메뉴 건너뛰기




Volumn 8, Issue 1, 2016, Pages 1-17

Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review

Author keywords

Alzheimer's disease; Behavioral effects; Biomarkers; Clinical research; Disclosure; Ethics; Prevention studies; Psychological effects; Risk; Social effects

Indexed keywords

APOENZYME; BIOLOGICAL MARKER; APOLIPOPROTEIN E4;

EID: 84994496503     PISSN: None     EISSN: 17589193     Source Type: Journal    
DOI: 10.1186/s13195-016-0212-z     Document Type: Article
Times cited : (53)

References (55)
  • 2
    • 84865529158 scopus 로고    scopus 로고
    • Clinical and biomarker changes in dominantly inherited Alzheimer's disease
    • 1:CAS:528:DC%2BC38XhtlGktL7J
    • Bateman RJ, Xiong C, Benzinger TL, Fagan AM, Goate A, Fox NC, et al. Clinical and biomarker changes in dominantly inherited Alzheimer's disease. N Engl J Med. 2012;367:795-804.
    • (2012) N Engl J Med , vol.367 , pp. 795-804
    • Bateman, R.J.1    Xiong, C.2    Benzinger, T.L.3    Fagan, A.M.4    Goate, A.5    Fox, N.C.6
  • 3
    • 84875250937 scopus 로고    scopus 로고
    • Amyloid beta deposition, neurodegeneration, and cognitive decline in sporadic Alzheimer's disease: a prospective cohort study
    • 1:CAS:528:DC%2BC3sXksFejsrw%3D
    • Villemagne VL, Burnham S, Bourgeat P, Brown B, Ellis KA, Salvado O, et al. Amyloid beta deposition, neurodegeneration, and cognitive decline in sporadic Alzheimer's disease: a prospective cohort study. Lancet Neurol. 2013;12:357-67.
    • (2013) Lancet Neurol , vol.12 , pp. 357-367
    • Villemagne, V.L.1    Burnham, S.2    Bourgeat, P.3    Brown, B.4    Ellis, K.A.5    Salvado, O.6
  • 4
    • 79956098248 scopus 로고    scopus 로고
    • Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease
    • Sperling RA, Aisen PS, Beckett LA, Bennett DA, Craft S, Fagan AM, et al. Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7:280-92.
    • (2011) Alzheimers Dement , vol.7 , pp. 280-292
    • Sperling, R.A.1    Aisen, P.S.2    Beckett, L.A.3    Bennett, D.A.4    Craft, S.5    Fagan, A.M.6
  • 6
    • 84957440529 scopus 로고    scopus 로고
    • Development of interventions for the secondary prevention of Alzheimer's dementia: the European Prevention of Alzheimer's Dementia (EPAD) project
    • Ritchie CW, Molinuevo JL, Truyen L, Satlin A, Van der Geyten S, Lovestone S, et al. Development of interventions for the secondary prevention of Alzheimer's dementia: the European Prevention of Alzheimer's Dementia (EPAD) project. Lancet Psychiatry. 2016;3:179-86.
    • (2016) Lancet Psychiatry , vol.3 , pp. 179-186
    • Ritchie, C.W.1    Molinuevo, J.L.2    Truyen, L.3    Satlin, A.4    Van der Geyten, S.5    Lovestone, S.6
  • 7
    • 72049130805 scopus 로고    scopus 로고
    • Hypothetical model of dynamic biomarkers of the Alzheimer's pathological cascade
    • 1:CAS:528:DC%2BC3cXhtFeru74%3D
    • Jack CR, Knopman DS, Jagust WJ, Shaw LM, Aisen PS, Weiner MW, et al. Hypothetical model of dynamic biomarkers of the Alzheimer's pathological cascade. Lancet Neurol. 2010;9:119-28.
    • (2010) Lancet Neurol , vol.9 , pp. 119-128
    • Jack, C.R.1    Knopman, D.S.2    Jagust, W.J.3    Shaw, L.M.4    Aisen, P.S.5    Weiner, M.W.6
  • 8
    • 77954033257 scopus 로고    scopus 로고
    • Amyloid imaging results from the Australian Imaging, Biomarkers and Lifestyle (AIBL) study of aging
    • Rowe CC, Ellis KA, Rimajova M, Bourgeat P, Pike KE, Jones G, et al. Amyloid imaging results from the Australian Imaging, Biomarkers and Lifestyle (AIBL) study of aging. Neurobiol Aging. 2010;31:1275-83.
    • (2010) Neurobiol Aging , vol.31 , pp. 1275-1283
    • Rowe, C.C.1    Ellis, K.A.2    Rimajova, M.3    Bourgeat, P.4    Pike, K.E.5    Jones, G.6
  • 9
    • 3442877311 scopus 로고    scopus 로고
    • Estimating risk curves for first-degree relatives of patients with Alzheimer's disease: the REVEAL study
