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Family Communication of BRCA1/2 Results and Family Uptake of BRCA1/2 Testing in a Diverse Population of BRCA1/2 Carriers

dc.contributor.authorFehniger, Julia
dc.contributor.authorLin, Feng
dc.contributor.authorBeattie, Mary S.
dc.contributor.authorJoseph, Galen
dc.contributor.authorKaplan, Celia
dc.date.accessioned2019-01-15T20:28:33Z
dc.date.available2019-01-15T20:28:33Z
dc.date.issued2013-10
dc.identifier.citationFehniger, Julia; Lin, Feng; Beattie, Mary S.; Joseph, Galen; Kaplan, Celia (2013). "Family Communication of BRCA1/2 Results and Family Uptake of BRCA1/2 Testing in a Diverse Population of BRCA1/2 Carriers." Journal of Genetic Counseling 22(5): 603-612.
dc.identifier.issn1059-7700
dc.identifier.issn1573-3599
dc.identifier.urihttps://hdl.handle.net/2027.42/147039
dc.description.abstractPrevious studies examining communication of BRCA1/2 results with relatives and family uptake of BRCA1/2 testing have sampled from predominantly white, high SES cohorts ascertained solely from tertiary care centers. No studies have focused on family communication and testing among relatives of diverse BRCA1/2 carriers. We conducted structured interviews with 73 BRCA1/2 carriers identified at a public hospital and a tertiary cancer center. We asked participants if each first‐ and second‐degree relative was aware of their BRCA1/2 results and whether or not each relative had tested. Generalized estimating equations identified rates and predictors of family communication and testing. Participants disclosed their test results to 73 % of 606 eligible relatives and 31 % of 514 eligible relatives tested. Communication and testing rates were similar for relatives of participants from the public hospital and the tertiary cancer center. Hospital site was not a significant predictor of either result disclosure or relative uptake of testing. African American and Asian/Pacific Islander participants were significantly less likely to disclose their results to their relatives; relatives of African American participants were significantly less likely to test. Addressing these disparities will require further research into the best ways to facilitate family communication and counsel at‐risk relatives of racially and socioeconomically diverse BRCA1/2 mutation carriers.
dc.publisherSpringer US
dc.publisherWiley Periodicals, Inc.
dc.subject.otherDisparities
dc.subject.otherBRCA1
dc.subject.otherBRCA2
dc.subject.otherHereditary breast and ovarian cancer
dc.subject.otherFamily communication
dc.subject.otherFamily testing
dc.titleFamily Communication of BRCA1/2 Results and Family Uptake of BRCA1/2 Testing in a Diverse Population of BRCA1/2 Carriers
dc.typeArticleen_US
dc.rights.robotsIndexNoFollow
dc.subject.hlbsecondlevelHuman Genetics
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/147039/1/jgc40603.pdf
dc.identifier.doi10.1007/s10897-013-9592-4
dc.identifier.sourceJournal of Genetic Counseling
dc.identifier.citedreferenceOffit, K., Groeger, T., Turner, S., Wadsworth, E. A., & Weiser, M. A. ( 2004 ). The “duty to warn” a patient’s family members about hereditary disease risks. Journal of the American Medical Association, 292 ( 12 ), 1469 – 1473.
dc.identifier.citedreferenceKauff, N. D., Mitra, N., Robson, M. E., Hurley, K. E., Chuai, S., Goldfrank, D., et al. ( 2005 ). Risk of ovarian cancer in BRCA1 and BRCA2 mutation‐negative hereditary breast cancer families. Journal of the National Cancer Institute, 97 ( 18 ), 1382 – 1384.
dc.identifier.citedreferenceKurian, A. W., Gong, G. D., Chun, N. M., Mills, M. A., Staton, A. D., Kingham, K. E., et al. ( 2008 ). Performance of BRCA1/2 mutation prediction models in Asian Americans. Journal of Clinical Oncology 26 ( 29 ), 4752 – 4758.
