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Volumn 40, Issue 3, 2014, Pages 163-167

What ethical and legal principles should guide the genotyping of children as part of a personalised screening programme for common cancer?

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; AUTONOMY; ETHICS; EUROPE; FEMALE; GENETHICS; GENETIC PREDISPOSITION; GENETIC SCREENING; GENETIC SCREENING/TESTING; GENETICS; GENOTYPE; HUMAN; INFANT; LEGAL ASPECT; MALE; MASS SCREENING; MORALITY; NEOPLASM; NEWBORNS AND MINORS; PARENTAL CONSENT; PERSONALIZED MEDICINE; PREDICTIVE VALUE; PRESCHOOL CHILD; PUBLIC HEALTH ETHICS; RISK ASSESSMENT; RISK FACTOR;

EID: 84894241639     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/medethics-2012-101079     Document Type: Article
Times cited : (12)

References (53)
  • 1
    • 84894275630 scopus 로고    scopus 로고
    • Human Genetics Commission. Profiling the newborn: a prospective gene technology?
    • Human Genetics Commission. Profiling the newborn: a prospective gene technology? http://www.hgc.gov.uk 2005.
  • 2
    • 79955793051 scopus 로고    scopus 로고
    • Polygenic susceptibility to prostate and breast cancer; implications for personalised screening
    • Pashayan N, Duffy SW, Chowdhury S, et al. Polygenic susceptibility to prostate and breast cancer; implications for personalised screening. Br J Cancer 2011; 104(10):1-8.
    • (2011) Br J Cancer , vol.104 , Issue.10 , pp. 1-8
    • Pashayan, N.1    Duffy, S.W.2    Chowdhury, S.3
  • 3
    • 79952763424 scopus 로고    scopus 로고
    • Genetic testing and common disorders in a public health framework: how to assess relevance and possibilities
    • Becker F, van El CG, Ibarreta D, et al. Genetic testing and common disorders in a public health framework: how to assess relevance and possibilities. Eur J Hum Genet 2011;19:S6-S44.
    • (2011) Eur J Hum Genet , vol.19
    • Becker, F.1    van El, C.G.2    Ibarreta, D.3
  • 4
    • 84863393329 scopus 로고    scopus 로고
    • Prevention of breast cancer in the context of a national breast screening programme
    • Howell A, Astley S, Warwick J, et al. Prevention of breast cancer in the context of a national breast screening programme. J Intern Med 2012;271:321-30.
    • (2012) J Intern Med , vol.271 , pp. 321-330
    • Howell, A.1    Astley, S.2    Warwick, J.3
  • 5
    • 84859361181 scopus 로고    scopus 로고
    • Overdiagnosis in breast cancer screening: time to tackle an underappreciated harm
    • Elmore JG, Fletcher SW. Overdiagnosis in breast cancer screening: time to tackle an underappreciated harm. Ann Intern Med 2012;156:536-7.
    • (2012) Ann Intern Med , vol.156 , pp. 536-537
    • Elmore, J.G.1    Fletcher, S.W.2
  • 6
    • 84894284724 scopus 로고    scopus 로고
    • British Society of Human Genetics. Genetic testing of children: report of a working party of the British Society of Human Genetics. Br Soc Hum Genet 2010.
    • British Society of Human Genetics. Genetic testing of children: report of a working party of the British Society of Human Genetics. Br Soc Hum Genet 2010.
  • 7
    • 84866348762 scopus 로고    scopus 로고
    • Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments
    • Mand C, Gillam L, Delatycki MB, et al. Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments. J Med Ethics 2012;38(9):519-24.
    • (2012) J Med Ethics , vol.38 , Issue.9 , pp. 519-524
    • Mand, C.1    Gillam, L.2    Delatycki, M.B.3
  • 8
    • 85027942547 scopus 로고    scopus 로고
    • Commentary on predictive genetic testing of minors: by Mand et al
    • Clarke A. Commentary on predictive genetic testing of minors: by Mand et al. J Med Ethics 2012;38(9):527-8.
    • (2012) J Med Ethics , vol.38 , Issue.9 , pp. 527-528
    • Clarke, A.1
  • 9
    • 84864015887 scopus 로고    scopus 로고
    • Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening
    • Nicholls SG. Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening. J Med Ethics 2011;38(5):299-303.
    • (2011) J Med Ethics , vol.38 , Issue.5 , pp. 299-303
    • Nicholls, S.G.1
  • 10
    • 21744455286 scopus 로고    scopus 로고
    • Newborn screening: new developments, new dilemmas
    • Kerruish NJ, Robertson SP. Newborn screening: new developments, new dilemmas. J Med Ethics 2005;31:393-8.