    • Cupples LA, Farrer LA, Sadovnick AD, Relkin N, Whitehouse P, Green RC. Estimating risk curves for first-degree relatives of patients with Alzheimer's disease: the REVEAL study. Genet Med. 2004;6:192-6.
    • (2004) Genet Med , vol.6 , pp. 192-196
    • Cupples, L.A.1    Farrer, L.A.2    Sadovnick, A.D.3    Relkin, N.4    Whitehouse, P.5    Green, R.C.6
  • 10
    • 84994480654 scopus 로고    scopus 로고
    • Alzheimer Europe. Accessed 24 Apr 2016.
    • Alzheimer Europe. http://www.alzheimer-europe.org/Research/Value-of-Knowing/Public-concerns-about-Alzheimer-s-disease. Accessed 24 Apr 2016.
  • 11
    • 0033851665 scopus 로고    scopus 로고
    • Illness representations among first-degree relatives of people with Alzheimer disease
    • 1:STN:280:DC%2BD3cvksVaktw%3D%3D
    • Roberts JS, Connell CM. Illness representations among first-degree relatives of people with Alzheimer disease. Alzheimer Dis Assoc Disord. 2000;14:129-36.
    • (2000) Alzheimer Dis Assoc Disord , vol.14 , pp. 129-136
    • Roberts, J.S.1    Connell, C.M.2
  • 12
    • 73549092137 scopus 로고    scopus 로고
    • Pittsburgh compound B imaging and prediction of progression from cognitive normality to symptomatic Alzheimer disease
    • Morris JC, Roe CM, Grant EA, Head D, Storandt M, Goate AM, et al. Pittsburgh compound B imaging and prediction of progression from cognitive normality to symptomatic Alzheimer disease. Arch Neurol. 2009;66:1469-75.
    • (2009) Arch Neurol , vol.66 , pp. 1469-1475
    • Morris, J.C.1    Roe, C.M.2    Grant, E.A.3    Head, D.4    Storandt, M.5    Goate, A.M.6
  • 13
    • 0030823158 scopus 로고    scopus 로고
    • 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
    • 1:STN:280:DyaK1c%2FgtFKgsA%3D%3D
    • Farrer LA, Cupples LA, Haines JL, Hyman B, Kukull WA, Mayeux R, et al. 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. JAMA. 1997;278:1349-56.
    • (1997) JAMA , vol.278 , pp. 1349-1356
    • Farrer, L.A.1    Cupples, L.A.2    Haines, J.L.3    Hyman, B.4    Kukull, W.A.5    Mayeux, R.6
  • 14
    • 84885601280 scopus 로고    scopus 로고
    • Should we disclose amyloid imaging results to cognitively normal individuals?
    • Grill JD, Johnson DK, Burns JM. Should we disclose amyloid imaging results to cognitively normal individuals? Neurodegener Dis Manag. 2013;3:43-51.
    • (2013) Neurodegener Dis Manag , vol.3 , pp. 43-51
    • Grill, J.D.1    Johnson, D.K.2    Burns, J.M.3
  • 16
    • 84876258710 scopus 로고    scopus 로고
    • In vivo assessment of amyloid-beta deposition in nondemented very elderly subjects
    • 1:CAS:528:DC%2BC3sXhtFCks7rN
    • Mathis CA, Kuller LH, Klunk WE, Snitz BE, Price JC, Weissfeld LA, et al. In vivo assessment of amyloid-beta deposition in nondemented very elderly subjects. Ann Neurol. 2013;73:751-61.
    • (2013) Ann Neurol , vol.73 , pp. 751-761
    • Mathis, C.A.1    Kuller, L.H.2    Klunk, W.E.3    Snitz, B.E.4    Price, J.C.5    Weissfeld, L.A.6
  • 17
    • 38149036642 scopus 로고    scopus 로고
    • A systematic review of perceived risks, psychological and behavioral impacts of genetic testing
    • Heshka JT, Palleschi C, Howley H, Wilson B, Wells PS. A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genet Med. 2008;10:19-32.
    • (2008) Genet Med , vol.10 , pp. 19-32
    • Heshka, J.T.1    Palleschi, C.2    Howley, H.3    Wilson, B.4    Wells, P.S.5
  • 18
    • 84865683741 scopus 로고    scopus 로고
    • To know or not to know: an update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk
    • Rahman B, Meiser B, Sachdev P, Barlow-Stewart K, Otlowski M, Zilliacus E, et al. To know or not to know: an update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk. Genet Test Mol Biomarkers. 2012;16:935-42.
    • (2012) Genet Test Mol Biomarkers , vol.16 , pp. 935-942
