BACKGROUND. Advances in molecular genetics have led to the development of tests that can predict the risk of inheriting the genes for several adult-onset diseases. However, the psychological consequences of such testing are not well understood. METHODS. The 135 participants in the Canadian program of genetic testing to predict the risk of Huntington's disease were followed prospectively in three groups according to their test results: the increased-risk group (37 participants), the decreased-risk group (58 participants), and the group with no change in risk (the no-change group) (40 participants). All the participants received counseling before and after testing. Standard measures of psychological distress (the General Severity Index of the Symptom Check List 90-R), depression (the Beck Depression Inventory), and well-being (the General Well-Being Scale) were administered before genetic testing and again at intervals of 7 to 10 days, 6 months, and 12 months after the participants received their test results. RESULTS. At each follow-up assessment, the decreased-risk group had lower scores for distress than before testing (P < 0.001). The increased-risk group showed no significant change from base line on any follow-up measure, but over the year of study there were small linear declines (P < 0.023) for distress and depression. The no-change group had scores lower than at base line on the index of general well-being at each follow-up (P < or = 0.045). At the 12-month follow-up, both the increased-risk group and the decreased-risk group had lower scores for depression and higher scores for well-being than the no-change group (P < or = 0.049). CONCLUSIONS. Predictive testing for Huntington's disease has potential benefits for the psychological health of persons who receive results that indicate either an increase or a decrease in the risk of inheriting the gene for the disease.
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Department of Health Care and Epidemiology, University of British Columbia, Vancouver, Canada.
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Bombard, Y., Veenstra, G., Friedman, J. M, Creighton, S., Currie, L., Paulsen, J. S, Bottorff, J. L, Hayden, M. R, the Canadian Respond-HD Collaborative Research Gro,
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(2006). Why tell asymptomatic children of the risk of an adult-onset disease in the family but not test them for it?. J. Med. Ethics
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[Abstract][Full Text]
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(2005). Research and Practice Opportunities at the Intersection of Health Education, Health Behavior, and Genomics. Health Educ Behav
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(2005). Emotional reactions to predictive testing in Alzheimer's disease and other inherited dementias. AM J ALZHEIMERS DIS OTHER DEMEN
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Timman, R, Stijnen, T, Tibben, A
(2004). Methodology in longitudinal studies on psychological effects of predictive DNA testing: a review. J. Med. Genet.
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[Abstract][Full Text]
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(2004). Fertility Intentions Following Testing for a BRCA1 Gene Mutation. Cancer Epidemiol. Biomarkers Prev.
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[Abstract][Full Text]
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(2004). Current Research Promises and Challenges in Behavioral Oncology: Report from the American Society of Preventive Oncology Annual Meeting, 2002. Cancer Epidemiol. Biomarkers Prev.
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[Abstract][Full Text]
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(2003). "Genetic Exceptionalism" in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests. ANN INTERN MED
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[Abstract][Full Text]
Cutler, S. J., Hodgson, L. G.
(2003). To test or not to test: Interest in genetic testing for Alzheimer's disease among middle-aged adults. AM J ALZHEIMERS DIS OTHER DEMEN
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[Abstract]
Witjes-Ane, M-N W, Zwinderman, A H, Tibben, A, van Ommen, G-J B, Roos, R A C
(2002). Behavioural complaints in participants who underwent predictive testing for Huntington's disease. J. Med. Genet.
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[Full Text]
Elger, B S, Harding, T W
(2002). Should cancer patients be informed about their diagnosis and prognosis? Future doctors and lawyers differ. J. Med. Ethics
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[Abstract][Full Text]
Rosen, A., Wallenstein, S., McGovern, M. M.
(2002). Attitudes of Pediatric Residents Toward Ethical Issues Associated With Genetic Testing in Children. Pediatrics
110: 360-363
[Abstract][Full Text]
Twomey, J. G.
(2002). Considerations for Policies Regarding Genetic Testing of Children. Policy Politics Nursing Practice
3: 140-148
[Abstract]
Senior, V., Smith, J. A., Michie, S., Marteau, T. M.
(2002). Making Sense of Risk: An Interpretative Phenomenological Analysis of Vulnerability to Heart Disease. J Health Psychol
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[Abstract]
Foster, N. L.
(2001). Barriers to Treatment: The Unique Challenges for Physicians Providing Dementia Care. J Geriatr Psychiatry Neurol
14: 188-198
[Abstract]
Duisterhof, M., Trijsburg, R. W, Niermeijer, M. F, Roos, R. A C, Tibben, A.
(2001). Psychological studies in Huntington's disease: making up the balance. J. Med. Genet.
38: 852-861
[Full Text]
Lyon, E., Frank, E. L.
