{"id":"https://openalex.org/W4383711008","doi":"https://doi.org/10.1002/jgc4.1749","title":"The lived experience of reconstructing identity in response to genetic risk of frontotemporal degeneration and amyotrophic lateral sclerosis","display_name":"The lived experience of reconstructing identity in response to genetic risk of frontotemporal degeneration and amyotrophic lateral sclerosis","publication_year":2023,"publication_date":"2023-07-10","ids":{"openalex":"https://openalex.org/W4383711008","doi":"https://doi.org/10.1002/jgc4.1749","pmid":"https://pubmed.ncbi.nlm.nih.gov/37424394","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/10776796"},"language":"en","primary_location":{"id":"doi:10.1002/jgc4.1749","doi":"https://doi.org/10.1002/jgc4.1749","is_oa":true,"landing_page_url":"https://doi.org/10.1002/jgc4.1749","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/jgc4.1749","source":{"id":"https://openalex.org/S99574856","display_name":"Journal of Genetic Counseling","issn_l":"1059-7700","issn":["1059-7700","1573-3599"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-3","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":"Journal of Genetic Counseling","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/jgc4.1749","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5067914046","display_name":"Laynie Dratch","orcid":"https://orcid.org/0000-0002-2179-3199","observed_orcids":["https://orcid.org/0000-0002-2179-3199"]},"institutions":[{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Laynie Dratch","raw_affiliation_strings":["Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA"],"raw_orcid":"https://orcid.org/0000-0002-2179-3199","affiliations":[{"raw_affiliation_string":"Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA","institution_ids":["https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5043470985","display_name":"Jill Owczarzak","orcid":"https://orcid.org/0000-0003-2380-5533","observed_orcids":["https://orcid.org/0000-0003-2380-5533"]},"institutions":[{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jill Owczarzak","raw_affiliation_strings":["Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA","institution_ids":["https://openalex.org/I145311948"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5006719625","display_name":"Weiyi Mu","orcid":"https://orcid.org/0000-0002-4049-6755","observed_orcids":["https://orcid.org/0000-0002-4049-6755","https://orcid.org/0000-0002-3676-9239"]},"institutions":[{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Weiyi Mu","raw_affiliation_strings":["McKusick-Nathans Department of Genetic Medicine, Johns Hopkins University, Baltimore, Maryland, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"McKusick-Nathans Department of Genetic Medicine, Johns Hopkins University, Baltimore, Maryland, USA","institution_ids":["https://openalex.org/I145311948"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5028577106","display_name":"Katheryn A Q Cousins","orcid":"https://orcid.org/0000-0003-1879-2766","observed_orcids":["https://orcid.org/0000-0003-1879-2766"]},"institutions":[{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Katheryn A. Q. Cousins","raw_affiliation_strings":["Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA","institution_ids":["https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5060433552","display_name":"Lauren M. Massimo","orcid":"https://orcid.org/0000-0002-3407-7335","observed_orcids":["https://orcid.org/0000-0002-3407-7335"]},"institutions":[{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Lauren Massimo","raw_affiliation_strings":["Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA","institution_ids":["https://openalex.org/I79576946"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5047108669","display_name":"Murray Grossman","orcid":"https://orcid.org/0000-0002-7447-6218","observed_orcids":["https://orcid.org/0000-0002-7447-6218"]},"institutions":[{"id":"https://openalex.org/I79576946","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10","country_code":"US","type":"education","lineage":["https://openalex.org/I79576946"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Murray