    • Rahman, B.1    Meiser, B.2    Sachdev, P.3    Barlow-Stewart, K.4    Otlowski, M.5    Zilliacus, E.6
  • 19
    • 68049122102 scopus 로고    scopus 로고
    • Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement
    • Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6:e1000097.
    • (2009) PLoS Med , vol.6 , pp. e1000097
    • Moher, D.1    Liberati, A.2    Tetzlaff, J.3    Altman, D.G.4    Group, P.5
  • 20
    • 84859001212 scopus 로고    scopus 로고
    • The Cochrane Collaboration's tool for assessing risk of bias in randomised trials
    • Higgins JP, Altman DG, Gotzsche PC, Jüni P, Moher D, Oxman AD, et al. The Cochrane Collaboration's tool for assessing risk of bias in randomised trials. BMJ. 2011;343:d5928.
    • (2011) BMJ , vol.343 , pp. d5928
    • Higgins, J.P.1    Altman, D.G.2    Gotzsche, P.C.3    Jüni, P.4    Moher, D.5    Oxman, A.D.6
  • 21
    • 84994529215 scopus 로고    scopus 로고
    • Critical Appraisal Skills Programme (CASP) Accessed 27 Jan 2016.
    • Critical Appraisal Skills Programme (CASP). http://www.casp-uk.net/checklists. Accessed 27 Jan 2016.
  • 25
    • 33751111175 scopus 로고    scopus 로고
    • Genetic susceptibility testing for Alzheimer disease: motivation to obtain information and control as precursors to coping with increased risk
    • Gooding HC, Linnenbringer EL, Burack J, Roberts JS, Green RC, Biesecker BB. Genetic susceptibility testing for Alzheimer disease: motivation to obtain information and control as precursors to coping with increased risk. Patient Educ Couns. 2006;64:259-67.
    • (2006) Patient Educ Couns , vol.64 , pp. 259-267
    • Gooding, H.C.1    Linnenbringer, E.L.2    Burack, J.3    Roberts, J.S.4    Green, R.C.5    Biesecker, B.B.6
  • 26
    • 79958739282 scopus 로고    scopus 로고
    • Postgenomics, uncertain futures, and the familiarization of susceptibility genes
    • Chilibeck G, Lock M, Sehdev M. Postgenomics, uncertain futures, and the familiarization of susceptibility genes. Soc Sci Med. 2011;72:1768-75.
    • (2011) Soc Sci Med , vol.72 , pp. 1768-1775
    • Chilibeck, G.1    Lock, M.2    Sehdev, M.3
  • 31
    • 78549282384 scopus 로고    scopus 로고
    • The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL study
    • Ashida S, Koehly LM, Roberts JS, Chen CA, Hiraki S, Green RC. The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL study. Eur J Hum Genet. 2010;18:1296-301.
    • (2010) Eur J Hum Genet , vol.18 , pp. 1296-1301
    • Ashida, S.1    Koehly, L.M.2    Roberts, J.S.3    Chen, C.A.4    Hiraki, S.5    Green, R.C.6
  • 32
    • 84893699852 scopus 로고    scopus 로고
    • Effect of knowledge of APOE genotype on subjective and objective memory performance in healthy older adults
    • Lineweaver TT, Bondi MW, Galasko D, Salmon DP. Effect of knowledge of APOE genotype on subjective and objective memory performance in healthy older adults. Am J Psychiatry. 2014;171:201-8.
    • (2014) Am J Psychiatry , vol.171 , pp. 201-208
    • Lineweaver, T.T.1    Bondi, M.W.2    Galasko, D.3    Salmon, D.P.4
  • 35
    • 73649090760 scopus 로고    scopus 로고
    • Disclosing the disclosure: factors associated with communicating the results of genetic susceptibility testing for Alzheimer's disease
    • Ashida S, Koehly LM, Roberts JS, Chen CA, Hiraki S, Green RC. Disclosing the disclosure: factors associated with communicating the results of genetic susceptibility testing for Alzheimer's disease. J Health Commun. 2009;14:768-84.
    • (2009) J Health Commun , vol.14 , pp. 768-784
    • Ashida, S.1    Koehly, L.M.2    Roberts, J.S.3    Chen, C.A.4    Hiraki, S.5    Green, R.C.6
  • 36
    • 83255174033 scopus 로고    scopus 로고
    • The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm?
    • Arribas-Ayllon M. The ethics of disclosing genetic diagnosis for Alzheimer's disease: do we need a new paradigm? Br Med Bull. 2011;100:7-21.
