Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings
Contrasting opinions exist regarding the disclosure of incidental findings detected through clinical genomic testing. This study used a discrete choice experiment to investigate genetic health professionals' preferences for the disclosure of incidental findings in an Australian paediatric setti...
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| Veröffentlicht in: | European journal of human genetics : EJHG 2014-10, Vol.22 (10), p.1225-1228 |
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| container_title | European journal of human genetics : EJHG |
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| creator | Turbitt, Erin Wiest, Michelle M Halliday, Jane L Amor, David J Metcalfe, Sylvia A |
| description | Contrasting opinions exist regarding the disclosure of incidental findings detected through clinical genomic testing. This study used a discrete choice experiment to investigate genetic health professionals' preferences for the disclosure of incidental findings in an Australian paediatric setting. Four attributes of conditions relating to incidental findings were investigated: availability of prevention and treatment, chance of symptoms ever developing, age of onset and severity. Questionnaires from 59 Australian genetic health professionals were analysed. Results show that when evaluating incidental findings for disclosure, these professionals value the availability of prevention and treatment for the condition above all other characteristics included in the study. The framework of this discrete choice experiment can be used to investigate the preferences of other stakeholders such as paediatricians and parents about disclosure of incidental findings. The results of this study may be considered when assessing which categories of incidental findings are most suitable for disclosure in clinical practice. |
| doi_str_mv | 10.1038/ejhg.2014.11 |
| format | Article |
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This study used a discrete choice experiment to investigate genetic health professionals' preferences for the disclosure of incidental findings in an Australian paediatric setting. Four attributes of conditions relating to incidental findings were investigated: availability of prevention and treatment, chance of symptoms ever developing, age of onset and severity. Questionnaires from 59 Australian genetic health professionals were analysed. Results show that when evaluating incidental findings for disclosure, these professionals value the availability of prevention and treatment for the condition above all other characteristics included in the study. The framework of this discrete choice experiment can be used to investigate the preferences of other stakeholders such as paediatricians and parents about disclosure of incidental findings. The results of this study may be considered when assessing which categories of incidental findings are most suitable for disclosure in clinical practice.</description><identifier>ISSN: 1018-4813</identifier><identifier>EISSN: 1476-5438</identifier><identifier>DOI: 10.1038/ejhg.2014.11</identifier><identifier>PMID: 24496062</identifier><language>eng</language><publisher>England: Nature Publishing Group</publisher><subject>Adolescent ; Adult ; Choice Behavior ; Clinical medicine ; Decision making ; Decision Making - ethics ; Disclosure ; Economic models ; Ethics ; Factorial experiments ; Female ; Genetic analysis ; Genetic counseling ; Genetic Testing ; Genetics ; Genetics, Medical - ethics ; Health care ; Health Personnel ; Humans ; Incidental Findings ; Male ; Medical personnel ; Medical research ; Middle Aged ; Patient Preference ; Professionals ; Questionnaires ; Research centers ; Short Report ; Studies ; Surveys and Questionnaires ; Values ; Young Adult</subject><ispartof>European journal of human genetics : EJHG, 2014-10, Vol.22 (10), p.1225-1228</ispartof><rights>Copyright Nature Publishing Group Oct 2014</rights><rights>Copyright © 2014 Macmillan Publishers Limited 2014 Macmillan Publishers Limited</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c585t-54916fa82f9780ddb45571aff1ac6cc01e3e5c5833ffc353c7d7459509905eea3</citedby><cites>FETCH-LOGICAL-c585t-54916fa82f9780ddb45571aff1ac6cc01e3e5c5833ffc353c7d7459509905eea3</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/PMC4169537/pdf/$$EPDF$$P50$$Gpubmedcentral$$H</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4169537/$$EHTML$$P50$$Gpubmedcentral$$H</linktohtml><link.rule.ids>230,314,723,776,780,881,27903,27904,53769,53771</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24496062$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Turbitt, Erin</creatorcontrib><creatorcontrib>Wiest, Michelle M</creatorcontrib><creatorcontrib>Halliday, Jane