Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress
Genetic testing of minors is advised only for conditions in which benefits of early intervention outweigh potential psychological harms. This study investigated whether genetic counseling and test reporting for the CDKN2A/p16 mutation, which confers highly elevated melanoma risk, improved sun protec...
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| Veröffentlicht in: | Journal of genetic counseling 2018-08, Vol.27 (4), p.955-967 |
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| container_title | Journal of genetic counseling |
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| creator | Stump, Tammy K. Aspinwall, Lisa G. Kohlmann, Wendy Champine, Marjan Hauglid, Jamie Wu, Yelena P. Scott, Emily Cassidy, Pamela Leachman, Sancy A. |
| description | Genetic testing of minors is advised only for conditions in which benefits of early intervention outweigh potential psychological harms. This study investigated whether genetic counseling and test reporting for the
CDKN2A/p16
mutation, which confers highly elevated melanoma risk, improved sun protection without inducing distress. Eighteen minors (
M
age
= 12.4,
SD
= 1.9) from melanoma-prone families completed measures of protective behavior and distress at baseline, 1 week (distress only), 1 month, and 1 year following test disclosure. Participants and their mothers were individually interviewed on the psychological and behavioral impact of genetic testing 1 month and 1 year post-disclosure. Carriers (
n
= 9) and noncarriers (
n
= 9) reported significantly fewer sunburns and a greater proportion reported sun protection adherence between baseline and 1 year post-disclosure; results did not vary by mutation status. Anxiety symptoms remained low post-disclosure, while depressive symptoms and cancer worry decreased. Child and parent interviews corroborated these findings. Mothers indicated that genetic testing was beneficial (100%) because it promoted risk awareness (90.9%) and sun protection (81.8%) without making their children scared (89.9%); several noted their child’s greater independent practice of sun protection (45.4%). In this small initial study, minors undergoing
CDKN2A/p16
genetic testing reported behavioral improvements and consistently low distress, suggesting such testing may be safely implemented early in life, allowing greater opportunity for risk-reducing lifestyle changes. |
| doi_str_mv | 10.1007/s10897-017-0185-5 |
| format | Article |
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CDKN2A/p16
mutation, which confers highly elevated melanoma risk, improved sun protection without inducing distress. Eighteen minors (
M
age
= 12.4,
SD
= 1.9) from melanoma-prone families completed measures of protective behavior and distress at baseline, 1 week (distress only), 1 month, and 1 year following test disclosure. Participants and their mothers were individually interviewed on the psychological and behavioral impact of genetic testing 1 month and 1 year post-disclosure. Carriers (
n
= 9) and noncarriers (
n
= 9) reported significantly fewer sunburns and a greater proportion reported sun protection adherence between baseline and 1 year post-disclosure; results did not vary by mutation status. Anxiety symptoms remained low post-disclosure, while depressive symptoms and cancer worry decreased. Child and parent interviews corroborated these findings. Mothers indicated that genetic testing was beneficial (100%) because it promoted risk awareness (90.9%) and sun protection (81.8%) without making their children scared (89.9%); several noted their child’s greater independent practice of sun protection (45.4%). In this small initial study, minors undergoing
CDKN2A/p16
genetic testing reported behavioral improvements and consistently low distress, suggesting such testing may be safely implemented early in life, allowing greater opportunity for risk-reducing lifestyle changes.