    • (2011) Br Med Bull , vol.100 , pp. 7-21
    • Arribas-Ayllon, M.1
  • 37
    • 19944429583 scopus 로고    scopus 로고
    • Genetic susceptibility testing versus family history-based risk assessment: Impact on perceived risk of Alzheimer disease
    • LaRusse S, Roberts JS, Marteau TM, Katzen H. Genetic susceptibility testing versus family history-based risk assessment: Impact on perceived risk of Alzheimer disease. Genet Med. 2005;7:48-53.
    • (2005) Genet Med , vol.7 , pp. 48-53
    • LaRusse, S.1    Roberts, J.S.2    Marteau, T.M.3    Katzen, H.4
  • 38
    • 18644365218 scopus 로고    scopus 로고
    • Predictive genetic testing for Alzheimer's diseases: Impact upon risk perception
    • Marteau TM, Roberts S, LaRusse S, Green RC. Predictive genetic testing for Alzheimer's diseases: Impact upon risk perception. Risk Anal. 2005;25:397-404.
    • (2005) Risk Anal , vol.25 , pp. 397-404
    • Marteau, T.M.1    Roberts, S.2    LaRusse, S.3    Green, R.C.4
  • 39
    • 84859486530 scopus 로고    scopus 로고
    • To tell the truth, the whole truth, may do patients harm: the problem of the nocebo effect for informed consent
    • Wells RE, Kaptchuk TJ. To tell the truth, the whole truth, may do patients harm: the problem of the nocebo effect for informed consent. Am J Bioeth. 2012;12:22-9.
    • (2012) Am J Bioeth , vol.12 , pp. 22-29
    • Wells, R.E.1    Kaptchuk, T.J.2
  • 40
    • 84931958132 scopus 로고    scopus 로고
    • Nocebo and the potential harm of "high risk" labelling: a scoping review
    • Symon A, Williams B, Adelasoye QA, Cheyne H. Nocebo and the potential harm of "high risk" labelling: a scoping review. J Adv Nurs. 2015;71:1518-29.
    • (2015) J Adv Nurs , vol.71 , pp. 1518-1529
    • Symon, A.1    Williams, B.2    Adelasoye, Q.A.3    Cheyne, H.4
  • 41
    • 0037279620 scopus 로고    scopus 로고
    • To test or not to test: interest in genetic testing for Alzheimer's disease among middle-aged adults
    • Cutler SJ, Hodgson LG. To test or not to test: interest in genetic testing for Alzheimer's disease among middle-aged adults. Am J Alzheimers Dis Other Demen. 2003;18:9-20.
    • (2003) Am J Alzheimers Dis Other Demen , vol.18 , pp. 9-20
    • Cutler, S.J.1    Hodgson, L.G.2
  • 42
    • 0034106541 scopus 로고    scopus 로고
    • Anticipating response to predictive genetic testing for Alzheimer's disease: a survey of first-degree relatives
    • 1:STN:280:DC%2BD3c3htlyqtA%3D%3D
    • Roberts JS. Anticipating response to predictive genetic testing for Alzheimer's disease: a survey of first-degree relatives. Gerontologist. 2000;40:43-52.
    • (2000) Gerontologist , vol.40 , pp. 43-52
    • Roberts, J.S.1
  • 43
  • 44
    • 84895800589 scopus 로고    scopus 로고
    • Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet
    • Arias JJ, Karlawish J. Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet. Neurology. 2014;82:725-9.
    • (2014) Neurology , vol.82 , pp. 725-729
    • Arias, J.J.1    Karlawish, J.2
  • 45
    • 0037178579 scopus 로고    scopus 로고
    • Dietary intake of antioxidant nutrients and the risk of incident Alzheimer disease in a biracial community study
    • 1:CAS:528:DC%2BD38XkvVOjtr0%3D
    • Morris MC, Evans DA, Bienias JL, Tangney CC, Bennett DA, Aggarwal N, et al. Dietary intake of antioxidant nutrients and the risk of incident Alzheimer disease in a biracial community study. JAMA. 2002;287:3230-7.
    • (2002) JAMA , vol.287 , pp. 3230-3237
    • Morris, M.C.1    Evans, D.A.2    Bienias, J.L.3    Tangney, C.C.4    Bennett, D.A.5    Aggarwal, N.6
  • 46
    • 67650921433 scopus 로고    scopus 로고
    • Vitamin E paradox in Alzheimer's disease: it does not prevent loss of cognition and may even be detrimental
    • 1:CAS:528:DC%2BD1MXmsFKgurc%3D