L</creatorcontrib><creatorcontrib>Amor, David J</creatorcontrib><creatorcontrib>Metcalfe, Sylvia A</creatorcontrib><title>Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings</title><title>European journal of human genetics : EJHG</title><addtitle>Eur J Hum Genet</addtitle><description>Contrasting opinions exist regarding the disclosure of incidental findings detected through clinical genomic testing. This study used a discrete choice experiment to investigate genetic health professionals' preferences for the disclosure of incidental findings in an Australian paediatric setting. Four attributes of conditions relating to incidental findings were investigated: availability of prevention and treatment, chance of symptoms ever developing, age of onset and severity. Questionnaires from 59 Australian genetic health professionals were analysed. Results show that when evaluating incidental findings for disclosure, these professionals value the availability of prevention and treatment for the condition above all other characteristics included in the study. The framework of this discrete choice experiment can be used to investigate the preferences of other stakeholders such as paediatricians and parents about disclosure of incidental findings. The results of this study may be considered when assessing which categories of incidental findings are most suitable for disclosure in clinical practice.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Choice Behavior</subject><subject>Clinical medicine</subject><subject>Decision making</subject><subject>Decision Making - ethics</subject><subject>Disclosure</subject><subject>Economic models</subject><subject>Ethics</subject><subject>Factorial experiments</subject><subject>Female</subject><subject>Genetic analysis</subject><subject>Genetic counseling</subject><subject>Genetic Testing</subject><subject>Genetics</subject><subject>Genetics, Medical - ethics</subject><subject>Health care</subject><subject>Health Personnel</subject><subject>Humans</subject><subject>Incidental Findings</subject><subject>Male</subject><subject>Medical personnel</subject><subject>Medical research</subject><subject>Middle Aged</subject><subject>Patient Preference</subject><subject>Professionals</subject><subject>Questionnaires</subject><subject>Research centers</subject><subject>Short Report</subject><subject>Studies</subject><subject>Surveys and Questionnaires</subject><subject>Values</subject><subject>Young Adult</subject><issn>1018-4813</issn><issn>1476-5438</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqFkb1rHDEQxUVwiL_SuQ4LblLkLprV16oxGJM4AUOauBY67ehOh251lnYP_N9bix3jpEklwfvNY948Qi6ALoGy7ituN-tlS4EvAd6RE-BKLgRn3VH9U-gWvAN2TE5L2dIKKQUfyHHLuZZUtickXx9siHYVYhgfm-SbMaMddziMTZ_DAUvTowslpKHM6hoHHINrNmjjuGn2OXkss2pjaewqTXUsFBdTmTLOA2Fwoa9uNjY-DH0Y1uWcvPcVx48v7xm5__7t982Pxd2v258313cLJzox1gwapLdd67XqaN-vuBAKrPdgnXSOAjIUFWXMe8cEc6pXXGhBtaYC0bIzcvXsu59WO-xd3SLbaPY57Gx-NMkG87cyhI1Zp4PhILVgqhp8fjHI6WHCMppdzYYx2gHTVAxIwaXmWtH_o0Iy3Skp24pe_oNu05TnA85UKwVwzir15ZlyOZWS0b_uDdTMvZu5dzP3bgAq_ult1lf4T9HsCTxwq-Q</recordid><startdate>20141001</startdate><enddate>20141001</enddate><creator>Turbitt, Erin</creator><creator>Wiest, Michelle M</creator><creator>Halliday, Jane L</creator><creator>Amor, David J</creator><creator>Metcalfe, Sylvia A</creator><general>Nature Publishing Group</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88A</scope><scope>88E</scope><scope>8AO</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M7P</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20141001</creationdate><title>Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings</title><author>Turbitt, Erin ; 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The results of this study may be considered when assessing which categories of incidental findings are most suitable for disclosure in clinical practice.</abstract><cop>England</cop><pub>Nature Publishing Group</pub><pmid>24496062</pmid><doi>10.1038/ejhg.2014.11</doi><tpages>4</tpages><oa>free_for_read</oa></addata></record> |
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| source | MEDLINE; Springer Nature - Complete Springer Journals; PubMed Central; EZB Electronic Journals Library |
| subjects | Adolescent Adult Choice Behavior Clinical medicine Decision making Decision Making - ethics Disclosure Economic models Ethics Factorial experiments Female Genetic analysis Genetic counseling Genetic Testing Genetics Genetics, Medical - ethics Health care Health Personnel Humans Incidental Findings Male Medical personnel Medical research Middle Aged Patient Preference Professionals Questionnaires Research centers Short Report Studies Surveys and Questionnaires Values Young Adult |
| title | Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings |
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