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Journal of Health Communication
International Perspectives
Volume 14, 2009 - Issue 8
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ARTICLES

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

Sato Ashida Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, USACorrespondence[email protected]
,
Laura M. Koehly Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, USA
,
J. Scott Roberts Department of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, USA
,
Clara A. Chen Data Coordinating Center, Boston University School of Public Health, Boston, Massachusetts, USA
,
Susan Hiraki Department of Neurology, Boston University School of Medicine, Boston, Massachusetts, USA
&
Robert C. Green Departments of Neurology, Medicine (Genetics), and Epidemiology, Boston University Schools of Medicine and Public Health, Boston, Massachusetts, USA
Pages 768-784 | Published online: 21 Dec 2009

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Soo Jung Hong, Melody Goodman & Kimberly A. Kaphingst. (2020) Relationships of Family History-related Factors and Causal Beliefs to Cancer Risk Perception and Mammography Screening Adherence Among Medically Underserved Women. Journal of Health Communication 25:7, pages 531-542.
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Heather E. Canary, Ashley Elrick, Manusheela Pokharel, Margaret Clayton, Marjan Champine, Masha Sukovic, Soo Jung Hong & Kimberly A. Kaphingst. (2019) Family Health History Tools as Communication Resources: Perspectives from Caucasian, Hispanic, and Pacific Islander Families. Journal of Family Communication 19:2, pages 126-143.
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Articles from other publishers (20)

Kafui Adjaye-Gbewonyo, Ama de-Graft Aikins & Megan Vaughan. (2022) ‘If you sell your sickness, you will get its medicine’: Care and intrafamilial communication for chronic diseases in southern Ghana. Scientific African 18, pages e01400.
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Josephine K. Boumis & Marleah Dean. 2022. The International Encyclopedia of Health Communication. The International Encyclopedia of Health Communication 1 6 .
Lisa Hui, Cecilia Pynaker, Joanne Kennedy, Sharon Lewis, David J. Amor, Susan P. Walker, Jane Halliday, Fiona Norris, Lucy Gugasyan, Matt Regan, Anand Vasudevan, Susan Fawcett, George McGillivray, Melissa Graetz, Joanne Said, Lisa Begg, Ron Wapner & Brynn Levy. (2021) Study protocol: childhood outcomes of fetal genomic variants: the PrenatAL Microarray (PALM) cohort study. BMC Pediatrics 21:1.
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Suchetana De, Maaria Tringham, Anu Hopia, Raija Tahvonen, Anna-Maija Pietilä & Kirsi Vähäkangas. (2021) Ethical Aspects of Genotype Disclosure: Perceptions of Participants in a Nutrigenetic Study in Finland. Public Health Genomics 24:1-2, pages 33-43.
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Sherry-Ann N. Brown, Hayan Jouni & Iftikhar J. Kullo. (2019) Electronic health record access by patients as an indicator of information seeking and sharing for cardiovascular health promotion in social networks: Secondary analysis of a randomized clinical trial. Preventive Medicine Reports 13, pages 306-313.
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Victoria S. Marshe, Ilona Gorbovskaya, Sarah Kanji, Maxine Kish & Daniel J. Müller. (2018) Clinical implications of APOE genotyping for late-onset Alzheimer’s disease (LOAD) risk estimation: a review of the literature. Journal of Neural Transmission 126:1, pages 65-85.
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Elvira D’Andrea, Tyra Lagerberg, Corrado De Vito, Erica Pitini, Carolina Marzuillo, Azzurra Massimi, Maria Rosaria Vacchio, Paola Grammatico & Paolo Villari. (2018) Patient experience and utility of genetic information: a cross-sectional study among patients tested for cancer susceptibility and thrombophilia. European Journal of Human Genetics 26:4, pages 518-526.
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Joshua D. Grill & Jason Karlawish. (2017) Study partners should be required in preclinical Alzheimer’s disease trials. Alzheimer's Research & Therapy 9:1.
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S. A. S. A. Bemelmans, K. Tromp, E. M. Bunnik, R. J. Milne, S. Badger, C. Brayne, M. H. Schermer & E. Richard. (2016) Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review. Alzheimer's Research & Therapy 8:1.
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Sinead Whyte, Andrew Green, Marion McAllister & Hannah Shipman. (2016) Family Communication in Inherited Cardiovascular Conditions in Ireland. Journal of Genetic Counseling 25:6, pages 1317-1326.
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Denise M. Lautenbach, Kurt D. ChristensenJeffrey A. Sparks & Robert C. Green. (2013) Communicating Genetic Risk Information for Common Disorders in the Era of Genomic Medicine. Annual Review of Genomics and Human Genetics 14:1, pages 491-513.
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Eveline M. A. Bleiker, Mary Jane Esplen, Bettina Meiser, Helle Vendel Petersen & Andrea Farkas Patenaude. (2013) 100 years lynch syndrome: what have we learned about psychosocial issues?. Familial Cancer 12:2, pages 325-339.
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Robert C. Green, Heidi L. Rehm & Isaac S. Kohane. 2013. Genomic and Personalized Medicine. Genomic and Personalized Medicine 102 122 .
Belinda RahmanBettina MeiserPerminder SachdevKristine Barlow-StewartMargaret OtlowskiElvira ZilliacusPeter Schofield. (2012) To Know or Not to Know: An Update of the Literature on the Psychological and Behavioral Impact of Genetic Testing for Alzheimer Disease Risk. Genetic Testing and Molecular Biomarkers 16:8, pages 935-942.
Crossref
Kimberly A. Kaphingst, Melody Goodman, Chintan Pandya, Priyanka Garg, Jewel Stafford & Christina Lachance. (2012) Factors affecting frequency of communication about family health history with family members and doctors in a medically underserved population. Patient Education and Counseling 88:2, pages 291-297.
Crossref
M. Arribas-Ayllon. (2011) The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm?. British Medical Bulletin 100:1, pages 7-21.
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Paulo Caramelli, Antonio Lúcio Teixeira, Carlos Alberto Buchpiguel, Hae Won Lee, José Antônio Livramento, Liana Lisboa Fernandez & Renato Anghinah. (2011) Diagnosis of Alzheimer's disease in Brazil: Supplementary exams. Dementia & Neuropsychologia 5:3, pages 167-177.
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J. Scott Roberts, David I. Shalowitz, Kurt D. Christensen, Jessica N. Everett, Scott Y. H. Kim, Leon Raskin & Stephen B. Gruber. (2010) Returning Individual Research Results: Development of a Cancer Genetics Education and Risk Communication Protocol. Journal of Empirical Research on Human Research Ethics 5:3, pages 17-30.
Crossref
J Scott Roberts & Sarah M Tersegno. (2010) Estimating and disclosing the risk of developing Alzheimer’s disease: challenges, controversies and future directions. Future Neurology 5:4, pages 501-517.
Crossref
Laura M. Koehly & Colleen M. Mcbride. 2010. Handbook of Genomics and the Family. Handbook of Genomics and the Family 407 433 .

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