Disclosing the Disclosure: Factors Associated With Communicating the Results of Genetic Susceptibility Testing for Alzheimer's Disease

References

• Bates , B. R. ( 2005 ). Care of the self and patient participation in genetic discourse: A Foucauldian reading of the Surgeon General's “My Family Health Portrait” program . Journal of Genetic Counseling , 14 ( 6 ), 423 – 434 .
   PubMedGoogle Scholar
• Beery , T. A. , & Williams , J. K. ( 2007 ). Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders . Genetic Testing , 11 ( 2 ), 111 – 123 .
   PubMedGoogle Scholar
• Bretsky , P. , Guralnik , J. M. , Launer , L. , Albert , M. , & Seeman , T. E. ( 2003 ). The role of APOE-?4 in longitudinal cognitive decline: MacArthur studies of successful aging . Neurology , 60 ( 7 ), 1077 – 1081 .
   PubMed Web of Science ®Google Scholar
• Brodaty , H. , Conneally , M. , Gauthier , S. , Jennings , C. , Lennox , A. , et al. . ( 1995 ). Consensus statement on predictive testing for Alzheimer disease . Alzheimer Disease and Associated Disorders , 9 ( 4 ), 182 – 187 .
   PubMedGoogle Scholar
• Burke , W. ( 2002 ). Genetic testing . New England Journal of Medicine , 347 ( 23 ), 1867 – 1875 .
   PubMedGoogle Scholar
• Burke , W. , & Emery , J. ( 2002 ). Genetics education for primary-care providers . Nature Reviews Genetics , 3 ( 7 ), 561 – 566 .
   PubMed Web of Science ®Google Scholar
• Burke , W. , & Zimmern , R. L. ( 2004 ). Ensuring the appropriate use of genetic tests . Nature Reviews Genetics , 5 ( 12 ), 955 – 959 .
   PubMed Web of Science ®Google Scholar
• Christensen , K. , & Murray , J. C. ( 2007 ). Focus on research: What genome-wide association studies can do for medicine . New England Journal of Medicine , 356 ( 11 ), 1094 – 1097 .
   PubMedGoogle Scholar
• Claes , 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 Part A , 116 ( 1 ), 11 – 19 .
   Web of Science ®Google Scholar
• Clarke , A. , Richards , M. , Kerzin-Storrar , L. , Halliday , J. , Young , M. A. , et al. . ( 2005 ). Genetic professionals' reports of nondisclosure of genetic risk information within families . European Journal of Human Genetics , 13 ( 5 ), 556 – 562 .
   PubMed Web of Science ®Google Scholar
• Clayton , E. W. ( 2003 ). Ethical, legal, and social implications of genomic medicine . New England Journal of Medicine , 349 ( 6 ), 562 – 569 .
   PubMed Web of Science ®Google Scholar
• Di Prospero , L. S. , Seminsky , M. , Honeyford , J. , Doan , B. , Franssen , E. , et al. . ( 2001 ). Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: Findings from a focus group and a needs-assessment survey . Canadian Medical Association Journal , 164 ( 7 ), 1005 – 1009 .
   Google Scholar
• Dugan , R. B. , Wiesner , G. L. , Juengst , E. T. , O'Riordan , M. , Matthews , A. L. , & Robin , N. H. ( 2003 ). Duty to warn at-risk relatives for genetic disease: Genetic counselors' clinical experience . American Journal of Medical Genetics Part C , 119 ( 1 ), 27 – 34 .
   Google Scholar
• Duggan , A. ( 2006 ). Understanding interpersonal communication processes across health contexts: Advances in the last decade and challenges for the next decade . Journal of Health Communication , 11 ( 1 ), 93 – 108 .
   PubMed Web of Science ®Google Scholar
• Eckert , S. L. , Katzen , H. , Roberts , J. S. , Barber , M. , Ravdin , L. D. , et al. . ( 2006 ). Recall of disclosed apolipoprotein E genotype and lifetime risk estimate for Alzheimer's disease: The REVEAL study . Genetics in Medicine , 8 ( 12 ), 746 .