(2001). Hereditary Hemochromatosis Since Discovery of the HFE Gene. Clin. Chem.
47: 1147-1156
[Abstract][Full Text]
Prospero, L., Seminsky, M., Honeyford, J., Doan, B., Franssen, E., Meschino, W., Chart, P., Warner, E.
(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. CMAJ
164: 1005-1009
[Abstract][Full Text]
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(2001). New problems in testing for Huntington's disease: the issue of intermediate and reduced penetrance alleles. J. Med. Genet.
38: 12e-12
[Full Text]
Meiser, B., Dunn, S.
(2000). Psychological impact of genetic testing for Huntington's disease: an update of the literature. J. Neurol. Neurosurg. Psychiatry
69: 574-578
[Abstract][Full Text]
Maat-Kievit, A, Vlis, M V.-v. d., Zoeteweij, M, Losekoot, M, van Haeringen, A, Roos, R
(2000). Paradox of a better test for Huntington's disease. J. Neurol. Neurosurg. Psychiatry
69: 579-583
[Abstract][Full Text]
Cummings, S.
(2000). The Genetic Testing Process: How Much Counseling Is Needed?. JCO
18: 60s-64
[Full Text]
Dorval, M., Patenaude, A. F., Schneider, K. A., Kieffer, S. A., DiGianni, L., Kalkbrenner, K. J., Bromberg, J. I., Basili, L. A., Calzone, K., Stopfer, J., Weber, B. L., Garber, J. E.
(2000). Anticipated Versus Actual Emotional Reactions to Disclosure of Results of Genetic Tests for Cancer Susceptibility: Findings From p53 and BRCA1 Testing Programs. JCO
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[Abstract][Full Text]
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(2000). Testing Adolescents for a Hereditary Breast Cancer Gene (BRCA1): Respecting Their Autonomy Is in Their Best Interest. Arch Pediatr Adolesc Med
154: 113-119
[Abstract][Full Text]
Reeve, J., Owens, R. G., Winship, I. M.
(2000). Psychological Impact of Predictive Testing for Colonic Cancer. J Health Psychol
5: 99-108
[Abstract]
Decruyenaere, M., Evers-Kiebooms, G., Boogaerts, A., Cassiman, J. J., Cloostermans, T., Demyttenaere, K., Dom, R., Fryns, J. P.
(1999). Psychological functioning before predictive testing for Huntington's disease: the role of the parental disease, risk perception, and subjective proximity of the disease. J. Med. Genet.
36: 897-905
[Abstract][Full Text]
Hodgson, L. G., Cutler, S. J., Livingston, K.
(1999). Alzheimer's disease and symptom-seeking. AM J ALZHEIMERS DIS OTHER DEMEN
14: 364-374
[Abstract]
Stalmeier, P. F.M., Unic, I. J., Verhoef, L. C.G., Van Daal, W. A.J.
(1999). Evaluation of a Shared Decision Making Program for Women Suspected to Have a Genetic Predisposition to Breast Cancer: Preliminary Results. Med Decis Making
19: 230-241
[Abstract]
Dickenson, D. L, Geller, G.
(1999). Can children and young people consent to be tested for adult onset genetic disorders? • Commentary: Weighing burdens and benefits rather than competence. BMJ
318: 1063-1066
[Full Text]
Smith, K. R., West, J. A., Croyle, R. T., Botkin, J. R.
(1999). Familial Context of Genetic Testing for Cancer Susceptibility: Moderating Effect of Siblings' Test Results on Psychological Distress One to Two Weeks after BRCA1 Mutation Testing. Cancer Epidemiol. Biomarkers Prev.
8: 385-392
[Abstract][Full Text]
Croyle, R. T., Lerman, C.
(1999). Risk Communication in Genetic Testing for Cancer Susceptibility. J Natl Cancer Inst Monogr
1999: 59-66
[Abstract][Full Text]
Jones, V. A.
(1998). In the Same Boat. JAMA
280: 1537-1538
[Full Text]
ANPA Committee on Research, A R. o. t., Lauterbach, E. C., Cummings, J. L., Duffy, J., Coffey, C. E., Kaufer, D., Lovell, M., Malloy, P., Reeve, A., Royall, D. R., Rummans, T. A., Salloway, S. P.
(1998). Neuropsychiatric Correlates and Treatment of Lenticulostriatal Diseases: A Review of the Literature and Overview of Research Opportunities in Huntington's, Wilson's, and Fahr's Diseases. J. Neuropsychiatry Clin. Neurosi.
10: 249-266
[Abstract][Full Text]
Tracy, K. B.
