메뉴 건너뛰기




Volumn 41, Issue 4, 2015, Pages 310-314

Direct-to-consumer genomics on the scales of autonomy

Author keywords

[No Author keywords available]

Indexed keywords

COMMERCIAL PHENOMENA; CONSUMER; ECONOMICS; ETHICS; FOOD AND DRUG ADMINISTRATION; GENETIC COUNSELING; GENETIC SCREENING; GENOMICS; HUMAN; LEGISLATION AND JURISPRUDENCE; MARKETING; PERSONAL AUTONOMY; POLICY; STANDARDS; TRENDS; UNITED STATES;

EID: 84925583982     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/medethics-2014-102026     Document Type: Article
Times cited : (49)

References (44)
  • 1
    • 84896699523 scopus 로고    scopus 로고
    • Warning letter to 23andMe, Inc.
    • 22 November 2013, (accessed 30 Dec 2013)
    • United States Food and Drug Administration. Warning letter to 23andMe, Inc. 22 November 2013. http://www.fda.gov/iceci/enforcementactions/warningletters/2013/ ucm376296.htm (accessed 30 Dec 2013)
  • 2
    • 84865099437 scopus 로고    scopus 로고
    • Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations
    • Skirton H, Goldsmith L, Jackson L, et al. Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations. Clin Genet 2012;82:210-18.
    • (2012) Clin Genet , vol.82 , pp. 210-218
    • Skirton, H.1    Goldsmith, L.2    Jackson, L.3
  • 4
    • 84884403202 scopus 로고    scopus 로고
    • In vitro Diagnostics
    • Letters to 23andMe and other companies, (accessed 30 Dec 2013)
    • US Food and Drug Administration. In vitro Diagnostics. Letters to 23andMe and other companies. http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ InVitroDiagnostics/default.htm (accessed 30 Dec 2013).
  • 5
    • 84855919506 scopus 로고    scopus 로고
    • Direct-to-consumer genetic testing: perceptions, problems, and policy responses
    • Caulfield T, McGuire AL. Direct-to-consumer genetic testing: perceptions, problems, and policy responses. Annu Rev Med 2012;63:23-33.
    • (2012) Annu Rev Med , vol.63 , pp. 23-33
    • Caulfield, T.1    McGuire, A.L.2
  • 6
    • 0003956640 scopus 로고
    • New York: Oxford University Press
    • Raz J. The morality of freedom. New York: Oxford University Press, 1986:369-99.
    • (1986) The morality of freedom , pp. 369-399
    • Raz, J.1
  • 7
    • 84905925219 scopus 로고    scopus 로고
    • Informed consent in direct-to-consumer personal genome testing: the outline of a model between specific and generic consent
    • Bunnik EM, Janssens AC, Schermer MH. Informed consent in direct-to-consumer personal genome testing: the outline of a model between specific and generic consent. Bioethics 2014;28:343-51.
    • (2014) Bioethics , vol.28 , pp. 343-351
    • Bunnik, E.M.1    Janssens, A.C.2    Schermer, M.H.3
  • 8
    • 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
  • 9
    • 77955055658 scopus 로고    scopus 로고
    • Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects
    • Howard HC, Knoppers BM, Borry P. Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects. EMBO Report 2010;11:579-82.
    • (2010) EMBO Report , vol.11 , pp. 579-582
    • Howard, H.C.1    Knoppers, B.M.2    Borry, P.3
  • 10
    • 84872776619 scopus 로고    scopus 로고
    • 23 and me, we, and you: direct-to-consumer genetics, intellectual property, and informed consent
    • Allyse M. 23 and me, we, and you: direct-to-consumer genetics, intellectual property, and informed consent. Trends Biotechnol 2013;31:68-9.
    • (2013) Trends Biotechnol , vol.31 , pp. 68-69
    • Allyse, M.1
  • 11
    • 84876026493 scopus 로고    scopus 로고
    • Nonpropositional content in direct-to-consumer genetic testing advertisements
    • Borry P, Shabani M, Howard HC. Nonpropositional content in direct-to-consumer genetic testing advertisements. Am J Bioeth 2013;13:14-6.
    • (2013) Am J Bioeth , vol.13 , pp. 14-16
    • Borry, P.1    Shabani, M.2    Howard, H.C.3
  • 12
    • 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, et al. Informed Choice in Direct-to-Consumer Genetic Testing (DTCGT) Websites: a Content Analysis of Benefits, Risks, and Limitations. J Genet Couns 2012;21:433-9.
    • (2012) J Genet Couns , vol.21 , pp. 433-439
    • Singleton, A.1    Erby, L.H.2    Foisie, K.V.3
  • 14
    • 84877287275 scopus 로고    scopus 로고
    • "Trust is not Something you Can Reclaim Easily": Patenting in the Field of Direct-to-Consumer Genetic Testing
    • Sterckx S, Cockbain J, Howard H, et al. "Trust is not Something you Can Reclaim Easily": Patenting in the Field of Direct-to-Consumer Genetic Testing. Genet Med 2013;15:382-7.