</description><identifier>ISSN: 1059-7700</identifier><identifier>ISSN: 1573-3599</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1007/s10897-017-0185-5</identifier><identifier>PMID: 29349527</identifier><language>eng</language><publisher>New York: Springer US</publisher><subject>Adolescent ; Adult ; Anxiety ; Behavior change ; Biomedical and Life Sciences ; Biomedicine ; Cancer ; CDKN2A/p16 ; Child ; Children ; Clinical Psychology ; Early intervention ; Ethics ; Familial melanoma ; Female ; Genetic counseling ; Genetic Counseling - psychology ; Genetic Predisposition to Disease ; Genetic screening ; Genetic Testing ; Gynecology ; Human Genetics ; Humans ; Lifestyles ; Male ; Melanoma ; Melanoma - diagnosis ; Melanoma - genetics ; Mental depression ; Minors ; Mothers ; Mutation ; Original Research ; Prevention ; Prone ; Protective behavior ; Protective factors ; Psychological distress ; Public Health ; Risk Reduction Behavior ; Skin melanoma ; Skin Neoplasms - diagnosis ; Skin Neoplasms - genetics ; Sun ; Sun protection</subject><ispartof>Journal of genetic counseling, 2018-08, Vol.27 (4), p.955-967</ispartof><rights>National Society of Genetic Counselors, Inc. 2018</rights><rights>2018 National Society of Genetic Counselors, Inc.</rights><rights>Journal of Genetic Counseling is a copyright of Springer, (2018). All Rights Reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5185-cb303028b24737f310d8a282c255fb51def45dc2bf5b155aa394d5bc204a5b343</citedby><cites>FETCH-LOGICAL-c5185-cb303028b24737f310d8a282c255fb51def45dc2bf5b155aa394d5bc204a5b343</cites><orcidid>0000-0002-5045-1796</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10897-017-0185-5$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10897-017-0185-5$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>230,314,780,784,885,1417,12846,27924,27925,30999,41488,42557,45574,45575,51319</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/29349527$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Stump, Tammy K.</creatorcontrib><creatorcontrib>Aspinwall, Lisa G.</creatorcontrib><creatorcontrib>Kohlmann, Wendy</creatorcontrib><creatorcontrib>Champine, Marjan</creatorcontrib><creatorcontrib>Hauglid, Jamie</creatorcontrib><creatorcontrib>Wu, Yelena P.</creatorcontrib><creatorcontrib>Scott, Emily</creatorcontrib><creatorcontrib>Cassidy, Pamela</creatorcontrib><creatorcontrib>Leachman, Sancy A.</creatorcontrib><title>Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress</title><title>Journal of genetic counseling</title><addtitle>J Genet Counsel</addtitle><addtitle>J Genet Couns</addtitle><description>Genetic testing of minors is advised only for conditions in which benefits of early intervention outweigh potential psychological harms. This study investigated whether genetic counseling and test reporting for the
CDKN2A/p16
mutation, which confers highly elevated melanoma risk, improved sun protection without inducing distress. Eighteen minors (
M
age
= 12.4,
SD
= 1.9) from melanoma-prone families completed measures of protective behavior and distress at baseline, 1 week (distress only), 1 month, and 1 year following test disclosure. Participants and their mothers were individually interviewed on the psychological and behavioral impact of genetic testing 1 month and 1 year post-disclosure. Carriers (
n
= 9) and noncarriers (
n
= 9) reported significantly fewer sunburns and a greater proportion reported sun protection adherence between baseline and 1 year post-disclosure; results did not vary by mutation status. Anxiety symptoms remained low post-disclosure, while depressive symptoms and cancer worry decreased. Child and parent interviews corroborated these findings. Mothers indicated that genetic testing was beneficial (100%) because it promoted risk awareness (90.9%) and sun protection (81.8%) without making their children scared (89.9%); several noted their child’s greater independent practice of sun protection (45.4%). In this small initial study, minors undergoing
CDKN2A/p16
genetic testing reported behavioral improvements and consistently low distress, suggesting such testing may be safely implemented early in life, allowing greater opportunity for risk-reducing lifestyle changes.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Anxiety</subject><subject>Behavior change</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Cancer</subject><subject>CDKN2A/p16</subject><subject>Child</subject><subject>Children</subject><subject>Clinical Psychology</subject><subject>Early intervention</subject><subject>Ethics</subject><subject>Familial melanoma</subject><subject>Female</subject><subject>Genetic counseling</subject><subject>Genetic Counseling - psychology</subject><subject>Genetic Predisposition to Disease</subject><subject>Genetic screening</subject><subject>Genetic Testing</subject><subject>Gynecology</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Lifestyles</subject><subject>Male</subject><subject>Melanoma</subject><subject>Melanoma - diagnosis</subject><subject>Melanoma - genetics</subject><subject>Mental depression</subject><subject>Minors</subject><subject>Mothers</subject><subject>Mutation</subject><subject>Original Research</subject><subject>Prevention</subject><subject>Prone</subject><subject>Protective behavior</subject><subject>Protective factors</subject><subject>Psychological distress</subject><subject>Public Health</subject><subject>Risk Reduction Behavior</subject><subject>Skin melanoma</subject><subject>Skin Neoplasms - diagnosis</subject><subject>Skin Neoplasms - genetics</subject><subject>Sun</subject><subject>Sun protection</subject><issn>1059-7700</issn><issn>1573-3599</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqFkUFv1DAQhSMEoqXwA7ggS1y4BMZ2Zh1fkNACy6KuQKWIo-U4ztYlay92smj_PY5SqoKEOFj2yN88vZlXFE8pvKQA4lWiUEtRAp1OjSXeK04pCl5ylPJ-fgPKUgiAk-JRStcAIGukD4sTJnklkYnT4rCy3g7OkEubBnJh9yEOzm-J9i1ZhtEn209lFyLZ2F77sNPkwqXvxHmycT7ERDb6SNa7fQwHS76MnnyOYbBmcMGTb264CuNA1r4dzaTz1qUh2pQeFw863Sf75OY-K76-f3e5_FCef1qtl2_OS4PTQKbhwIHVDasEFx2n0Naa1cwwxK5B2tquwtawpsOGImrNZdViYxhUGhte8bPi9ay7H5udbY31Q9S92ke30_Gognbqzx_vrtQ2HNQCuGQVZoEXNwIx_BjzjtTOJWP7vAobxqSorOUCBC5kRp__hV6HMfo8XqYkp0IgqzNFZ8rEkFK03a0ZCmpKVc2pqpyqmlJVk4lnd6e47fgdYwbEDPx0vT3-X1F9XC0rkDhJs7kz5Sa_tfGO6X_6-QUEfb7c</recordid><startdate>201808</startdate><enddate>201808</enddate><creator>Stump, Tammy K.</creator><creator>Aspinwall, Lisa G.</creator><creator>Kohlmann, Wendy</creator><creator>Champine, Marjan</creator><creator>Hauglid, Jamie</creator><creator>Wu, Yelena P.</creator><creator>Scott, Emily</creator><creator>Cassidy, Pamela</creator><creator>Leachman, Sancy A.</creator><general>Springer US</general><general>Blackwell Publishing Ltd</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>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</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>ALSLI</scope><scope>AN0</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>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2S</scope><scope>M7P</scope><scope>NAPCQ</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-5045-1796</orcidid></search><sort><creationdate>201808</creationdate><title>Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress</title><author>Stump, Tammy K. ; Aspinwall, Lisa G. ; Kohlmann, Wendy ; Champine, Marjan ; Hauglid, Jamie ; Wu, Yelena P. ; Scott, Emily ; Cassidy, Pamela ; Leachman, Sancy A.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5185-cb303028b24737f310d8a282c255fb51def45dc2bf5b155aa394d5bc204a5b343</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Anxiety</topic><topic>Behavior change</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedicine</topic><topic>Cancer</topic><topic>CDKN2A/p16</topic><topic>Child</topic><topic>Children</topic><topic>Clinical Psychology</topic><topic>Early intervention</topic><topic>Ethics</topic><topic>Familial melanoma</topic><topic>Female</topic><topic>Genetic counseling</topic><topic>Genetic Counseling - psychology</topic><topic>Genetic Predisposition to Disease</topic><topic>Genetic screening</topic><topic>Genetic Testing</topic><topic>Gynecology</topic><topic>Human Genetics</topic><topic>Humans</topic><topic>Lifestyles</topic><topic>Male</topic><topic>Melanoma</topic><topic>Melanoma - diagnosis</topic><topic>Melanoma - genetics</topic><topic>Mental depression</topic><topic>Minors</topic><topic>Mothers</topic><topic>Mutation</topic><topic>Original Research</topic><topic>Prevention</topic><topic>Prone</topic><topic>Protective behavior</topic><topic>Protective factors</topic><topic>Psychological distress</topic><topic>Public Health</topic><topic>Risk Reduction Behavior</topic><topic>Skin melanoma</topic><topic>Skin Neoplasms - diagnosis</topic><topic>Skin Neoplasms - genetics</topic><topic>Sun</topic><topic>Sun protection</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Stump, Tammy K.</creatorcontrib><creatorcontrib>Aspinwall, Lisa G.</creatorcontrib><creatorcontrib>Kohlmann, Wendy</creatorcontrib><creatorcontrib>Champine, Marjan</creatorcontrib><creatorcontrib>Hauglid, Jamie</creatorcontrib><creatorcontrib>Wu, Yelena P.</creatorcontrib><creatorcontrib>Scott, Emily</creatorcontrib><creatorcontrib>Cassidy, Pamela</creatorcontrib><creatorcontrib>Leachman, Sancy A.