dc.identifier.citedreferenceKurian, A. W., Gong, G. D., John, E. M., Johnston, D. A., Felberg, A., West, D. W., et al. ( 2011 ). Breast cancer risk for noncarriers of family‐specific BRCA1 and BRCA2 mutations: findings from the breast cancer family registry. Journal of Clinical Oncology, 29 ( 34 ), 4505 – 4509.
dc.identifier.citedreferenceLandsbergen, K., Verhaak, C., Kraaimaat, F., & Hoogerbrugge, N. ( 2005 ). Genetic uptake in BRCA‐mutation families is related to emotional and behavioral communication characteristics of index patients. Familial Cancer, 4 ( 2 ), 115 – 119.
dc.identifier.citedreferenceLee, R., Beattie, M., Crawford, B., Mak, J., Stewart, N., Komaromy, M., et al. ( 2005 ). Recruitment, genetic counseling, and BRCA1/2 testing for underserved women at a public hospital. Genetic Testing, 9 ( 4 ), 306 – 312.
dc.identifier.citedreferenceLerman, C., Hughes, C., Benkendorf, J. L., Biesecker, B., Kerner, J., Willison, J., et al. ( 1999 ). Racial differences in testing motivation and psychological distress following pretest education for BRCA1 gene testing. Cancer Epidemiology, Biomarkers & Prevention, 8 ( 4 Pt 2 ), 361 – 367.
dc.identifier.citedreferenceLu, K., Kauff, N., Powell, C. B., Chen, L. M., Cass, I., Lancaster, J., et al. ( 2009 ). American college of obstetricians and gynecologists practice bulletin No. 103: hereditary breast and ovarian cancer syndrome. Obstetrics and Gynecology, 113 ( 4 ), 957 – 966.
dc.identifier.citedreferenceMacDonald, D. J., Sarna, L., van Servellen, G., Bastani, R., Giger, J. N., & Weitzel, J. N. ( 2007 ). Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genetics in Medicine, 9 ( 5 ), 275 – 282.
dc.identifier.citedreferenceMcGivern, B., Everett, J., Yager, G. G., Baumiller, R. C., Hafertepen, A., & Saal, H. M. ( 2004 ). Family communication about positive BRCA1 and BRCA2 genetic test results. Genetics in Medicine, 6 ( 6 ), 503 – 509.
dc.identifier.citedreferenceNarod, S. ( 2009 ). Screening for BRCA1/2 and BRCA2 mutations in breast cancer patients from Mexico: the public health perspective. Salud Pública de México, 51 ( Suppl 2 ), S191 – S196.
dc.identifier.citedreferenceNathanson, K. L., & Domchek, S. M. ( 2011 ). Therapeutic approaches for women predisposed to breast cancer. Annual Review of Medicine, 62, 295 – 306.
dc.identifier.citedreferenceNational Comprehensive Cancer Network ( 2011 ) Genetic/familial high‐risk assessment: breast and ovarian, version 1. Practice guidelines. Available at: http://www.nccn.org. Accessed 23 April 2012.
dc.identifier.citedreferencePatenaude, A.F., Dorval, M., DiGianni, L.S., Schneider, K.A., Chittenden, A., & Garber, J. E. ( 2006 ). Sharing BRCA1/2 test results with first‐degree relatives: factors predicting who women tell. Journal of Clinical Oncology, 24 ( 4 ), 700 – 706.
dc.identifier.citedreferencePlon, S. E., Cooper, H. P., Parks, B., Dar, S., Kelly, P. A., Weinberg, A. D., et al. ( 2011 ). Genetic testing and cancer risk management recommendations by physicians for at‐risk relatives. Genetics in Medicine, 13 ( 2 ), 148 – 154.
dc.identifier.citedreferenceRatnayake, P., Wakefield, C. E., Meiser, B., Suthers, G., Price, M. A., Duffy, J., et al. ( 2011 ). An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations. Familial Cancer, 10 ( 1 ), 97 – 105.
