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Volumn 21, Issue 6, 2013, Pages 596-601

A tiered-layered-staged model for informed consent in personal genome testing

Author keywords

complex diseases; ethical issues; informed consent; personal genome testing

Indexed keywords

ARTICLE; CONSUMER; DISEASE ASSOCIATION; GENOME ANALYSIS; HUMAN; INFORMED CONSENT; MEDICAL ETHICS; MEDICAL INFORMATION; PRIORITY JOURNAL; ETHICS; GENETIC SCREENING; GENETICS; HUMAN GENOME; PERSONALIZED MEDICINE; THEORETICAL MODEL;

EID: 84884255195     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2012.237     Document Type: Article
Times cited : (90)

References (37)
  • 2
    • 78549241587 scopus 로고    scopus 로고
    • European Society of Human Genetics (ESHG): Statement of the ESHG on direct-Toconsumer genetic testing for health-related purposes
    • European Society of Human Genetics (ESHG): Statement of the ESHG on direct-Toconsumer genetic testing for health-related purposes. Eur J Hum Genet. 2010; 18: 1271-1273.
    • (2010) Eur J Hum Genet , vol.18 , pp. 1271-1273
  • 5
    • 84856535057 scopus 로고    scopus 로고
    • Pranati: Informed consent: Are we doing enough?
    • Pranati: Informed consent: are we doing enough?. Perspect Clin Res. 2010; 1: 124-127.
    • (2010) Perspect Clin Res , vol.1 , pp. 124-127
  • 8
    • 77950832782 scopus 로고    scopus 로고
    • Future health applications of genomics: Priorities for communication, behavioral, and social sciences research
    • McBride CM, Bowen D, Brody LC, et al. Future health applications of genomics: priorities for communication, behavioral, and social sciences research. Am J Prev Med. 2010; 38: 556-565.
    • (2010) Am J Prev Med , vol.38 , pp. 556-565
    • McBride, C.M.1    Bowen, D.2    Brody, L.C.3
  • 9
    • 70449719034 scopus 로고    scopus 로고
    • Social networkers' attitudes toward direct-To-consumer personal genome testing
    • McGuire AL, Diaz CM, Wang T, Hilsenbeck SG. Social networkers' attitudes toward direct-To-consumer personal genome testing. Am J Bioeth. 2009; 9: 3-10.
    • (2009) Am J Bioeth , vol.9 , pp. 3-10
    • McGuire, A.L.1    Diaz, C.M.2    Wang, T.3    Hilsenbeck, S.G.4
  • 10
    • 79851493086 scopus 로고    scopus 로고
    • Effect of direct-To-consumer genomewide profiling to assess disease risk
    • Bloss CS, Schork NJ, Topol EJ. Effect of direct-To-consumer genomewide profiling to assess disease risk. N Engl J Med. 2011; 364: 524-534.
    • (2011) N Engl J Med , vol.364 , pp. 524-534
    • Bloss, C.S.1    Schork, N.J.2    Topol, E.J.3
  • 11
    • 70449701756 scopus 로고    scopus 로고
    • Personal genome testing do you know what you are buying?
    • Howard HC, Borry P. Personal genome testing: do you know what you are buying?. Am J Bioeth. 2009; 9: 11-13.
    • (2009) Am J Bioeth , vol.9 , pp. 11-13
    • Howard, H.C.1    Borry, P.2
  • 12
    • 36549010091 scopus 로고    scopus 로고
    • The ethical challenges of direct-To-consumer genetic testing
    • Berg C, Fryer-Edwards K. The ethical challenges of direct-To-consumer genetic testing. J Bus Ethics. 2007; 77: 17-31.
    • (2007) J Bus Ethics , vol.77 , pp. 17-31
    • Berg, C.1    Fryer-Edwards, K.2
  • 13
    • 67649171897 scopus 로고    scopus 로고
    • Personal genomics services whose genomes?
    • Gurwitz D, Bregman-Eschet Y. Personal genomics services: whose genomes?. Eur J Hum Genet. 2009; 17: 883-889.
    • (2009) Eur J Hum Genet , vol.17 , pp. 883-889
    • Gurwitz, D.1    Bregman-Eschet, Y.2
  • 14
    • 85028235378 scopus 로고    scopus 로고
    • Nuffield Council on Bioethics: Medical Profiling and Online Medicine: The Ethics of in a Consumer Age. London, Nuffield Council on Bioethics 2010
    • Nuffield Council on Bioethics: Medical Profiling and Online Medicine: The Ethics of ''Personalised Healthcare'' in a Consumer Age. London, Nuffield Council on Bioethics 2010.
    • Personalised Healthcare
  • 16
    • 77952541090 scopus 로고    scopus 로고
    • Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers
    • Lachance CR, Erby LAH, Ford BM, Allen VC, Kaphingst KA. Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers. Genet Med. 2010; 12: 304-312.
    • (2010) Genet Med , vol.12 , pp. 304-312
    • Lachance, C.R.1    Erby, L.A.H.2    Ford, B.M.3    Allen, V.C.4    Kaphingst, K.A.5
  • 17
    • 84863631499 scopus 로고    scopus 로고
    • Informed choice in direct-To-consumer genetic testing (DTCGT) websites: A content analysis of benefits, risks, and limitations