    • Lloret A, Badia MC, Mora NJ, Pallardo FV, Alonso MD, Vina J. Vitamin E paradox in Alzheimer's disease: it does not prevent loss of cognition and may even be detrimental. J Alzheimers Dis. 2009;17:143-9.
    • (2009) J Alzheimers Dis , vol.17 , pp. 143-149
    • Lloret, A.1    Badia, M.C.2    Mora, N.J.3    Pallardo, F.V.4    Alonso, M.D.5    Vina, J.6
  • 48
    • 84929158822 scopus 로고    scopus 로고
    • Amyloid imaging, risk disclosure and Alzheimer's disease: ethical and practical issues
    • Roberts JS, Dunn LB, Rabinovici GD. Amyloid imaging, risk disclosure and Alzheimer's disease: ethical and practical issues. Neurodegener Dis Manag. 2013;3:219-29.
    • (2013) Neurodegener Dis Manag , vol.3 , pp. 219-229
    • Roberts, J.S.1    Dunn, L.B.2    Rabinovici, G.D.3
  • 50
    • 77951448530 scopus 로고    scopus 로고
    • "I know what you told me, but this is what I think:" perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate
    • Linnenbringer E, Roberts JS, Hiraki S, Cupples LA, Green RC. "I know what you told me, but this is what I think:" perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate. Genet Med. 2010;12:219-27.
    • (2010) Genet Med , vol.12 , pp. 219-227
    • Linnenbringer, E.1    Roberts, J.S.2    Hiraki, S.3    Cupples, L.A.4    Green, R.C.5
  • 51
    • 78650364502 scopus 로고    scopus 로고
    • Patients-in-waiting: Living between sickness and health in the genomics era
    • Timmermans S, Buchbinder M. Patients-in-waiting: Living between sickness and health in the genomics era. J Health Soc Behav. 2010;51:408-23.
    • (2010) J Health Soc Behav , vol.51 , pp. 408-423
    • Timmermans, S.1    Buchbinder, M.2
  • 52
    • 84884641874 scopus 로고    scopus 로고
    • Would you want to know? Public attitudes on early diagnostic testing for Alzheimer's disease
    • Wikler EM, Blendon RJ, Benson JM. Would you want to know? Public attitudes on early diagnostic testing for Alzheimer's disease. Alzheimers Res Ther. 2013;5:43.
    • (2013) Alzheimers Res Ther , vol.5 , pp. 43
    • Wikler, E.M.1    Blendon, R.J.2    Benson, J.M.3
  • 53
    • 50649102828 scopus 로고    scopus 로고
    • Explaining behavior change after genetic testing: the problem of collinearity between test results and risk estimates
    • Fanshawe TR, Prevost AT, Roberts JS, Green RC, Armstrong D, Marteau TM. Explaining behavior change after genetic testing: the problem of collinearity between test results and risk estimates. Genet Test. 2008;12:381-6.
    • (2008) Genet Test , vol.12 , pp. 381-386
    • Fanshawe, T.R.1    Prevost, A.T.2    Roberts, J.S.3    Green, R.C.4    Armstrong, D.5    Marteau, T.M.6
  • 54
    • 55549102328 scopus 로고    scopus 로고
    • Comparing test-specific distress of susceptibility versus deterministic genetic testing for Alzheimer's disease
    • Cassidy MR, Roberts JS, Bird TD, Steinbart EJ, Cupples LA, Chen CA, et al. Comparing test-specific distress of susceptibility versus deterministic genetic testing for Alzheimer's disease. Alzheimers Dement. 2008;4:406-13.
    • (2008) Alzheimers Dement , vol.4 , pp. 406-413
    • Cassidy, M.R.1    Roberts, J.S.2    Bird, T.D.3    Steinbart, E.J.4    Cupples, L.A.5    Chen, C.A.6
  • 55
    • 28444468433 scopus 로고    scopus 로고
    • Genetic risk assessment for adult children of people with Alzheimer's disease: the Risk Evaluation and Education for Alzheimer's Disease (REVEAL) study
    • Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Green RC, Group RS. Genetic risk assessment for adult children of people with Alzheimer's disease: the Risk Evaluation and Education for Alzheimer's Disease (REVEAL) study. J Geriatr Psychiatry Neurol. 2005;18:250-55.
    • (2005) J Geriatr Psychiatry Neurol , vol.18 , pp. 250-255
    • Roberts, J.S.1    Cupples, L.A.2    Relkin, N.R.3    Whitehouse, P.J.4    Green, R.C.5    Group, R.S.6


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.