135366381","https://openalex.org/W2137530627","https://openalex.org/W2137628031","https://openalex.org/W2139070373","https://openalex.org/W2140912298","https://openalex.org/W2141072614","https://openalex.org/W2142073070","https://openalex.org/W2143142289","https://openalex.org/W2143698296","https://openalex.org/W2144200470","https://openalex.org/W2144505335","https://openalex.org/W2144914570","https://openalex.org/W2145424175","https://openalex.org/W2146869122","https://openalex.org/W2147140335","https://openalex.org/W2147763934","https://openalex.org/W2149893809","https://openalex.org/W2152690388","https://openalex.org/W2153149630","https://openalex.org/W2153483268","https://openalex.org/W2153626287","https://openalex.org/W2153630221","https://openalex.org/W2154313945","https://openalex.org/W2155244109","https://openalex.org/W2157110881","https://openalex.org/W2157394154","https://openalex.org/W2157795937","https://openalex.org/W2158216255","https://openalex.org/W2158395869","https://openalex.org/W2161264813","https://openalex.org/W2161450943","https://openalex.org/W2161847753","https://openalex.org/W2162457334","https://openalex.org/W2162778971","https://openalex.org/W2163820843","https://openalex.org/W2165961003","https://openalex.org/W2167545897","https://openalex.org/W2167558742","https://openalex.org/W2168076769","https://openalex.org/W2170286226","https://openalex.org/W2170905535","https://openalex.org/W2174389921","https://openalex.org/W2179293540","https://openalex.org/W2214899983","https://openalex.org/W2313908176","https://openalex.org/W2331849216","https://openalex.org/W2337718639","https://openalex.org/W4210821588","https://openalex.org/W4238669448","https://openalex.org/W4242883546","https://openalex.org/W4243260584","https://openalex.org/W4255683652"],"related_works":["https://openalex.org/W2162928073","https://openalex.org/W1970810798","https://openalex.org/W1996957684","https://openalex.org/W1978560369","https://openalex.org/W2071303822","https://openalex.org/W2055774898","https://openalex.org/W2479718124","https://openalex.org/W2074256248","https://openalex.org/W3112240917","https://openalex.org/W7098481211"],"abstract_inverted_index":{"Studies":[0],"examining":[1,55],"whether":[2],"genetic":[3,62,86,302],"susceptibility":[4,63,87,293,303],"testing":[5,36,64,88,188,269,304,316],"for":[6,74,89,305],"common,":[7,306],"complex":[8,307],"diseases":[9,308],"can":[10],"motivate":[11],"individuals":[12,299],"to":[13,46,177,185,201,222,245,250,289,312,320,345],"improve":[14],"health":[15,226],"behaviors":[16,227],"and":[17,72,96,117,130,138,155,225,257,294,317],"advance":[18,223],"planning":[19,224],"have":[20],"shown":[21],"mixed":[22],"results.":[23,270],"An":[24],"understudied":[25],"area":[26],"that":[27,187,231,298],"may":[28],"help":[29],"reconcile":[30],"these":[31],"differential":[32],"findings":[33,338],"involves":[34],"how":[35],"was":[37,45,189],"initiated.":[38],"The":[39,271],"overall":[40],"goal":[41],"of":[42,50,81,103,115,157,166,193,207,280,291,336],"this":[43],"dissertation":[44],"understand":[47],"the":[48,69,113,135,152,204,208,215,334,346],"implications":[49],"different":[51],"sampling":[52],"strategies":[53],"by":[54,329],"self-referred":[56,95,116,136,143,181,197,232,343],"versus":[57],"systematically":[58,97,118,242],"recruited":[59,98,119,243],"populations":[60,344],"in":[61,100,134,277],"research.":[65],"Using":[66],"data":[67],"from":[68,340],"Risk":[70],"Evaluation":[71],"Education":[73],"Alzheimer\u2019s":[75,90],"Disease":[76],"(REVEAL)":[77],"Study,":[78],"a":[79,101],"series":[80,102],"randomized":[82],"controlled":[83],"trials":[84],"exploring":[85],"disease":[91],"(AD),":[92],"I":[93],"compared":[94,112],"participants":[99,120,182,198,233,260],"secondary":[104],"analyses":[105],"organized":[106],"into":[107],"three":[108],"papers.":[109],"Paper":[110,173,218],"1":[111],"profiles":[114],"at":[121,261],"enrollment,":[122],"finding":[123,180,230],"demographic":[124],"differences":[125,213],"(e.g.,":[126],"fewer":[127],"African":[128],"Americans":[129],"greater":[131,139,266],"household":[132],"incomes":[133],"cohort),":[137],"AD":[140,292],"worry":[141],"among":[142],"participants.":[144],"Cohorts":[145],"did":[146,274],"not":[147,190,275],"differ":[148,276],"on":[149,287,342],"beliefs":[150],"about":[151,160,170,268],"benefits,":[153],"risks":[154],"limitations":[156],"testing,":[158,229],"perceptions":[159,290],"susceptibility,":[161],"severity,":[162],"causes,":[163],"or":[164,168,247,282,286],"controllability":[165],"AD,":[167],"self-efficacy":[169],"coping,":[171],"however.":[172],"2":[174],"examined":[175,220],"responses":[176],"pretest":[178],"education,":[179],"more":[183,199,238,310],"likely":[184,200,239,311],"learn":[186],"deterministic.":[191],"Analyses":[192],"test":[194],"uptake":[195],"found":[196],"retain":[202],"through":[203,314],"initial":[205],"steps":[206],"study,":[209],"but":[210],"no":[211],"cohort":[212],"beyond":[214],"education":[216],"phase.":[217],"3":[219],"changes":[221,249,288,323],"after":[228],"with":[234,315],"higher-risk":[235],"results":[236,332],"were":[237],"than":[240,324],"their":[241],"counterparts":[244],"report":[246],"plan":[248],"long-term":[251],"care":[252],"insurance,":[253],"mental":[254],"activities,":[255],"diet":[256],"exercise.":[258],"Self-referred":[259],"increased":[262],"risk":[263],"also":[264],"reported":[265],"uncertainty":[267],"two":[272],"groups":[273],"post-test":[278],"reports":[279],"distress":[281],"positive":[283],"experiences,":[284],"however,":[285],"concern.":[295],"Findings":[296],"suggest":[297],"proactively":[300],"seeking":[301],"are":[309,327],"follow":[313],"use":[318],"it":[319],"inform":[321],"behavior":[322],"those":[325],"who":[326],"approached":[328],"others.":[330],"These":[331],"highlight":[333],"challenge":[335],"generalizing":[337],"derived":[339],"research":[341],"population":[347],"at-large.":[348]},"counts_by_year":[],"updated_date":"2026-11-07T11:25:07.637180","created_date":"2016-06-24T00:00:00"}
