Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies
Purpose As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants’ psychological o...
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| Veröffentlicht in: | Genetics in medicine 2019-12, Vol.21 (12), p.2781-2790 |
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| creator | Robinson, Jill O. Wynn, Julia Biesecker, Barbara Biesecker, Leslie G. Bernhardt, Barbara Brothers, Kyle B. Chung, Wendy K. Christensen, Kurt D. Green, Robert C. McGuire, Amy L. Hart, M. Ragan Griesemer, Ida Patrick, Donald L. Rini, Christine Veenstra, David Cronin, Angel M. Gray, Stacy W. |
| description | Purpose
As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants’ psychological outcomes across multiple clinical settings.
Methods
We conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale).
Results
Anxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants’ anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses.
Conclusion
Our findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation. |
| doi_str_mv | 10.1038/s41436-019-0565-3 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_7260995</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2321689585</sourcerecordid><originalsourceid>FETCH-LOGICAL-c470t-ef81cede780206ed63bc2c9ee305fb46d5f9fc8989e9082a0d2675e47e29d57d3</originalsourceid><addsrcrecordid>eNp1kk1vEzEQhlcIREvhB3BBlriUw4I_1l6bQyUUhQ-pEqiFs-XYs8lWXjvY3qr5T_xIHFJaQOLkked53_GMp2meE_yaYCbf5I50TLSYqBZzwVv2oDkmnOEWMyEe1hgr2TKB8VHzJOcrjEnPKH7cHDFCpFKCHTc_vuSd3UQf16M1HsW52DhBRgm8KeBQiQhu6g0ywaE1hH2Y4fsMwY5hXbE8-4LcmK2PeU7wFhk0QTGtCcbv8phRHKrgGgJa-DH8KnJ5r1_ebH1MpsS0QxeQwSS7QaeLy-XFK7SIIcdUxnlCucxuhPy0eTQYn-HZ7XnSfHu__Lr42J5__vBp8e68tV2PSwuDJBYc9BJTLMAJtrLUKgCG-bDqhOODGqxUUoHCkhrsqOg5dD1Q5Xjv2ElzdvDdzqsJnIVQkvF6m8bJpJ2OZtR_Z8K40et4rXsqsFK8GpzeGqRYe81FT3VC4L0JEOesKRWSEd5xXNGX_6BXcU51eJVilAipuNwbkgNlU8w5wXD3GIL1fhf0YRd03QW93wXNqubFn13cKX5_fgXoAcg1FdaQ7kv_3_UncybEQw</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2321689585</pqid></control><display><type>article</type><title>Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies</title><source>MEDLINE</source><source>Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals</source><source>Alma/SFX Local Collection</source><creator>Robinson, Jill O. ; Wynn, Julia ; Biesecker, Barbara ; Biesecker, Leslie G. ; Bernhardt, Barbara ; Brothers, Kyle B. ; Chung, Wendy K. ; Christensen, Kurt D. ; Green, Robert C. ; McGuire, Amy L. ; Hart, M. Ragan ; Griesemer, Ida ; Patrick, Donald L. ; Rini, Christine ; Veenstra, David ; Cronin, Angel M. ; Gray, Stacy W.</creator><creatorcontrib>Robinson, Jill O. ; Wynn, Julia ; Biesecker, Barbara ; Biesecker, Leslie G. ; Bernhardt, Barbara ; Brothers, Kyle B. ; Chung, Wendy K. ; Christensen, Kurt D. ; Green, Robert C. ; McGuire, Amy L. ; Hart, M. Ragan ; Griesemer, Ida ; Patrick, Donald L. ; Rini, Christine ; Veenstra, David ; Cronin, Angel M. ; Gray, Stacy W.</creatorcontrib><description>Purpose
As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants’ psychological outcomes across multiple clinical settings.
Methods
We conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale).
Results
Anxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants’ anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses.
