Family communication about positive BRCA1 and BRCA2 genetic test results
Purpose: The identification of a BRCA1 or BRCA2 genetic mutation can provide important health information to individuals who receive this result, but it can also provide crucial cancer risk information to family members. Most of the research on communication of genetic test results has focused on fi...
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Veröffentlicht in: | Genetics in medicine 2004-11, Vol.6 (6), p.503-509 |
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creator | McGivern, Bobbi Everett, Jessica Yager, Geoffrey G. Baumiller, Robert C. Hafertepen, Amanda Saal, Howard M. |
description | Purpose: The identification of a BRCA1 or BRCA2 genetic mutation can provide important health information to individuals who receive this result, but it can also provide crucial cancer risk information to family members. Most of the research on communication of genetic test results has focused on first degree relatives. The purpose of this retrospective study was to examine the process of communicating a positive BRCA1 or BRCA2 genetic test result to male and female first, second, and third degree relatives.
Methods: Participants were 38 female mutation carriers who responded to a written survey assessing the number and relationship of relatives informed, methods used to inform relatives, topics discussed, and motivations and barriers for communication.
Results: Overall, 59% (470/803) of first, second, and third degree relatives were informed. The proportion of informed parents, siblings, and offspring was nearly twice that of more distant relatives including nieces, nephews, aunts, uncles, grandchildren, and cousins (88% versus 45%; P = 0.02). The method of communication differed by the gender of the relative, as did some of the topics discussed. The most important reasons for discussing the genetic test results were (1) to inform the relatives of their risk, (2) to suggest that they be tested, and (3) to fulfill a perceived duty to inform. The major barrier to communication was little contact and/or emotionally distant relationships.
Conclusion: Female mutation carriers act on a perceived duty to inform close relatives of their positive test result; however, there is a need for genetic counseling strategies that address communication with more distant relatives. |
doi_str_mv | 10.1097/01.GIM.0000144014.91237.A1 |
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Methods: Participants were 38 female mutation carriers who responded to a written survey assessing the number and relationship of relatives informed, methods used to inform relatives, topics discussed, and motivations and barriers for communication.
Results: Overall, 59% (470/803) of first, second, and third degree relatives were informed. The proportion of informed parents, siblings, and offspring was nearly twice that of more distant relatives including nieces, nephews, aunts, uncles, grandchildren, and cousins (88% versus 45%; P = 0.02). The method of communication differed by the gender of the relative, as did some of the topics discussed. The most important reasons for discussing the genetic test results were (1) to inform the relatives of their risk, (2) to suggest that they be tested, and (3) to fulfill a perceived duty to inform. The major barrier to communication was little contact and/or emotionally distant relationships.
Conclusion: Female mutation carriers act on a perceived duty to inform close relatives of their positive test result; however, there is a need for genetic counseling strategies that address communication with more distant relatives.</description><identifier>ISSN: 1098-3600</identifier><identifier>EISSN: 1530-0366</identifier><identifier>DOI: 10.1097/01.GIM.0000144014.91237.A1</identifier><identifier>PMID: 15545746</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>BRCA1 and BRCA2 ; Communication ; Communication Barriers ; Family ; family communication ; Female ; Genes, BRCA1 ; Genes, BRCA2 ; genetic counseling ; Genetic Testing ; Humans ; Moral Obligations ; Mutation - genetics ; Retrospective Studies ; Surveys and Questionnaires</subject><ispartof>Genetics in medicine, 2004-11, Vol.6 (6), p.503-509</ispartof><rights>2004 The Author(s)</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c459t-a5d7b6a36e215608ebd8dfa1848705db4bc9ad5032aa4b99b23e9f362dce74433</citedby><cites>FETCH-LOGICAL-c459t-a5d7b6a36e215608ebd8dfa1848705db4bc9ad5032aa4b99b23e9f362dce74433</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,776,780,27903,27904,64363</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/15545746$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>McGivern, Bobbi</creatorcontrib><creatorcontrib>Everett, Jessica</creatorcontrib><creatorcontrib>Yager, Geoffrey G.</creatorcontrib><creatorcontrib>Baumiller, Robert C.</creatorcontrib><creatorcontrib>Hafertepen, Amanda</creatorcontrib><creatorcontrib>Saal, Howard M.</creatorcontrib><title>Family communication about positive BRCA1 and BRCA2 genetic test results</title><title>Genetics in medicine</title><addtitle>Genet Med</addtitle><description>Purpose: The identification of a BRCA1 or BRCA2 genetic mutation can provide important health information to individuals who receive this result, but it can also provide crucial cancer risk information to family members. Most of the research on communication of genetic test results has focused on first degree relatives. The purpose of this retrospective study was to examine the process of communicating a positive BRCA1 or BRCA2 genetic test result to male and female first, second, and third degree relatives.