Grossman","raw_affiliation_strings":["Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA","Deceased author"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology, University of Pennsylvania, Philadelphia, Pennsylvania, USA","institution_ids":["https://openalex.org/I79576946"]},{"raw_affiliation_string":"Deceased author","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5027880130","display_name":"Lori Hamby Erby","orcid":"https://orcid.org/0000-0001-6200-9033","observed_orcids":["https://orcid.org/0000-0001-6200-9033"]},"institutions":[{"id":"https://openalex.org/I1299303238","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238"]},{"id":"https://openalex.org/I145311948","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95","country_code":"US","type":"education","lineage":["https://openalex.org/I145311948"]},{"id":"https://openalex.org/I4210090236","display_name":"National Human Genome Research Institute","ror":"https://ror.org/00baak391","country_code":"US","type":"facility","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210090236"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Lori Erby","raw_affiliation_strings":["Center for Precision Health Research, NHGRI, NIH, Bethesda, Maryland, USA","McKusick-Nathans Department of Genetic Medicine, Johns Hopkins University, Baltimore, Maryland, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Center for Precision Health Research, NHGRI, NIH, Bethesda, Maryland, USA","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210090236"]},{"raw_affiliation_string":"McKusick-Nathans Department of Genetic Medicine, Johns Hopkins University, Baltimore, Maryland, USA","institution_ids":["https://openalex.org/I145311948"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":["https://openalex.org/A5067914046"],"corresponding_institution_ids":["https://openalex.org/I79576946"],"apc_list":{"value":3660,"currency":"USD","value_usd":3660},"apc_paid":null,"fwci":3.0403,"has_fulltext":true,"cited_by_count":15,"citation_normalized_percentile":{"value":0.91459814,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":89,"max":99},"biblio":{"volume":"33","issue":"3","first_page":"515","last_page":"527"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10009","display_name":"Dementia and Cognitive Impairment Research","score":0.7505000233650208,"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"}},"topics":[{"id":"https://openalex.org/T10009","display_name":"Dementia and Cognitive Impairment Research","score":0.7505000233650208,"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/T10855","display_name":"Amyotrophic Lateral Sclerosis Research","score":0.06629999727010727,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Neurology"},"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/T10949","display_name":"Genetic Neurodegenerative Diseases","score":0.042100001126527786,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/frontotemporal-lobar-degeneration","display_name":"frontotemporal lobar degeneration","score":0.9810000061988831},{"id":"https://openalex.org/keywords/amyotrophic-lateral-sclerosis","display_name":"amyotrophic lateral sclerosis","score":1.0},{"id":"https://openalex.org/keywords/genetic-risk","display_name":"genetic risk","score":0.7429999709129333},{"id":"https://openalex.org/keywords/predictive-genetic-testing","display_name":"predictive genetic testing","score":0.875},{"id":"https://openalex.org/keywords/identity-reconstruction","display_name":"identity reconstruction","score":0.7329999804496765},{"id":"https://openalex.org/keywords/lived-experience","display_name":"lived experience","score":0.8920000195503235},{"id":"https://openalex.org/keywords/risk-perception","display_name":"risk perception","score":0.7239999771118164},{"id":"https://openalex.org/keywords/uncertainty","display_name":"uncertainty","score":0.6359999775886536},{"id":"https://openalex.org/keywords/cartesian-dualism","display_name":"Cartesian dualism","score":0.8550000190734863},{"id":"https://openalex.org/keywords/personhood","display_name":"personhood","score":0.8980000019073486},{"id":"https://openalex.org/keywords/anticipatory-guidance","display_name":"anticipatory guidance","score":0.7549999952316284},{"id":"https://openalex.org/keywords/genetic-counseling","display_name":"genetic