    • Singleton A, Erby LH, Foisie KV, Kaphingst KA. Informed choice in direct-To-consumer genetic testing (DTCGT) websites: a content analysis of benefits, risks, and limitations. J Genet Couns. 2011; 21: 433-439.
    • (2011) J Genet Couns , vol.21 , pp. 433-439
    • Singleton, A.1    Erby, L.H.2    Foisie, K.V.3    Kaphingst, K.A.4
  • 19
    • 0028761242 scopus 로고
    • Generic consent for genetic screening
    • Elias S, Annas GJ. Generic consent for genetic screening. N Engl J Med. 1994; 330: 1611-1613.
    • (1994) N Engl J Med , vol.330 , pp. 1611-1613
    • Elias, S.1    Annas, G.J.2
  • 20
    • 0037329215 scopus 로고    scopus 로고
    • Some limits of informed consent
    • O'Neill O. Some limits of informed consent. J Med Ethics. 2003; 29: 4-7.
    • (2003) J Med Ethics , vol.29 , pp. 4-7
    • O'Neill, O.1
  • 23
    • 53649089071 scopus 로고    scopus 로고
    • Communicating about screening
    • Entwistle VA, Carter SM, Trevena L, et al. Communicating about screening. BMJ. 2008; 337: 789-791.
    • (2008) BMJ , vol.337 , pp. 789-791
    • Entwistle, V.A.1    Carter, S.M.2    Trevena, L.3
  • 25
    • 79951807036 scopus 로고    scopus 로고
    • Mandatory versus voluntary consent for newborn screening?
    • Ross LF. Mandatory versus voluntary consent for newborn screening?. Kennedy Inst Ethics J. 2010; 20: 299-328.
    • (2010) Kennedy Inst Ethics J. , vol.20 , pp. 299-328
    • Ross, L.F.1
  • 26
    • 79960834031 scopus 로고    scopus 로고
    • Feedback of individual genetic results to research participants: In favor of a qualified disclosure policy
    • Bredenoord AL, Onland-Moret NC, Van Delden JJM: Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy. Hum Mutat. 2011; 32: 861-867.
    • (2011) Hum Mutat , vol.32 , pp. 861-867
    • Bredenoord, A.L.1    Onland-Moret, N.C.2    Van Delden, J.J.M.3
  • 27
    • 79959276553 scopus 로고    scopus 로고
    • Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time
    • Berg JS, Khoury MJ, Evans JP. Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time. Genet Med. 2011; 13: 499-504.
    • (2011) Genet Med , vol.13 , pp. 499-504
    • Berg, J.S.1    Khoury, M.J.2    Evans, J.P.3
  • 28
    • 85028239740 scopus 로고    scopus 로고
    • James Evans' plan to make genetic testing data manageable for the clinic
    • Rizk C. James Evans' plan to make genetic testing data manageable for the clinic. Genomeweb 2011.
    • (2011) Genomeweb
    • Rizk, C.1
  • 29
    • 84855896799 scopus 로고    scopus 로고
    • The role of disease characteristics in the ethical debate on personal genome testing
    • Bunnik EM, Schermer MHN, Janssens ACJW: The role of disease characteristics in the ethical debate on personal genome testing. BMC Med Genomics. 2012; 5: 4.
    • (2012) BMC Med Genomics , vol.5 , pp. 4
    • Bunnik, E.M.1    Schermer, M.H.N.2    Janssens, A.C.J.W.3
  • 30
    • 2942552437 scopus 로고    scopus 로고
    • US Department of Health and Human Services (HHS Washington, DC, HHS
    • US Department of Health and Human Services (HHS): Research-Based Web Design &Usability Guidelines. Washington, DC, HHS 2006.
    • (2006) Research-Based Web Design &usability Guidelines
  • 33
    • 38449092769 scopus 로고    scopus 로고
    • Counterpoint: Genetic risk feedback for common disease: Time to test the waters
    • Thompson PA. Counterpoint: genetic risk feedback for common disease: time to test the waters. Cancer Epidemiol Biomarkers Prev. 2007; 16: 1727-1729.
    • (2007) Cancer Epidemiol Biomarkers Prev , vol.16 , pp. 1727-1729
    • Thompson, P.A.1
  • 34
    • 84856502646 scopus 로고    scopus 로고
    • Users' motivations to purchase direct-To-consumer genomewide testing: An exploratory study of personal stories
    • Su Y, Howard HC, Borry P. Users' motivations to purchase direct-To-consumer genomewide testing: an exploratory study of personal stories. J Community Genet. 2011; 2: 135-146.
    • (2011) J Community Genet , vol.2 , pp. 135-146
    • Su, Y.1    Howard, H.C.2    Borry, P.3
  • 37
    • 0036722841 scopus 로고    scopus 로고
    • An approach that integrates patient education and informed consent in breast augmentation
    • Tebbetts JB, Tebbetts TB. An approach that integrates patient education and informed consent in breast augmentation. Plast Reconstr Surg. 2002; 110: 971-978.
    • (2002) Plast Reconstr Surg , vol.110 , pp. 971-978
    • Tebbetts, J.B.1    Tebbetts, T.B.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.