   PubMedGoogle Scholar
• Emery , J. , Barlow-Stewart , K. , Metcalfe , S. A. , & Sullivan , D. ( 2007 ). Genetics and preventive health care . Australian Family Physician , 36 ( 10 ), 808 – 811 .
   PubMedGoogle Scholar
• Farrer , L. A. , Cupples , L. A. , Haines , J. L. , Hyman , B. , Kukull , W. A. , et al. . ( 1997 ). Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease. A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium . Journal of the American Medical Association , 278 ( 16 ), 1349 – 1356 .
   PubMed Web of Science ®Google Scholar
• Feero , W. G. , Guttmacher , A. E. , & Collins , F. S. (2008). The genome gets personal-Almost. Journal of the American Medical Association , 299(11), 1351–1352.
   PubMed Web of Science ®Google Scholar
• Fontanarosa , P. B. , Pasche , B. , & DeAngelis , C. D. ( 2008 ). Genetics and genomics for clinicians . Journal of the American Medical Association , 299 ( 11 ), 1364 – 1365 .
   Google Scholar
• Forrest , K. , Simpson , S. A. , Wilson , B. J. , van Teijlingen , E. R. , McKee , L. , et al. . ( 2003 ). To tell or not to tell: Barriers and facilitators in family communication about genetic risk . Clinical Genetics , 64 ( 4 ), 317 – 326 .
   PubMed Web of Science ®Google Scholar
• Fulkerson , J. A. , Story , M. , Mellin , A. , Leffert , N. , Neumark-Sztainer , D. , & French , S. A. ( 2006 ). Family dinner meal frequency and adolescent development: Relationships with developmental assets and high-risk behaviors . Journal of Adolescent Health , 39 ( 3 ), 337 – 345 .
   PubMed Web of Science ®Google Scholar
• Genetics and Public Policy Center . ( 2007, April 24 ). U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination. Retrieved 12 May 2008, from http://www.dnapolicy.org/resources/GINAPublic_Opinion_Genetic_Information_Discrimination.pdf
   Google Scholar
• Green , R. C. , Clarke , V. C. , Thompson , N. J. , Woodard , J. L. , & Letz , R. ( 1997 ). Early detection of Alzheimer disease: Methods, markers, and misgivings . Alzheimer Disease and Associated Disorders , 11 ( Suppl 5 ), S1–5; discussion S37–39.
   Google Scholar
• Hallowell , N. , Ardern-Jones , A. , Eeles , R. , Foster , C. , Lucassen , A. , et al. . ( 2005 ). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: Patterns, priorities and problems . Clinical Genetics , 67 ( 6 ), 492 – 502 .
   PubMed Web of Science ®Google Scholar
• Hamilton , R. J. , Bowers , B. J. , & Williams , J. K. ( 2005 ). Disclosing genetic test results to family members . Journal of Nursing Scholarship , 37 ( 1 ), 18 – 24 .
   PubMed Web of Science ®Google Scholar
• Hendrie , H. C. , Albert , M. S. , Butters , M. A. , Gao , S. , Knopman , D. S. , et al. . ( 2006 ). The NIH Cognitive and Emotional Health Project . Alzheimers & Dementia , 2 ( 1 ), 12 – 32 .
   PubMedGoogle Scholar
• Hoffrage , U. , Lindsey , S. , Hertwig , R. , & Gigerenzer , G. ( 2000 ). Communicating statistical information . Science , 290 ( 5500 ), 2261 – 2262 .
   PubMed Web of Science ®Google Scholar
• Hughes , C. , Lerman , C. , Schwartz , M. , Peshkin , B. N. , Wenzel , L. , et al. . ( 2002 ). 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 .
   PubMed Web of Science ®Google Scholar
• Jarvinen , H. J. , Aarnio , M. , Mustonen , H. , AktanCollan , K. , Aaltonen , L. A. , et al. . ( 2000 ). Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer . Gastroenterology , 118 ( 5 ), 829 – 834 .
   PubMed Web of Science ®Google Scholar
• Kahneman , D. , Slovic , P. , & Tversky , A. ( 1982 ). Judgment under uncertainty: Heuristics and biases . Cambridge : Cambridge University Press .