dc.identifier.citedreferenceRebbeck, T. R., Kauff, N. D., & Domchek, S. M. ( 2009 ). Meta‐analysis of risk‐reduction estimates associated with risk‐reducing salpingo‐oophorectomy in BRCA1 or BRCA2 mutation carriers. Journal of the National Cancer Institute, 101 ( 2 ), 80 – 87.
dc.identifier.citedreferenceRobson, M. E., Storm, C. D., Weitzel, J., Wollins, D. S., & Offit, K. ( 2010 ). American society of clinical oncology policy statement update: genetic and genomic testing for cancer susceptibility. Journal of Clinical Oncology, 28 ( 5 ), 893 – 901.
dc.identifier.citedreferenceSermijn, E., Goelen, G., Teugels, E., Kaufman, L., Vonduelle, M., Neyns, B., et al. ( 2004 ). The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation. Journal of Medical Genetics, 41 ( 3 ), e23.
dc.identifier.citedreferenceSusswein, L. R., Skrzynia, C., Lange, L. A., Booker, J. K., Graham, M. L., & Evans, J. P. ( 2008 ). Increased uptake of BRCA1/2 genetic testing among African American women with a recent diagnosis of breast cancer. Journal of Clinical Oncology, 26 ( 1 ), 32 – 36.
dc.identifier.citedreferenceThompson, H. B., Jandorf, L., & Redd, W. ( 2003 ). Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina, and Caucasian women. Patient Education and Counseling, 51 ( 3 ), 217 – 227.
dc.identifier.citedreferenceU.S. Preventive Services Task Force. ( 2005 ). Genetic risk assessment and BRCA1/2 mutation testing for breast and ovarian cancer susceptibility: recommendation statement. Annals of Internal Medicine, 143 ( 5 ), 355 – 361.
dc.identifier.citedreferenceVos, J., Menko, F., Jansen, A. M., van Asperen, C. J., Stiggelbout, A. M., & Tibben, A. ( 2011 ). A whisper‐game perspective on the family communication of DNA‐test results: a retrospective study on the communication process of BRCA1/2‐test results between proband and relatives. Familial Cancer, 10 ( 1 ), 87 – 96.
dc.identifier.citedreferenceWagner‐Costalas, J., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., & Daly, M. B. ( 2003 ). Communication of BRCA1 and BRCA2 results to at‐risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C, 11 – 18.
dc.identifier.citedreferenceYoon, S. Y., Thong, M. K., Taib, N. A., Yip, C. H., & Teo, S. H. ( 2011 ). Genetic counseling for patients and families with hereditary breast and ovarian cancer in a developing Asian country: an observational descriptive study. Familial Cancer, 10 ( 2 ), 199 – 205.
dc.identifier.citedreferenceArmstrong, K., Weber, B., Stopfer, J., Calzone, K., Putt, M., Coyne, J., & Schwartz, S. ( 2003 ). Early use of clinical BRCA1/2 testing: associations with race and breast cancer risk. American Journal of Medical Genetics, 117A, 154 – 160.
dc.identifier.citedreferenceArmstrong, K., Micco, E., Carney, A., Stopfer, J., & Putt, M. ( 2005 ). Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. Journal of the American Medical Association, 293 ( 14 ), 1729 – 1736.
dc.identifier.citedreferenceBarlow‐Stewart, K., Yeo, S. S., Meiser, B., et al. ( 2006 ). Toward cultural competence in cancer genetic counseling and genetics education: lessons learned from Chinese‐Australians. Genetics in Medicine, 8 ( 1 ), 24 – 31.
dc.identifier.citedreferenceBerliner, J. L., & Fay, A. M. ( 2007 ). Risk assessment and genetic counseling for hereditary breast and ovarian cancer: recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 16 ( 3 ), 241 – 260.