    • (2005) J Med Ethics , vol.31 , pp. 393-398
    • Kerruish, N.J.1    Robertson, S.P.2
  • 11
    • 79955507522 scopus 로고    scopus 로고
    • Parents' attitudes towards pediatric genetic testing for common disease risk
    • Tercyak KP, Hensley Alfond S, Emmons KM, et al. Parents' attitudes towards pediatric genetic testing for common disease risk. Pediatrics 2011;127(5): 1288-95.
    • (2011) Pediatrics , vol.127 , Issue.5 , pp. 1288-95
    • Tercyak, K.P.1    Hensley Alfond, S.2    Emmons, K.M.3
  • 12
    • 0001849560 scopus 로고    scopus 로고
    • Psychosocial impact of predictive testing for illness on children and families: challenges for a new millenium
    • Tercyak KP, Streisand R, Peshkin B, et al. Psychosocial impact of predictive testing for illness on children and families: challenges for a new millenium. J Clin Psychol Med Settings 2000;7(1):55-68.
    • (2000) J Clin Psychol Med Settings , vol.7 , Issue.1 , pp. 55-68
    • Tercyak, K.P.1    Streisand, R.2    Peshkin, B.3
  • 14
    • 84859313496 scopus 로고    scopus 로고
    • Modeling decisions to undergo genetic testing for susceptibility to common health conditions: an ancilliary study of the multiplex initiative
    • Wade CH, Shiloh S, Woolford SW, et al. Modeling decisions to undergo genetic testing for susceptibility to common health conditions: an ancilliary study of the multiplex initiative. Psychol Health 2012;27(4):430-44.
    • (2012) Psychol Health , vol.27 , Issue.4 , pp. 430-444
    • Wade, C.H.1    Shiloh, S.2    Woolford, S.W.3
  • 15
    • 67349130249 scopus 로고    scopus 로고
    • Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics
    • Public and Professional Policy Commitee ESHG
    • Public and Professional Policy Commitee ESHG. Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics. Eur J Hum Genet 2009;17:720-1.
    • (2009) Eur J Hum Genet , vol.17 , pp. 720-721
  • 16
    • 0033002158 scopus 로고    scopus 로고
    • Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia
    • Senior V, Marteau TM, Peters TJ. Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia. Soc Sci Med 1999;48:1857-60.
    • (1999) Soc Sci Med , vol.48 , pp. 1857-1860
    • Senior, V.1    Marteau, T.M.2    Peters, T.J.3
  • 17
    • 84859583108 scopus 로고    scopus 로고
    • Opportunities and challenges for the integration of massively parrallel genomic sequencing into clinical practice: lessons from the Clinseq project
    • Biesecker LG. Opportunities and challenges for the integration of massively parrallel genomic sequencing into clinical practice: lessons from the Clinseq project. Genet Med 2012;14(4):393-8.
    • (2012) Genet Med , vol.14 , Issue.4 , pp. 393-398
    • Biesecker, L.G.1
  • 18
    • 70449719034 scopus 로고    scopus 로고
    • Social networkers' attitudes toward direct-to-consumer personal genome testing
    • McGuire AL, Diaz CM, Wang T, et al. Social networkers' attitudes toward direct-to-consumer personal genome testing. Am J Bioeth 2009;9(6-7):3-10.
    • (2009) Am J Bioeth , vol.9 , Issue.6-7 , pp. 3-10
    • McGuire, A.L.1    Diaz, C.M.2    Wang, T.3
  • 19
    • 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(6):524-34.
    • (2011) N Engl J Med , vol.364 , Issue.6 , pp. 524-534
    • Bloss, C.S.1    Schork, N.J.2    Topol, E.J.3
  • 20
    • 33644850253 scopus 로고    scopus 로고
    • Predictive genetic testing in young people for adult-onset conditions: where is the empirical evidence?
    • Duncan R, Deltycki MB. Predictive genetic testing in young people for adult-onset conditions: where is the empirical evidence? Clin Genet 2006;69:8-16.
    • (2006) Clin Genet , vol.69 , pp. 8-16
    • Duncan, R.1    Deltycki, M.B.2
  • 21
    • 0035962376 scopus 로고    scopus 로고
    • Genetic risk and behavioural change
    • Marteau TM, Lerman C. Genetic risk and behavioural change. BMJ 2001;322:1056-9.