counseling","score":0.8740000128746033},{"id":"https://openalex.org/keywords/asymptomatic-carriers","display_name":"asymptomatic carriers","score":0.4970000088214874}],"concepts":[{"id":"https://openalex.org/C2780596555","wikidata":"https://www.wikidata.org/wiki/Q206901","display_name":"Amyotrophic lateral sclerosis","level":3,"score":0.6904718279838562},{"id":"https://openalex.org/C2778641062","wikidata":"https://www.wikidata.org/wiki/Q18592","display_name":"Frontotemporal dementia","level":4,"score":0.6689332723617554},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.48951828479766846},{"id":"https://openalex.org/C74196892","wikidata":"https://www.wikidata.org/wiki/Q7781188","display_name":"Thematic analysis","level":3,"score":0.46347886323928833},{"id":"https://openalex.org/C2778355321","wikidata":"https://www.wikidata.org/wiki/Q17079427","display_name":"Identity (music)","level":2,"score":0.4598994255065918},{"id":"https://openalex.org/C2776939681","wikidata":"https://www.wikidata.org/wiki/Q18579","display_name":"Frontotemporal lobar degeneration","level":5,"score":0.43750759959220886},{"id":"https://openalex.org/C47188148","wikidata":"https://www.wikidata.org/wiki/Q2254571","display_name":"Personal identity","level":3,"score":0.4316667914390564},{"id":"https://openalex.org/C163355716","wikidata":"https://www.wikidata.org/wiki/Q2154783","display_name":"Risk perception","level":3,"score":0.419899046421051},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.39196857810020447},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.3428364396095276},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3317258358001709},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.3110715448856354},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.3100079298019409},{"id":"https://openalex.org/C26760741","wikidata":"https://www.wikidata.org/wiki/Q160402","display_name":"Perception","level":2,"score":0.3058263063430786},{"id":"https://openalex.org/C169760540","wikidata":"https://www.wikidata.org/wiki/Q207011","display_name":"Neuroscience","level":1,"score":0.169271320104599},{"id":"https://openalex.org/C2777410049","wikidata":"https://www.wikidata.org/wiki/Q1860557","display_name":"Self-concept","level":2,"score":0.16468587517738342},{"id":"https://openalex.org/C2779483572","wikidata":"https://www.wikidata.org/wiki/Q83030","display_name":"Dementia","level":3,"score":0.16383647918701172},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.11624497175216675},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.07963907718658447},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C121332964","wikidata":"https://www.wikidata.org/wiki/Q413","display_name":"Physics","level":0,"score":0.0},{"id":"https://openalex.org/C24890656","wikidata":"https://www.wikidata.org/wiki/Q82811","display_name":"Acoustics","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000368","descriptor_name":"Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000690","descriptor_name":"Amyotrophic Lateral Sclerosis","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":true},{"descriptor_ui":"D000690","descriptor_name":"Amyotrophic Lateral Sclerosis","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D005260","descriptor_name":"Female","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":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D020022","descriptor_name":"Genetic Predisposition to Disease","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D057174","descriptor_name":"Frontotemporal Lobar Degeneration","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":false},{"descriptor_ui":"D057174","descriptor_name":"Frontotemporal Lobar Degeneration","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":false}],"locations_count":3,"locations":[{"id":"doi:10.1002/jgc4.1749","doi":"https://doi.org/10.1002/jgc4.1749","is_oa":true,"landing_page_url":"https://doi.org/10.1002/jgc4.1749","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/jgc4.1749","source":{"id":"https://openalex.org/S99574856","display_name":"Journal of Genetic Counseling","issn_l":"1059-7700","issn":["1059-7700","1573-3599"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-3","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":"Journal