dc.identifier.citedreferenceBiesecker, B. B., Ishibe, N., Hadley, D. W., Giambarresi, T. R., Kase, R. G., Lerman, C., et al. ( 2000 ). Psychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families. American Journal of Medical Genetics, 93 ( 4 ), 257 – 263.
dc.identifier.citedreferenceBlandy, C., Chabal, F., Stoppa‐Lyonnet, D., & Julian‐Reynier, C. ( 2003 ). Testing participation in BRCA1/2 positive families: initiator role of index cases. Genetic Testing, 7 ( 3 ), 225 – 233.
dc.identifier.citedreferenceBurke, W., Daly, M., Garber, J., Botkin, J., Kahn, M. J., Lynch, P., et al. ( 1997 ). Recommendations for follow‐up care of individuals with an inherited predisposition to cancer. Journal of the American Medical Association, 277 ( 12 ), 997 – 1003.
dc.identifier.citedreferenceCheung, E. L., Olson, A. D., Yu, T. M., Han, P. Z., & Beattie, M. S. ( 2010 ). Communication of BRCA1/2 results and family testing in 1,103 high‐risk women. Cancer Epidemiology, Biomarkers & Prevention, 19 ( 9 ), 2211 – 2219.
dc.identifier.citedreferenceClaes, E., Evers‐Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. ( 2003 ). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics, 116A, 11 – 19.
dc.identifier.citedreferenceDeLeonMatsuda, M.L., Liede, A., Kwan, E., Mapua, C.A., Cutiongco, E. M., Tan, A., Borg, A., & Narod, S. A. ( 2002 ). BRCA1 and BRCA2 mutations among breast cancer patients from the Philippines. International Journal of Cancer, 98 ( 4 ), 596 – 603.
dc.identifier.citedreferenceDomchek, S. M., Friebel, T. M., Singer, C. F., Evans, D. G., Lynch, H. T., & Isaacs, C. ( 2010 ). Association of risk‐reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality. Journal of the American Medical Association, 304 ( 9 ), 967 – 975.
dc.identifier.citedreferenceFinlay, E., Stopfer, J. E., Burlingame, E., Evans, K. G., Nathanson, K. L., Weber, B. L., et al. ( 2008 ). Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genetic Testing, 12 ( 1 ), 81 – 92.
dc.identifier.citedreferenceHaffty, B. G., Choi, D. H., Goyal, S., Silber, A., Ranieri, K., Matloff, E., et al. ( 2009 ). Breast cancer in young women (YBC): prevalence of BRCA1/2 mutations and risk of secondary malignancies across diverse racial groups. Annals of Oncology, 20 ( 10 ), 1653 – 1659.
dc.identifier.citedreferenceHarris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. ( 2009 ). Research electronic data capture (REDCap) — a metadata‐driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42 ( 2 ), 377 – 381.
dc.identifier.citedreferenceHarvey, S. L., Milne, R. L., McLachlan, S. A., Friedlander, M. L., Birch, K. E., & Weideman, P. ( 2011 ). Prospective study of breast cancer risk for mutation negative women from BRCA1 or BRCA2 mutation positive families. Breast Cancer Research and Treatment, 130 ( 3 ), 1057 – 1061.
dc.identifier.citedreferenceHughes, C., Lerman, C., Schwartz, M., Peshkin, B. N., Wenzel, L., Narod, S., et al. ( 2000 ). All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. American Journal of Medical Genetics, 107 ( 2 ), 143 – 150.
dc.identifier.citedreferenceHughes, C., Fasaye, G.A., LaSalle, V.H., & Finch, C. ( 2003 ). Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Education and Counseling, 51 ( 2 ), 107 – 114.
dc.identifier.citedreferenceKardashian, A., Fehniger, J., Creasman, J., Cheung, E., & Beattie, M. S. ( 2012 ). Pilot study of the Sharing Risk Information Tool (ShaRIT) for families with hereditary breast and ovarian cancer syndrome. Hereditary Cancer in Clinical Practice, 10, 4.
dc.owningcollnameInterdisciplinary and Peer-Reviewed


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