Conclusion
Our findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation.</description><identifier>ISSN: 1098-3600</identifier><identifier>EISSN: 1530-0366</identifier><identifier>DOI: 10.1038/s41436-019-0565-3</identifier><identifier>PMID: 31189963</identifier><language>eng</language><publisher>New York: Nature Publishing Group US</publisher><subject>Adult ; Anxiety ; Anxiety - psychology ; Biomedical and Life Sciences ; Biomedicine ; Chromosome Mapping ; Consortia ; Depression - psychology ; Disclosure - ethics ; Emotions ; Exome ; Female ; Genetic Testing - ethics ; Genetic Testing - methods ; Genomes ; Genomics - methods ; Human Genetics ; Humans ; Laboratory Medicine ; Male ; Meta-analysis ; Stress, Psychological - psychology ; Uncertainty ; Whole Exome Sequencing - ethics</subject><ispartof>Genetics in medicine, 2019-12, Vol.21 (12), p.2781-2790</ispartof><rights>American College of Medical Genetics and Genomics 2019</rights><rights>Copyright Nature Publishing Group Dec 2019</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c470t-ef81cede780206ed63bc2c9ee305fb46d5f9fc8989e9082a0d2675e47e29d57d3</citedby><cites>FETCH-LOGICAL-c470t-ef81cede780206ed63bc2c9ee305fb46d5f9fc8989e9082a0d2675e47e29d57d3</cites><orcidid>0000-0003-4068-776X ; 0000-0001-8472-0424 ; 0000-0001-6556-2520 ; 0000-0002-5220-6022 ; 0000-0001-6948-0143 ; 0000-0002-8550-9724</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,776,780,881,27901,27902</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31189963$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Robinson, Jill O.</creatorcontrib><creatorcontrib>Wynn, Julia</creatorcontrib><creatorcontrib>Biesecker, Barbara</creatorcontrib><creatorcontrib>Biesecker, Leslie G.</creatorcontrib><creatorcontrib>Bernhardt, Barbara</creatorcontrib><creatorcontrib>Brothers, Kyle B.</creatorcontrib><creatorcontrib>Chung, Wendy K.</creatorcontrib><creatorcontrib>Christensen, Kurt D.</creatorcontrib><creatorcontrib>Green, Robert C.</creatorcontrib><creatorcontrib>McGuire, Amy L.</creatorcontrib><creatorcontrib>Hart, M. Ragan</creatorcontrib><creatorcontrib>Griesemer, Ida</creatorcontrib><creatorcontrib>Patrick, Donald L.</creatorcontrib><creatorcontrib>Rini, Christine</creatorcontrib><creatorcontrib>Veenstra, David</creatorcontrib><creatorcontrib>Cronin, Angel M.</creatorcontrib><creatorcontrib>Gray, Stacy W.</creatorcontrib><title>Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies</title><title>Genetics in medicine</title><addtitle>Genet Med</addtitle><addtitle>Genet Med</addtitle><description>Purpose
As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants’ psychological outcomes across multiple clinical settings.
Methods
We conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale).
Results
Anxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants’ anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses.
Conclusion
Our findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation.</description><subject>Adult</subject><subject>Anxiety</subject><subject>Anxiety - psychology</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Chromosome Mapping</subject><subject>Consortia</subject><subject>Depression - psychology</subject><subject>Disclosure - ethics</subject><subject>Emotions</subject><subject>Exome</subject><subject>Female</subject><subject>Genetic Testing - ethics</subject><subject>Genetic Testing - methods</subject><subject>Genomes</subject><subject>Genomics - methods</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Laboratory Medicine</subject><subject>Male</subject><subject>Meta-analysis</subject><subject>Stress, Psychological - psychology</subject><subject>Uncertainty</subject><subject>Whole Exome Sequencing - ethics</subject><issn>1098-3600</issn><issn>1530-0366</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2019</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNp1kk1vEzEQhlcIREvhB3BBlriUw4I_1l6bQyUUhQ-pEqiFs-XYs8lWXjvY3qr5T_xIHFJaQOLkked53_GMp2meE_yaYCbf5I50TLSYqBZzwVv2oDkmnOEWMyEe1hgr2TKB8VHzJOcrjEnPKH7cHDFCpFKCHTc_vuSd3UQf16M1HsW52DhBRgm8KeBQiQhu6g0ywaE1hH2Y4fsMwY5hXbE8-4LcmK2PeU7wFhk0QTGtCcbv8phRHKrgGgJa-DH8KnJ5r1_ebH1MpsS0QxeQwSS7QaeLy-XFK7SIIcdUxnlCucxuhPy0eTQYn-HZ7XnSfHu__Lr42J5__vBp8e68tV2PSwuDJBYc9BJTLMAJtrLUKgCG-bDqhOODGqxUUoHCkhrsqOg5dD1Q5Xjv2ElzdvDdzqsJnIVQkvF6m8bJpJ2OZtR_Z8K40et4rXsqsFK8GpzeGqRYe81FT3VC4L0JEOesKRWSEd5xXNGX_6BXcU51eJVilAipuNwbkgNlU8w5wXD3GIL1fhf0YRd03QW93wXNqubFn13cKX5_fgXoAcg1FdaQ7kv_3_UncybEQw</recordid><startdate>20191201</startdate><enddate>20191201</enddate><creator>Robinson, Jill O.</creator><creator>Wynn, Julia</creator><creator>Biesecker, Barbara</creator><creator>Biesecker, Leslie G.</creator><creator>Bernhardt, Barbara</creator><creator>Brothers, Kyle B.</creator><creator>Chung, Wendy K.</creator><creator>Christensen, Kurt D.</creator><creator>Green, Robert C.</creator><creator>McGuire, Amy L.</creator><creator>Hart, M. Ragan</creator><creator>Griesemer, Ida</creator><creator>Patrick, Donald L.</creator><creator>Rini, Christine</creator><creator>Veenstra, David</creator><creator>Cronin, Angel M.</creator><creator>Gray, Stacy W.