of Genetic Counseling","raw_type":"journal-article"},{"id":"pmid:37424394","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/37424394","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":"Journal of genetic counseling","raw_type":"Journal Article"},{"id":"pmh:oai:pubmedcentral.nih.gov:10776796","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/10776796","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC10776796/pdf/nihms-1913238.pdf","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":"J Genet Couns","raw_type":"Text"}],"best_oa_location":{"id":"doi:10.1002/jgc4.1749","doi":"https://doi.org/10.1002/jgc4.1749","is_oa":true,"landing_page_url":"https://doi.org/10.1002/jgc4.1749","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/jgc4.1749","source":{"id":"https://openalex.org/S99574856","display_name":"Journal of Genetic Counseling","issn_l":"1059-7700","issn":["1059-7700","1573-3599"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-3","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":"Journal of Genetic Counseling","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","score":0.9391000270843506,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[{"id":"https://openalex.org/G4171860445","display_name":"From cells to complex syndromes: using networks to understand heterogeneity in TDP-related frontotemporal degeneration and aging","funder_award_id":"P01AG066597","funder_id":"https://openalex.org/F4320337337","funder_display_name":"National Institute on Aging"},{"id":"https://openalex.org/G6336656591","display_name":null,"funder_award_id":"AG066597","funder_id":"https://openalex.org/F4320337337","funder_display_name":"National Institute on Aging"},{"id":"https://openalex.org/G9000164485","display_name":null,"funder_award_id":"AG066597","funder_id":"https://openalex.org/F4320332161","funder_display_name":"National Institutes of Health"},{"id":"https://openalex.org/G9000900917","display_name":"NHGRI/DIR Genetic Counseling Training Program","funder_award_id":"ZIEHG200353","funder_id":"https://openalex.org/F4320337348","funder_display_name":"National Human Genome Research Institute"}],"funders":[{"id":"https://openalex.org/F4320306078","display_name":"U.S. Department of Defense","ror":"https://ror.org/0447fe631"},{"id":"https://openalex.org/F4320309370","display_name":"University of Pennsylvania","ror":"https://ror.org/00b30xv10"},{"id":"https://openalex.org/F4320310145","display_name":"Johns Hopkins University","ror":"https://ror.org/00za53h95"},{"id":"https://openalex.org/F4320311876","display_name":"National Society of Genetic Counselors","ror":"https://ror.org/02ja4sy98"},{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320332669","display_name":"Johns Hopkins Bloomberg School of Public Health","ror":"https://ror.org/00za53h95"},{"id":"https://openalex.org/F4320337337","display_name":"National Institute on Aging","ror":"https://ror.org/049v75w11"},{"id":"https://openalex.org/F4320337348","display_name":"National Human Genome Research Institute","ror":"https://ror.org/00baak391"}],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4383711008.pdf","grobid_xml":"https://content.openalex.org/works/W4383711008.grobid-xml"},"referenced_works_count":56,"referenced_works":["https://openalex.org/W381319719","https://openalex.org/W596962103","https://openalex.org/W1533046403","https://openalex.org/W1884921019","https://openalex.org/W1970281209","https://openalex.org/W1971749549","https://openalex.org/W1976770755","https://openalex.org/W1977639214","https://openalex.org/W1979290264","https://openalex.org/W1980542254","https://openalex.org/W1989296618","https://openalex.org/W2001014781","https://openalex.org/W2009091204","https://openalex.org/W2009404218","https://openalex.org/W2010033808","https://openalex.org/W2022345552","https://openalex.org/W2026487189","https://openalex.org/W2057673220","https://openalex.org/W2063948462","https://openalex.org/W2077011090","https://openalex.org/W2099326566","https://openalex.org/W2105630660","https://openalex.org/W2106786486","https://openalex.org/W2108352978","https://openalex.org/W2109581863","https://openalex.org/W2114487880