   Google Scholar
• Koehly , L. M. , Peters , J. , Kuhn , N. , Hoskins , L. , Letocha , A. , et al. . ( 2008 ). Sisters in hereditary breast and ovarian cancer families: Communal coping, social integration, and psychological well-being . Psychooncology , 17 , 812 – 821 .
   PubMed Web of Science ®Google Scholar
• Koehly , L. M. , Peterson , S. K. , Watts , B. G. , Kempf , K. K. G. , Vernon , S. W. , & Gritz , E. R. ( 2003 ). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning . Cancer Epidemiology, Biomarkers and Prevention , 12 ( 4 ), 304 – 313 .
   PubMed Web of Science ®Google Scholar
• Lunshof , J. E. , Chadwick , R. , Vorhaus , D. B. , & Church , G. M. ( 2008 ). From genetic privacy to open consent . Nature Reviews Genetics , 9 ( 5 ), 406 – 411 .
   PubMed Web of Science ®Google Scholar
• MacDonald , 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 . Genetic Medicine , 9 ( 5 ), 275 – 282 .
   PubMedGoogle Scholar
• McGivern , 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 . Genetic Medicine , 6 ( 6 ), 503 – 509 .
   PubMedGoogle Scholar
• Menasha , J. D. , Schechter , C. , & Willner , J. ( 2000 ). Genetic testing: A physician's perspective . Mount Sinai Journal of Medicine , 67 ( 2 ), 144 – 151 .
   PubMedGoogle Scholar
• Neumann , P. J. , Hammitt , J. K. , Mueller , C. , Fillit , H. M. , Hill , J. , et al.. (2001). Public attitudes about genetic testing for Alzheimer's disease. Health Affairs , 20(5), 252–264.
   Google Scholar
• Nippert , I. , & Schlegelberger , B. ( 2003 ). Women's experiences of undergoing BRCA1 and BRCA2 testing: Organisation of the German Hereditary Breast and Ovarian Cancer Consortium Survey and preliminary data from Munster . Community Genetics , 6 ( 4 ), 249 – 258 .
   PubMedGoogle Scholar
• Offit , K. ( 2008 ). Genomic profiles for disease risk: Predictive or premature? Journal of the American Medical Association , 299 ( 11 ), 1353 – 1355 .
   Web of Science ®Google Scholar
• Packard , C. J. , Westendorp , R. G. J. , Stott , D. J. , Caslake , M. J. , Murray , H. M. , et al. . ( 2007 ). Association between Apolipoprotein E4 and cognitive decline in elderly adults . Journal of the American Geriatrics Society , 55 ( 11 ), 1777 – 1785 .
   PubMed Web of Science ®Google Scholar
• Patenaude , 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 .
   PubMed Web of Science ®Google Scholar
• Petronio , S. ( 2002 ). Boundaries of privacy: Dialectics of disclosure . Albany : State University of New York Press .
   Google Scholar
• Post , S. G. , Whitehouse , P. J. , Binstock , R. H. , Bird , T. D. , Eckert , S. K. , et al. . ( 1997 ). The clinical introduction of genetic testing for Alzheimer's disease . Journal of the American Medical Association , 277 ( 10 ), 832 – 836 .
   Google Scholar
• Relkin , N. R. ( 1996 ). Apolipoprotein E genotyping in Alzheimer's disease: National Institute on Aging/Alzheimer's Association Working Group . Lancet , 347 ( 9008 ), 1091 – 1095 .
   PubMedGoogle Scholar
• Rimal , R. N. , & Flora , J. A. ( 1998 ). Bidirectional familial influences in dietary behavior: Test of a model of campaign influences . Human Communication Research , 24 ( 4 ), 610 – 637 .
   Google Scholar
• Roberts , J. S. ( 2000 ). Anticipating response to predictive genetic testing for Alzheimer's disease: A survey of first-degree relatives . Gerontologist , 40 ( 1 ), 43 – 52 .
   PubMed Web of Science ®Google Scholar
• Roberts , J. S. , & Connell , C. M. ( 2000 ). Illness representations among first-degree relatives of people with Alzheimer disease . Alzheimer Disease Associated Disorders , 14 ( 3 ), 129 – 136 .