Methods: Participants were 38 female mutation carriers who responded to a written survey assessing the number and relationship of relatives informed, methods used to inform relatives, topics discussed, and motivations and barriers for communication.
Results: Overall, 59% (470/803) of first, second, and third degree relatives were informed. The proportion of informed parents, siblings, and offspring was nearly twice that of more distant relatives including nieces, nephews, aunts, uncles, grandchildren, and cousins (88% versus 45%; P = 0.02). The method of communication differed by the gender of the relative, as did some of the topics discussed. The most important reasons for discussing the genetic test results were (1) to inform the relatives of their risk, (2) to suggest that they be tested, and (3) to fulfill a perceived duty to inform. The major barrier to communication was little contact and/or emotionally distant relationships.
Conclusion: Female mutation carriers act on a perceived duty to inform close relatives of their positive test result; however, there is a need for genetic counseling strategies that address communication with more distant relatives.</description><subject>BRCA1 and BRCA2</subject><subject>Communication</subject><subject>Communication Barriers</subject><subject>Family</subject><subject>family communication</subject><subject>Female</subject><subject>Genes, BRCA1</subject><subject>Genes, BRCA2</subject><subject>genetic counseling</subject><subject>Genetic Testing</subject><subject>Humans</subject><subject>Moral Obligations</subject><subject>Mutation - genetics</subject><subject>Retrospective Studies</subject><subject>Surveys and Questionnaires</subject><issn>1098-3600</issn><issn>1530-0366</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2004</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqNkEtLAzEQgIMo1tdfkMWDt12TzWvjrVZbBUUQPYdsMpXIPuomW_DfG22hRx0YZg7fPPgQuiC4IFjJK0yKxcNTgVMQxlIWipRUFlOyh44IpzjHVIj91GNV5VRgPEHHIXwkXNISH6IJ4ZxxycQRup-b1jdfme3bduy8NdH3XWbqfozZqg8--jVkNy-zKclM5367MnuHDqK3WYQQswHC2MRwig6Wpglwtq0n6G1-9zq7zx-fFw-z6WNuGVcxN9zJWhgqoCRc4ApqV7mlIRWrJOauZrVVxnFMS2NYrVRdUlBLKkpnQTJG6Qm63OxdDf3nmB7QrQ8WmsZ00I9BC4mFkrT6EyRSJBmcJfB6A9qhD2GApV4NvjXDlyZY_wjXmOgkXO-E61_hekrS8Pn2yli34HajW8MJuN0AkKSsPQw6WA-dBecHsFG73v_nzje9KpCG</recordid><startdate>20041101</startdate><enddate>20041101</enddate><creator>McGivern, Bobbi</creator><creator>Everett, Jessica</creator><creator>Yager, Geoffrey G.</creator><creator>Baumiller, Robert C.</creator><creator>Hafertepen, Amanda</creator><creator>Saal, Howard M.</creator><general>Elsevier Inc</general><scope>6I.</scope><scope>AAFTH</scope><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>8FD</scope><scope>FR3</scope><scope>P64</scope><scope>RC3</scope><scope>7X8</scope></search><sort><creationdate>20041101</creationdate><title>Family communication about positive BRCA1 and BRCA2 genetic test results</title><author>McGivern, Bobbi ; Everett, Jessica ; Yager, Geoffrey G. ; Baumiller, Robert C. ; Hafertepen, Amanda ; Saal, Howard M.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c459t-a5d7b6a36e215608ebd8dfa1848705db4bc9ad5032aa4b99b23e9f362dce74433</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2004</creationdate><topic>BRCA1 and BRCA2</topic><topic>Communication</topic><topic>Communication Barriers</topic><topic>Family</topic><topic>family communication</topic><topic>Female</topic><topic>Genes, BRCA1</topic><topic>Genes, BRCA2</topic><topic>genetic counseling</topic><topic>Genetic Testing</topic><topic>Humans</topic><topic>Moral Obligations</topic><topic>Mutation - genetics</topic><topic>Retrospective Studies</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>McGivern, Bobbi</creatorcontrib><creatorcontrib>Everett, Jessica</creatorcontrib><creatorcontrib>Yager, Geoffrey G.