","https://openalex.org/W2118239967","https://openalex.org/W2128946941","https://openalex.org/W2153168932","https://openalex.org/W2165754388","https://openalex.org/W2172210752","https://openalex.org/W2254735081","https://openalex.org/W2404957728","https://openalex.org/W2515492896","https://openalex.org/W2524597629","https://openalex.org/W2582506456","https://openalex.org/W2623035941","https://openalex.org/W2769269450","https://openalex.org/W2794926869","https://openalex.org/W2890563766","https://openalex.org/W2918844549","https://openalex.org/W2972490888","https://openalex.org/W3011071809","https://openalex.org/W3017214408","https://openalex.org/W3038186988","https://openalex.org/W3092554216","https://openalex.org/W3107941938","https://openalex.org/W3164079261","https://openalex.org/W3176745011","https://openalex.org/W4211068178","https://openalex.org/W4223899611","https://openalex.org/W4281668949","https://openalex.org/W4309930290","https://openalex.org/W4315817642","https://openalex.org/W6617843820","https://openalex.org/W6921988819"],"related_works":["https://openalex.org/W4210746508","https://openalex.org/W4406300566","https://openalex.org/W2210123349","https://openalex.org/W2980464086","https://openalex.org/W7128997731","https://openalex.org/W3164079261","https://openalex.org/W4394600853","https://openalex.org/W4211237321","https://openalex.org/W7167336816","https://openalex.org/W2623035941"],"abstract_inverted_index":{"With":[0],"the":[1,19,30,103,145,173,176],"increasing":[2],"availability":[3],"of":[4,21,35,40,69,106,113,129,147,157,172,175],"predictive":[5],"genetic":[6,45,49,187,196],"testing":[7],"for":[8,85,92,141,201],"adult-onset":[9],"neurodegenerative":[10],"conditions,":[11],"it":[12],"is":[13,29],"imperative":[14],"that":[15,51,195,199],"we":[16,73,108],"better":[17],"understand":[18,62],"impact":[20],"learning":[22],"one's":[23],"risk":[24,64,91,130,137,188],"status.":[25],"Frontotemporal":[26],"degeneration":[27],"(FTD)":[28],"second":[31],"most":[32],"prevalent":[33],"cause":[34,52,56,90],"early-onset":[36],"dementia.":[37],"About":[38],"one-third":[39],"patients":[41],"have":[42,168],"an":[43,190],"identifiable":[44],"etiology,":[46],"and":[47,66,101,115,124,126,135,160,165,206],"some":[48],"variants":[50],"FTD":[53,93,114,134],"can":[54],"also":[55],"amyotrophic":[57],"lateral":[58],"sclerosis":[59],"(ALS).":[60],"To":[61],"individuals'":[63],"perception":[65],"broader":[67],"experience":[68],"living":[70],"at":[71,186,215],"risk,":[72],"completed":[74],"semi-structured":[75],"telephone":[76],"interviews":[77],"with":[78],"14":[79],"asymptomatic":[80],"adults":[81],"who":[82],"tested":[83],"positive":[84],"a":[86,98,118],"variant":[87],"known":[88],"to":[89,120,132,144,151],"and/or":[94],"ALS.":[95],"We":[96,193],"conducted":[97],"thematic":[99],"analysis,":[100],"within":[102],"core":[104],"topic":[105],"identity,":[107,121],"derived":[109],"three":[110],"themes:":[111],"conceptualization":[112],"ALS":[116,136],"as":[117],"threat":[119],"enduring":[122],"uncertainty":[123,207],"dread,":[125],"varying":[127],"centrality":[128],"status":[131],"identity.":[133,192],"raised":[138],"fundamental":[139],"issues":[140],"participants":[142],"related":[143],"essence":[146],"personhood,":[148],"challenged":[149],"them":[150],"confront":[152],"Cartesian":[153],"dualism":[154],"(the":[155],"philosophy":[156],"mind-body":[158],"separation),":[159],"exposed":[161],"how":[162,184],"time,":[163],"relationships,":[164],"social":[166],"roles":[167],"affected":[169],"their":[170],"understanding":[171],"nature":[174],"self.":[177],"Our":[178],"findings":[179],"provide":[180],"important":[181],"insight":[182],"into":[183],"being":[185],"shapes":[189],"individual's":[191],"conclude":[194],"counseling":[197],"interventions":[198],"allow":[200],"identity":[202],"exploration,":[203],"anticipatory":[204],"guidance,":[205],"management":[208],"should":[209],"be":[210],"utilized":[211],"when":[212],"supporting":[213],"persons":[214],"risk.":[216]},"counts_by_year":[{"year":2026,"cited_by_count":5},{"year":2025,"cited_by_count":5},{"year":2024,"cited_by_count":4},{"year":2023,"cited_by_count":1}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2023-07-11T00:00:00"}