    • (2001) BMJ , vol.322 , pp. 1056-1059
    • Marteau, T.M.1    Lerman, C.2
  • 22
    • 55049135914 scopus 로고    scopus 로고
    • Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours (Review)
    • Art No. CD007275
    • Marteau TM, French DP, Griffin SJ, et al. Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours (Review). Cochrane Database Syst Rev 2010;2010(10):Art No. CD007275.
    • (2010) Cochrane Database Syst Rev , vol.2010 , Issue.10
    • Marteau, T.M.1    French, D.P.2    Griffin, S.J.3
  • 23
    • 0034908030 scopus 로고    scopus 로고
    • Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants
    • Tercyak KP, Peshkin BN, Streisand R, et al. Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psychooncology 2001;10:336-46.
    • (2001) Psychooncology , vol.10 , pp. 336-346
    • Tercyak, K.P.1    Peshkin, B.N.2    Streisand, R.3
  • 24
    • 33747403754 scopus 로고    scopus 로고
    • Parental attitudes to the identification of their infants as carriers of cystic fibrosis by newborn screening
    • Lewis S, Curnow L, Ross M, et al. Parental attitudes to the identification of their infants as carriers of cystic fibrosis by newborn screening. J Paediatr Child Health 2006;42:533-7.
    • (2006) J Paediatr Child Health , vol.42 , pp. 533-537
    • Lewis, S.1    Curnow, L.2    Ross, M.3
  • 25
    • 77951643529 scopus 로고    scopus 로고
    • The right not to know and preimplantation genetic diagnosis for Huntington's disease
    • Asscher E, Koops BJ. The right not to know and preimplantation genetic diagnosis for Huntington's disease. J Med Ethics 2010;36:30-3.
    • (2010) J Med Ethics , vol.36 , pp. 30-33
    • Asscher, E.1    Koops, B.J.2
  • 26
    • 70349490774 scopus 로고    scopus 로고
    • Parental authority, future autonomy, and assessing risks of predictive genetic testing in minors
    • Boyce A, Borry P. Parental authority, future autonomy, and assessing risks of predictive genetic testing in minors. Bioethical Inquiry 2009;6:379-85.
    • (2009) Bioethical Inquiry , vol.6 , pp. 379-385
    • Boyce, A.1    Borry, P.2
  • 27
    • 17944402392 scopus 로고    scopus 로고
    • Parental attitude towards genetic testing for familial hypercholesterolaemia in children
    • Umans-Eckenhausen MA, Oort FJ, Ferenschild KC, et al. Parental attitude towards genetic testing for familial hypercholesterolaemia in children. J Med Genet 2002;39(e49):1-4.
    • (2002) J Med Genet , vol.39 , Issue.E49 , pp. 1-4
    • Umans-Eckenhausen, M.A.1    Oort, F.J.2    Ferenschild, K.C.3
  • 28
    • 79960191924 scopus 로고    scopus 로고
    • Clinical utility of family history for cancer screening and referral in primary care: a report from the family healthware impact trial
    • Rubinstein WS, Acheson LS, O'Neill SM, et al. Clinical utility of family history for cancer screening and referral in primary care: a report from the family healthware impact trial. Genet Med 2012;13(11):956-65.
    • (2012) Genet Med , vol.13 , Issue.11 , pp. 956-965
    • Rubinstein, W.S.1    Acheson, L.S.2    O'Neill, S.M.3
  • 29
    • 80755139422 scopus 로고    scopus 로고
    • To share or not to share: a randomized trial of consent for data sharing in genome research
    • McGuire AL, Oliver JM, Slashinski MJ, et al. To share or not to share: a randomized trial of consent for data sharing in genome research. Genet Med 2011;13(11):948-55.
    • (2011) Genet Med , vol.13 , Issue.11 , pp. 948-955
    • McGuire, A.L.1    Oliver, J.M.2    Slashinski, M.J.3
  • 30
    • 84860769283 scopus 로고    scopus 로고
    • Know your genes. The marketing of direct-to-consumer genetic testing. Predictive or preposterous? The marketing of DTC genetic testing.
    • Caulfield T. Know your genes. The marketing of direct-to-consumer genetic testing. Predictive or preposterous? The marketing of DTC genetic testing. J Sci Commun 2011;10(3):1-5.
    • (2011) J Sci Commun , vol.10 , Issue.3 , pp. 1-5
    • Caulfield, T.1
  • 31
    • 0032227207 scopus 로고    scopus 로고
    • Geneticization, medicalisation and polemics
    • Hedgecoe A. Geneticization, medicalisation and polemics. Med Health Care Philos 1998;1:235-43.
    • (1998) