What is a meaningful result? Disclosing the results of genomic research in autism to research participants
Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasi...
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description | Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether – and which results – to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results ‘reportable’ when results were perceived to explain cause, and answer the question ‘why;’ that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed ‘true.’ Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as ‘true’ depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is ‘genetic.’ For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders. |
doi_str_mv | 10.1038/ejhg.2010.34 |
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Disclosing the results of genomic research in autism to research participants</title><source>MEDLINE</source><source>PubMed Central</source><source>Alma/SFX Local Collection</source><source>EZB Electronic Journals Library</source><creator>Miller, Fiona Alice ; Hayeems, Robin Zoe ; Bytautas, Jessica Peace</creator><creatorcontrib>Miller, Fiona Alice ; Hayeems, Robin Zoe ; Bytautas, Jessica Peace</creatorcontrib><description>Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether – and which results – to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results ‘reportable’ when results were perceived to explain cause, and answer the question ‘why;’ that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed ‘true.’ Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as ‘true’ depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is ‘genetic.’ For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.</description><identifier>ISSN: 1018-4813</identifier><identifier>EISSN: 1476-5438</identifier><identifier>DOI: 10.1038/ejhg.2010.34</identifier><identifier>PMID: 20234389</identifier><language>eng</language><publisher>Cham: Springer International Publishing</publisher><subject>631/208/212 ; 631/208/2489/1512 ; 692/308/2056 ; 692/699/476/1312 ; Autism ; Autistic Disorder - genetics ; Bioethics ; Bioinformatics ; Biological and medical sciences ; Biomedical and Life Sciences ; Biomedicine ; Child clinical studies ; Children ; Codes of Ethics ; Cytogenetics ; Developmental disorders ; Disclosure - ethics ; Ethics ; Ethics, Research ; Fundamental and applied biological sciences. Psychology ; Gene Expression ; General aspects. Genetic counseling ; Genetic research ; Genetic Research - ethics ; Genetics of eukaryotes. Biological and molecular evolution ; Genomes ; Genomics ; Handbooks ; Human Genetics ; Humans ; Infantile autism ; Interviews ; Medical genetics ; Medical sciences ; Molecular and cellular biology ; Parents & parenting ; Psychology. Psychoanalysis. Psychiatry ; Psychopathology. Psychiatry ; Qualitative research ; Research Design ; Research Personnel - ethics ; Research Subjects ; Researcher-Subject Relations - ethics ; Researchers ; Studies</subject><ispartof>European journal of human genetics : EJHG, 2010-08, Vol.18 (8), p.867-871</ispartof><rights>Macmillan Publishers Limited 2010</rights><rights>2015 INIST-CNRS</rights><rights>Copyright Nature Publishing Group Aug 2010</rights><rights>Copyright © 2010 Macmillan Publishers Limited 2010 Macmillan Publishers Limited</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c601t-2df37aa9f93ff1fb81b7ec5496016b71876573c37175f9e26a7af4466c96a69d3</citedby><cites>FETCH-LOGICAL-c601t-2df37aa9f93ff1fb81b7ec5496016b71876573c37175f9e26a7af4466c96a69d3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987386/pdf/$$EPDF$$P50$$Gpubmedcentral$$H</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987386/$$EHTML$$P50$$Gpubmedcentral$$H</linktohtml><link.rule.ids>230,314,727,780,784,885,27924,27925,53791,53793</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=23032382$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/20234389$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Miller, Fiona Alice</creatorcontrib><creatorcontrib>Hayeems, Robin Zoe</creatorcontrib><creatorcontrib>Bytautas, Jessica Peace</creatorcontrib><title>What is a meaningful result? Disclosing the results of genomic research in autism to research participants</title><title>European journal of human genetics : EJHG</title><addtitle>Eur J Hum Genet</addtitle><addtitle>Eur J Hum Genet</addtitle><description>Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether – and which results – to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results ‘reportable’ when results were perceived to explain cause, and answer the question ‘why;’ that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed ‘true.’ Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as ‘true’ depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is ‘genetic.’ For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.</description><subject>631/208/212</subject><subject>631/208/2489/1512</subject><subject>692/308/2056</subject><subject>692/699/476/1312</subject><subject>Autism</subject><subject>Autistic Disorder - genetics</subject><subject>Bioethics</subject><subject>Bioinformatics</subject><subject>Biological and medical sciences</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Child clinical studies</subject><subject>Children</subject><subject>Codes of Ethics</subject><subject>Cytogenetics</subject><subject>Developmental disorders</subject><subject>Disclosure - ethics</subject><subject>Ethics</subject><subject>Ethics, Research</subject><subject>Fundamental and applied biological sciences. 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Disclosing the results of genomic research in autism to research participants</title><author>Miller, Fiona Alice ; Hayeems, Robin Zoe ; Bytautas, Jessica Peace</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c601t-2df37aa9f93ff1fb81b7ec5496016b71876573c37175f9e26a7af4466c96a69d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2010</creationdate><topic>631/208/212</topic><topic>631/208/2489/1512</topic><topic>692/308/2056</topic><topic>692/699/476/1312</topic><topic>Autism</topic><topic>Autistic Disorder - genetics</topic><topic>Bioethics</topic><topic>Bioinformatics</topic><topic>Biological and medical sciences</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedicine</topic><topic>Child clinical studies</topic><topic>Children</topic><topic>Codes of Ethics</topic><topic>Cytogenetics</topic><topic>Developmental disorders</topic><topic>Disclosure - ethics</topic><topic>Ethics</topic><topic>Ethics, Research</topic><topic>Fundamental and applied biological sciences. 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Respondents considered genomic research results ‘reportable’ when results were perceived to explain cause, and answer the question ‘why;’ that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed ‘true.’ Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as ‘true’ depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is ‘genetic.’ For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. 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subjects | 631/208/212 631/208/2489/1512 692/308/2056 692/699/476/1312 Autism Autistic Disorder - genetics Bioethics Bioinformatics Biological and medical sciences Biomedical and Life Sciences Biomedicine Child clinical studies Children Codes of Ethics Cytogenetics Developmental disorders Disclosure - ethics Ethics Ethics, Research Fundamental and applied biological sciences. Psychology Gene Expression General aspects. Genetic counseling Genetic research Genetic Research - ethics Genetics of eukaryotes. Biological and molecular evolution Genomes Genomics Handbooks Human Genetics Humans Infantile autism Interviews Medical genetics Medical sciences Molecular and cellular biology Parents & parenting Psychology. Psychoanalysis. Psychiatry Psychopathology. Psychiatry Qualitative research Research Design Research Personnel - ethics Research Subjects Researcher-Subject Relations - ethics Researchers Studies |
title | What is a meaningful result? Disclosing the results of genomic research in autism to research participants |
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