</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 Social Sciences Premium Collection</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>Nursing & Allied Health Database</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>ProQuest Pharma Collection</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</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>Social Science Premium Collection</collection><collection>British Nursing Database</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>Sociology Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>ProQuest Biological Science Collection</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Psychology Database</collection><collection>Sociology Database</collection><collection>Biological Science Database</collection><collection>Nursing & Allied Health Premium</collection><collection>Biotechnology and BioEngineering Abstracts</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>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Journal of genetic counseling</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Stump, Tammy K.</au><au>Aspinwall, Lisa G.</au><au>Kohlmann, Wendy</au><au>Champine, Marjan</au><au>Hauglid, Jamie</au><au>Wu, Yelena P.</au><au>Scott, Emily</au><au>Cassidy, Pamela</au><au>Leachman, Sancy A.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress</atitle><jtitle>Journal of genetic counseling</jtitle><stitle>J Genet Counsel</stitle><addtitle>J Genet Couns</addtitle><date>2018-08</date><risdate>2018</risdate><volume>27</volume><issue>4</issue><spage>955</spage><epage>967</epage><pages>955-967</pages><issn>1059-7700</issn><issn>1573-3599</issn><eissn>1573-3599</eissn><abstract>Genetic testing of minors is advised only for conditions in which benefits of early intervention outweigh potential psychological harms. This study investigated whether genetic counseling and test reporting for the
CDKN2A/p16
mutation, which confers highly elevated melanoma risk, improved sun protection without inducing distress. Eighteen minors (
M
age
= 12.4,
SD
= 1.9) from melanoma-prone families completed measures of protective behavior and distress at baseline, 1 week (distress only), 1 month, and 1 year following test disclosure. Participants and their mothers were individually interviewed on the psychological and behavioral impact of genetic testing 1 month and 1 year post-disclosure. Carriers (
n
= 9) and noncarriers (
n
= 9) reported significantly fewer sunburns and a greater proportion reported sun protection adherence between baseline and 1 year post-disclosure; results did not vary by mutation status. Anxiety symptoms remained low post-disclosure, while depressive symptoms and cancer worry decreased. Child and parent interviews corroborated these findings. Mothers indicated that genetic testing was beneficial (100%) because it promoted risk awareness (90.9%) and sun protection (81.8%) without making their children scared (89.9%); several noted their child’s greater independent practice of sun protection (45.4%). In this small initial study, minors undergoing
CDKN2A/p16
genetic testing reported behavioral improvements and consistently low distress, suggesting such testing may be safely implemented early in life, allowing greater opportunity for risk-reducing lifestyle changes.</abstract><cop>New York</cop><pub>Springer US</pub><pmid>29349527</pmid><doi>10.1007/s10897-017-0185-5</doi><tpages>13</tpages><orcidid>https://orcid.org/0000-0002-5045-1796</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of genetic counseling, 2018-08, Vol.27 (4), p.955-967 |
| issn | 1059-7700 1573-3599 1573-3599 |
| language | eng |
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| source | MEDLINE; SpringerNature Journals; Access via Wiley Online Library; Applied Social Sciences Index & Abstracts (ASSIA) |
| subjects | Adolescent Adult Anxiety Behavior change Biomedical and Life Sciences Biomedicine Cancer CDKN2A/p16 Child Children Clinical Psychology Early intervention Ethics Familial melanoma Female Genetic counseling Genetic Counseling - psychology Genetic Predisposition to Disease Genetic screening Genetic Testing Gynecology Human Genetics Humans Lifestyles Male Melanoma Melanoma - diagnosis Melanoma - genetics Mental depression Minors Mothers Mutation Original Research Prevention Prone Protective behavior Protective factors Psychological distress Public Health Risk Reduction Behavior Skin melanoma Skin Neoplasms - diagnosis Skin Neoplasms - genetics Sun Sun protection |
| title | Genetic Test Reporting and Counseling for Melanoma Risk in Minors May Improve Sun Protection Without Inducing Distress |
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