</creator><general>Nature Publishing Group US</general><general>Elsevier Limited</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>88E</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-4068-776X</orcidid><orcidid>https://orcid.org/0000-0001-8472-0424</orcidid><orcidid>https://orcid.org/0000-0001-6556-2520</orcidid><orcidid>https://orcid.org/0000-0002-5220-6022</orcidid><orcidid>https://orcid.org/0000-0001-6948-0143</orcidid><orcidid>https://orcid.org/0000-0002-8550-9724</orcidid></search><sort><creationdate>20191201</creationdate><title>Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies</title><author>Robinson, Jill O. ; Wynn, Julia ; Biesecker, Barbara ; Biesecker, Leslie G. ; Bernhardt, Barbara ; Brothers, Kyle B. ; Chung, Wendy K. ; Christensen, Kurt D. ; Green, Robert C. ; McGuire, Amy L. ; Hart, M. Ragan ; Griesemer, Ida ; Patrick, Donald L. ; Rini, Christine ; Veenstra, David ; Cronin, Angel M. ; Gray, Stacy W.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c470t-ef81cede780206ed63bc2c9ee305fb46d5f9fc8989e9082a0d2675e47e29d57d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2019</creationdate><topic>Adult</topic><topic>Anxiety</topic><topic>Anxiety - psychology</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedicine</topic><topic>Chromosome Mapping</topic><topic>Consortia</topic><topic>Depression - psychology</topic><topic>Disclosure - ethics</topic><topic>Emotions</topic><topic>Exome</topic><topic>Female</topic><topic>Genetic Testing - ethics</topic><topic>Genetic Testing - methods</topic><topic>Genomes</topic><topic>Genomics - methods</topic><topic>Human Genetics</topic><topic>Humans</topic><topic>Laboratory Medicine</topic><topic>Male</topic><topic>Meta-analysis</topic><topic>Stress, Psychological - psychology</topic><topic>Uncertainty</topic><topic>Whole Exome Sequencing - ethics</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Robinson, Jill O.</creatorcontrib><creatorcontrib>Wynn, Julia</creatorcontrib><creatorcontrib>Biesecker, Barbara</creatorcontrib><creatorcontrib>Biesecker, Leslie G.</creatorcontrib><creatorcontrib>Bernhardt, Barbara</creatorcontrib><creatorcontrib>Brothers, Kyle B.</creatorcontrib><creatorcontrib>Chung, Wendy K.</creatorcontrib><creatorcontrib>Christensen, Kurt D.</creatorcontrib><creatorcontrib>Green, Robert C.</creatorcontrib><creatorcontrib>McGuire, Amy L.</creatorcontrib><creatorcontrib>Hart, M. Ragan</creatorcontrib><creatorcontrib>Griesemer, Ida</creatorcontrib><creatorcontrib>Patrick, Donald L.</creatorcontrib><creatorcontrib>Rini, Christine</creatorcontrib><creatorcontrib>Veenstra, David</creatorcontrib><creatorcontrib>Cronin, Angel M.</creatorcontrib><creatorcontrib>Gray, Stacy W.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Genetics in medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Robinson, Jill O.</au><au>Wynn, Julia</au><au>Biesecker, Barbara</au><au>Biesecker, Leslie G.</au><au>Bernhardt, Barbara</au><au>Brothers, Kyle B.</au><au>Chung, Wendy K.</au><au>Christensen, Kurt D.</au><au>Green, Robert C.</au><au>McGuire, Amy L.</au><au>Hart, M. Ragan</au><au>Griesemer, Ida</au><au>Patrick, Donald L.</au><au>Rini, Christine</au><au>Veenstra, David</au><au>Cronin, Angel M.</au><au>Gray, Stacy W.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies</atitle><jtitle>Genetics in medicine</jtitle><stitle>Genet Med</stitle><addtitle>Genet Med</addtitle><date>2019-12-01</date><risdate>2019</risdate><volume>21</volume><issue>12</issue><spage>2781</spage><epage>2790</epage><pages>2781-2790</pages><issn>1098-3600</issn><eissn>1530-0366</eissn><abstract>Purpose
As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants’ psychological outcomes across multiple clinical settings.
Methods
We conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale).
Results
Anxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants’ anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses.
Conclusion
Our findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation.</abstract><cop>New York</cop><pub>Nature Publishing Group US</pub><pmid>31189963</pmid><doi>10.1038/s41436-019-0565-3</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0003-4068-776X</orcidid><orcidid>https://orcid.org/0000-0001-8472-0424</orcidid><orcidid>https://orcid.org/0000-0001-6556-2520</orcidid><orcidid>https://orcid.org/0000-0002-5220-6022</orcidid><orcidid>https://orcid.org/0000-0001-6948-0143</orcidid><orcidid>https://orcid.org/0000-0002-8550-9724</orcidid><oa>free_for_read</oa></addata></record> |
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| subjects | Adult Anxiety Anxiety - psychology Biomedical and Life Sciences Biomedicine Chromosome Mapping Consortia Depression - psychology Disclosure - ethics Emotions Exome Female Genetic Testing - ethics Genetic Testing - methods Genomes Genomics - methods Human Genetics Humans Laboratory Medicine Male Meta-analysis Stress, Psychological - psychology Uncertainty Whole Exome Sequencing - ethics |
| title | Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies |
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