</creatorcontrib><creatorcontrib>Baumiller, Robert C.</creatorcontrib><creatorcontrib>Hafertepen, Amanda</creatorcontrib><creatorcontrib>Saal, Howard M.</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Technology Research Database</collection><collection>Engineering Research Database</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Genetics in medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>McGivern, Bobbi</au><au>Everett, Jessica</au><au>Yager, Geoffrey G.</au><au>Baumiller, Robert C.</au><au>Hafertepen, Amanda</au><au>Saal, Howard M.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Family communication about positive BRCA1 and BRCA2 genetic test results</atitle><jtitle>Genetics in medicine</jtitle><addtitle>Genet Med</addtitle><date>2004-11-01</date><risdate>2004</risdate><volume>6</volume><issue>6</issue><spage>503</spage><epage>509</epage><pages>503-509</pages><issn>1098-3600</issn><eissn>1530-0366</eissn><abstract>Purpose: The identification of a BRCA1 or BRCA2 genetic mutation can provide important health information to individuals who receive this result, but it can also provide crucial cancer risk information to family members. Most of the research on communication of genetic test results has focused on first degree relatives. The purpose of this retrospective study was to examine the process of communicating a positive BRCA1 or BRCA2 genetic test result to male and female first, second, and third degree relatives.
Methods: Participants were 38 female mutation carriers who responded to a written survey assessing the number and relationship of relatives informed, methods used to inform relatives, topics discussed, and motivations and barriers for communication.
Results: Overall, 59% (470/803) of first, second, and third degree relatives were informed. The proportion of informed parents, siblings, and offspring was nearly twice that of more distant relatives including nieces, nephews, aunts, uncles, grandchildren, and cousins (88% versus 45%; P = 0.02). The method of communication differed by the gender of the relative, as did some of the topics discussed. The most important reasons for discussing the genetic test results were (1) to inform the relatives of their risk, (2) to suggest that they be tested, and (3) to fulfill a perceived duty to inform. The major barrier to communication was little contact and/or emotionally distant relationships.
Conclusion: Female mutation carriers act on a perceived duty to inform close relatives of their positive test result; however, there is a need for genetic counseling strategies that address communication with more distant relatives.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>15545746</pmid><doi>10.1097/01.GIM.0000144014.91237.A1</doi><tpages>7</tpages><oa>free_for_read</oa></addata></record> |
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subjects | BRCA1 and BRCA2 Communication Communication Barriers Family family communication Female Genes, BRCA1 Genes, BRCA2 genetic counseling Genetic Testing Humans Moral Obligations Mutation - genetics Retrospective Studies Surveys and Questionnaires |
title | Family communication about positive BRCA1 and BRCA2 genetic test results |
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