    • (2013) Genet Med , vol.15 , pp. 382-387
    • Sterckx, S.1    Cockbain, J.2    Howard, H.3
  • 15
    • 80053373293 scopus 로고    scopus 로고
    • Is informed consent broken?
    • Henderson GE. Is informed consent broken? Am J Med Sci 2011;342:267-72.
    • (2011) Am J Med Sci , vol.342 , pp. 267-272
    • Henderson, G.E.1
  • 16
    • 84862536361 scopus 로고    scopus 로고
    • Informed consent: a broken contract
    • Hayden E. Informed consent: a broken contract. Nature 2012;486:312-14.
    • (2012) Nature , vol.486 , pp. 312-314
    • Hayden, E.1
  • 17
    • 79954989981 scopus 로고    scopus 로고
    • Regulating direct-to-consumer genetic tests: what is all the fuss about?
    • Wright CF, Hall A, Zimmern RL. Regulating direct-to-consumer genetic tests: what is all the fuss about? Genet Med 2011;4:295-300.
    • (2011) Genet Med , vol.4 , pp. 295-300
    • Wright, C.F.1    Hall, A.2    Zimmern, R.L.3
  • 20
    • 82755190462 scopus 로고    scopus 로고
    • Direct-to-consumer genetic testing: reliable or risky?
    • Spencer DH, Lockwood C, Topol E, et al. Direct-to-consumer genetic testing: reliable or risky? Clin Chem 2011;57:1641-4.
    • (2011) Clin Chem , vol.57 , pp. 1641-1644
    • Spencer, D.H.1    Lockwood, C.2    Topol, E.3
  • 21
    • 84925622078 scopus 로고    scopus 로고
    • Testing BRCA1 positive: what happens next
    • (accessed 2 Jan 2014)
    • Steinberger J. Testing BRCA1 positive: what happens next. http://www. huffingtonpost.com/jill-steinberg/ (accessed 2 Jan 2014).
    • Steinberger, J.1
  • 22
    • 80052629056 scopus 로고    scopus 로고
    • Self diagnosis of Lynch syndrome using direct to consumer genetic testing: a case study
    • Roberts ME, Riegert-Johnson DL, Thomas BC. Self diagnosis of Lynch syndrome using direct to consumer genetic testing: a case study. J Genet Couns 2011;20:327-9.
    • (2011) J Genet Couns , vol.20 , pp. 327-329
    • Roberts, M.E.1    Riegert-Johnson, D.L.2    Thomas, B.C.3
  • 23
    • 84877111832 scopus 로고    scopus 로고
    • Dealing with the unexpected: consumer responses to direct-access BRCA mutation testing
    • Francke U, Dijamco C, Kiefer AK, et al. Dealing with the unexpected: consumer responses to direct-access BRCA mutation testing. Peer J 2013;1:e8.
    • (2013) Peer J , vol.1
    • Francke, U.1    Dijamco, C.2    Kiefer, A.K.3
  • 24
    • 84874605951 scopus 로고    scopus 로고
    • Beyond the clinic: 'direct-to-consumer' genomic profiling services and pharmacogenomics
    • Prainsack B, Vayena E. Beyond the clinic: 'direct-to-consumer' genomic profiling services and pharmacogenomics. Pharmacogenomics 2013;14:403-12.
    • (2013) Pharmacogenomics , vol.14 , pp. 403-412
    • Prainsack, B.1    Vayena, E.2
  • 26
    • 84878823104 scopus 로고    scopus 로고
    • Impact of direct-to-consumer genomic testing at long term follow-up
    • Bloss CS, Wineinger NE, Darst BF, et al. Impact of direct-to-consumer genomic testing at long term follow-up. J Med Genet 2013;50:393-400.
    • (2013) J Med Genet , vol.50 , pp. 393-400
    • Bloss, C.S.1    Wineinger, N.E.2    Darst, B.F.3
  • 27
    • 84883776586 scopus 로고    scopus 로고
    • Perceptions of genetic counseling services in direct-to-consumer personal genomic testing
    • Darst BF, Madlensky L, Schork NJ, et al. Perceptions of genetic counseling services in direct-to-consumer personal genomic testing. Clin Genet 2013;84:335-9.
    • (2013) Clin Genet , vol.84 , pp. 335-339
    • Darst, B.F.1    Madlensky, L.2    Schork, N.J.3
  • 28
    • 84893119664 scopus 로고    scopus 로고
    • Direct-to-consumer genomic testing offers little clinical utility but appears to cause minimal harm
    • Adams SD, Evans JP, Aylsworth AS. Direct-to-consumer genomic testing offers little clinical utility but appears to cause minimal harm. N C Med J 2013;74:494-8.
    • (2013) N C Med J , vol.74 , pp. 494-498
    • Adams, S.D.1    Evans, J.P.2    Aylsworth, A.S.3
  • 29
    • 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;364:524-34.
    • (2011) N Engl J Med , vol.364 , pp. 524-534
    • Bloss, C.S.1    Schork, N.J.2    Topol, E.J.3
  • 30
    • 84867198371 scopus 로고    scopus 로고
    • Association between health-service use and multiplex genetic testing
    • Reid RJ, McBride CM, Alford SH, et al. Association between health-service use and multiplex genetic testing. Genet Med 2012;14:852-9.
    • (2012) Genet Med , vol.14 , pp. 852-859
    • Reid, R.J.1    McBride, C.M.2    Alford, S.H.3