   PubMed Web of Science ®Google Scholar
• Roberts , J. S. , LaRusse , S. A. , Katzen , H. , Whitehouse , P. J. , Barber , M. , et al. . ( 2003 ). Reasons for seeking genetic susceptibility testing among first-degree relatives of people with Alzheimer disease . Alzheimer Disease Associated Disorders , 17 ( 2 ), 86 – 93 .
   PubMedGoogle Scholar
• Rolland , J. S. , & Williams , J. K. ( 2005 ). Toward a biopsychosocial model for 21st-century genetics . Family Process , 44 ( 1 ), 3 – 24 .
   PubMed Web of Science ®Google Scholar
• Rothman , A. J. , & Kiviniemi , M. T. ( 1999 ). Treating people with information: An analysis and review of approaches to communicating health risk information . Journal of the National Cancer Institute Monographs , 25 , 44 – 51 .
   PubMedGoogle Scholar
• Scott , L. J. , Mohlke , K. L. , Bonnycastle , L. L. , Willer , C. J. , Li , Y. , et al. . ( 2007 ). A genome-wide association study of type 2 diabetes in Finns detects multiple susceptibility variants . Science , 316 ( 5829 ), 1341 – 1345 .
   PubMed Web of Science ®Google Scholar
• Segal , J. , Esplen , M. J. , Toner , B. , Baedorf , S. , Narod , S. , & Butler , K. ( 2004 ). An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers . American Journal of Medical Genetics Part A , 125 ( 3 ), 267 – 272 .
   Google Scholar
• Smith , C. O. , Lipe , H. P. , & Bird , T. D. ( 2004 ). Impact of presymptomatic genetic testing for hereditary ataxia and neuromuscular disorders . Archives of Neurology , 61 ( 6 ), 875 – 880 .
   PubMedGoogle Scholar
• SPSS Inc . ( 2005 ). SPSS for Windows ( Version 14.0.2. ). Chicago : Author .
   Google Scholar
• Stoffel , E. M. , Ford , B. , Mercado , R. C. , Punglia , D. , Kohlmann , W. , et al. . ( 2008 ). Sharing genetic test results in Lynch Syndrome: Communication with close and distant relatives . Clincal Gastroenterology and Hepatology , 6 ( 3 ), 333 – 338 .
   PubMed Web of Science ®Google Scholar
• Taylor , S. ( 2005 ). Gender differences in attitudes among those at risk for Huntington's disease . Genetic Testing , 9 ( 2 ), 152 – 157 .
   PubMedGoogle Scholar
• Tucker , D. C. , Acton , R. T. , Press , N. , Ruggiero , A. , Reiss , J. A. , et al. . ( 2006 ). Predictors of belief that genetic test information about hemochromatosis should be shared with family members . Genetic Testing , 10 ( 1 ), 50 – 59 .
   PubMedGoogle Scholar
• van Oostrom , I. , Meijers-Heijboer , H. , Duivenvoorden , H. J. , Brocker-Vriends , A. H. , van Asperen , C. J. , et al.. (2007a). A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships. Psychooncology , 16(4), 320–328.
   PubMedGoogle Scholar
• van Oostrom , I. , Meijers-Heijboer , H. , Duivenvoorden , H. J. , Brocker-Vriends , A. H. , van Asperen , C. J. , et al. . ( 2007b ). Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: A prospective study . Clinical Genetics , 71 ( 1 ), 35 – 42 .
   PubMedGoogle Scholar
• Wagner Costalas , J. , Itzen , M. , Malick , J. , Babb , J. S. , Bove , B. , et al. . ( 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 , 119 ( 1 ), 11 – 18 .
   Google Scholar
• Wolfberg , A. J. ( 2006 ). Genes on the web—Direct-to-consumer marketing of genetic testing . New England Journal of Medicine , 355 ( 6 ), 543 – 545 .
   PubMedGoogle Scholar
• Zick , C. D. , Mathews , C. J. , Roberts , J. S. , Cook-Deegan , R. , Pokorski , R. J. , & Green , R. C. ( 2005 ). Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior . Health Affairs , 24 ( 2 ), 483 .
   PubMedGoogle Scholar
• The views expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the Department of Health and Human Services, nor the U.S. Government.
   Google Scholar