(1997). Genetic Testing for Alzheimer Disease. JAMA
278: 978-979
[Abstract]
Geller, G., Botkin, J. R., Green, M. J., Press, N., Biesecker, B. B., Wilfond, B., Grana, G., Daly, M. B., Schneider, K., Kahn, M. J. E.
(1997). Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent. JAMA
277: 1467-1474
[Abstract]
Post, S. G., Whitehouse, P. J., Binstock, R. H., Bird, T. D., Eckert, S. K., Farrer, L. A., Fleck, L. M., Gaines, A. D., Juengst, E. T., Karlinsky, H., Miles, S., Murray, T. H., Quaid, K. A., Relkin, N. R., Roses, A. D., George-Hyslop, P. H., Sachs, G. A., Steinbock, B., Truschke, E. F., Zinn, A. B.
(1997). The Clinical Introduction of Genetic Testing for Alzheimer Disease: An Ethical Perspective. JAMA
277: 832-836
[Abstract]
Andersen, L. K., Jensen, H. K., Juul, S., Faergeman, O.
(1997). Patients' Attitudes Toward Detection of Heterozygous Familial Hypercholesterolemia. Arch Intern Med
157: 553-560
[Abstract]
Lerman, C., Schulman, K., Narod, S., Lynch, H.
(1996). Genetic Testing of Families With Hereditary Diseases-Reply. JAMA
276: 1140-1140
[Abstract]
Wexler, A.
(1996). Genetic Testing of Families With Hereditary Diseases. JAMA
276: 1139-1140
[Abstract]
Lerman, C., Narod, S., Schulman, K., Hughes, C., Gomez-Caminero, A., Bonney, G., Gold, K., Trock, B., Main, D., Lynch, J., Fulmore, C., Snyder, C., Lemon, S. J., Theresa, , Tonin, P., Lenoir, G., Lynch, H.
(1996). BRCA1 Testing in Families With Hereditary Breast-Ovarian Cancer: A Prospective Study of Patient Decision Making and Outcomes. JAMA
275: 1885-1892
[Abstract]
Hoffmann, D. E., Wulfsberg, E. A.
(1995). Testing Children for Genetic Predispositions: Is it in Their Best Interest?. J Law Med Ethics
23: 331-344
Rosenberg, R. N., Iannaccone, S. T.
(1995). The Prevention of Neurogenetic Disease. Arch Neurol
52: 356-362
[Abstract]
Wertz, D. C., Fanos, J. H., Reilly, P. R.
(1994). Genetic Testing for Children and Adolescents: Who Decides?. JAMA
272: 875-881
[Abstract]
Fifer, S. K., Mathias, S. D., Patrick, D. L., Mazonson, P. D., Lubeck, D. P., Buesching, D. P.
(1994). Untreated Anxiety Among Adult Primary Care Patients in a Health Maintenance Organization. Arch Gen Psychiatry
51: 740-750
[Abstract]
Kremer, B., Goldberg, P., Andrew, S. E., Theilmann, J., Telenius, H., Zeisler, J., Squitieri, F., Lin, B., Bassett, A., Almqvist, E., Bird, T. D., Hayden, M. R.
(1994). A Worldwide Study of the Huntington's Disease Mutation: The Sensitivity and Specificity of Measuring CAG Repeats. NEJM
330: 1401-1406
[Abstract][Full Text]
Mushlin, A. I., Mooney, C., Grow, V., Phelps, C. E., Affiliated With the Rochester-Toronto MRI Study Gr,
(1994). The Value of Diagnostic Information to Patients With Suspected Multiple Sclerosis. Arch Neurol
51: 67-72
[Abstract]
Wilfond, B. S., Nolan, K.
(1993). National Policy Development for the Clinical Application of Genetic Diagnostic Technologies: Lessons From Cystic Fibrosis. JAMA
270: 2948-2954
[Abstract]
MacCollin, M., Mohney, T., Trofatter, J., Wertelecki, W., Ramesh, V., Gusella, J.
(1993). DNA Diagnosis of Neurofibromatosis 2: Altered Coding Sequence of the merlin Tumor Suppressor in an Extended Pedigree. JAMA
270: 2316-2320
[Abstract]
Doukas, D. J.
(1993). Primary Care and the Human Genome Project: Into the Breach. Arch Fam Med
2: 1179-1183
[Abstract]
Biesecker, B. B., Boehnke, M., Calzone, K., Markel, D. S., Garber, J. E., Collins, F. S., Weber, B. L.
(1993). Genetic Counseling for Families With Inherited Susceptibility to Breast and Ovarian Cancer. JAMA
269: 1970-1974
[Abstract]
Bird, T. D., Bennett, R. L., Lipe, H. P., Wiggins, S., Hayden, M. R.
(1993). The Consequences of Testing for Huntington's Disease. NEJM
328: 1046-1046
[Full Text]