  • 31
    • 84883885365 scopus 로고    scopus 로고
    • Regulating genomics: time for a broader vision
    • Vayena E, Prainsack B. Regulating genomics: time for a broader vision. Sci Transl Med 2013;5:198ed12.
    • (2013) Sci Transl Med , vol.5
    • Vayena, E.1    Prainsack, B.2
  • 32
    • 11244266167 scopus 로고    scopus 로고
    • Are genetic self-tests dangerous? Assessing the commercialization of genetic testing in terms of personal autonomy
    • Beckman L. Are genetic self-tests dangerous? Assessing the commercialization of genetic testing in terms of personal autonomy. Theor Med Bioeth 2004;25:387-98.
    • (2004) Theor Med Bioeth , vol.25 , pp. 387-398
    • Beckman, L.1
  • 33
    • 18744427850 scopus 로고    scopus 로고
    • Decision aids for people facing health treatment or screening decisions
    • Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011;(10): CD001431.
    • (2011) Cochrane Database Syst Rev , Issue.10
    • Stacey, D.1    Bennett, C.L.2    Barry, M.J.3
  • 34
    • 84868686659 scopus 로고    scopus 로고
    • Experiences of early users of direct-to-consumer genomics in Switzerland: an exploratory study
    • Vayena E, Gourna E, Streuli J, et al. Experiences of early users of direct-to-consumer genomics in Switzerland: an exploratory study. Public Health Genomics 2012;15:352-62.
    • (2012) Public Health Genomics , vol.15 , pp. 352-362
    • Vayena, E.1    Gourna, E.2    Streuli, J.3
  • 35
    • 84904068648 scopus 로고    scopus 로고
    • Playing a part in research? University students attitudes to direct-to-consumer genomics
    • Vayena E, Ineichen C, Stupka E, et al. Playing a part in research? University students attitudes to direct-to-consumer genomics. Public Health Genomics 2014;17:158-68.
    • (2014) Public Health Genomics , vol.17 , pp. 158-168
    • Vayena, E.1    Ineichen, C.2    Stupka, E.3
  • 36
    • 84875049874 scopus 로고    scopus 로고
    • Personal genome testing in medical education: student experiences with genotyping in the classroom
    • Vernez SL, Salari K, Ormond KE, et al. Personal genome testing in medical education: student experiences with genotyping in the classroom. Genome Med 2013;5:24-6.
    • (2013) Genome Med , vol.5 , pp. 24-26
    • Vernez, S.L.1    Salari, K.2    Ormond, K.E.3
  • 38
    • 69549083158 scopus 로고    scopus 로고
    • Evaluating the utility of personal genomic information
    • Foster MW, Mulvihill JJ, Sharp RR. Evaluating the utility of personal genomic information. Genet Med 2009;11:570-4.
    • (2009) Genet Med , vol.11 , pp. 570-574
    • Foster, M.W.1    Mulvihill, J.J.2    Sharp, R.R.3
  • 39
    • 33750735014 scopus 로고    scopus 로고
    • Genetics, biosocial groups and the future of identity
    • Hacking I. Genetics, biosocial groups and the future of identity. Daedalus 2006;135:81-95.
    • (2006) Daedalus , vol.135 , pp. 81-95
    • Hacking, I.1
  • 40
    • 84856333006 scopus 로고    scopus 로고
    • Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents
    • Neumann PJ, Cohen JT, Hammitt JK, et al. Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents. Health Econ 2012;21:238-51.
    • (2012) Health Econ , vol.21 , pp. 238-251
    • Neumann, P.J.1    Cohen, J.T.2    Hammitt, J.K.3
  • 41
    • 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, 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
  • 42
    • 84055217086 scopus 로고    scopus 로고
    • Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility
    • Kopits IM, Chen C, Roberts JS. Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility. Genet Test Mol Biomarkers 2011;15:871-5.
    • (2011) Genet Test Mol Biomarkers , vol.15 , pp. 871-875
    • Kopits, I.M.1    Chen, C.2    Roberts, J.S.3
  • 43
    • 0032433461 scopus 로고    scopus 로고
    • The autonomy paradox: predictive genetic testing and autonomy: three essential problems
    • Huibers AK, van't Spijker A. The autonomy paradox: predictive genetic testing and autonomy: three essential problems. Patient Educ Couns 1998;35:53-62.
    • (1998) Patient Educ Couns , vol.35 , pp. 53-62
    • Huibers, A.K.1    van't Spijker, A.2
  • 44
    • 84872194863 scopus 로고    scopus 로고
    • The challenge of personal genomics in Germany
    • Vayena E, Prainsack B. The challenge of personal genomics in Germany. Nat Biotechnol 2013;31:16-7.
    • (2013) Nat Biotechnol , vol.31 , pp. 16-17
    • Vayena, E.1    Prainsack, B.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.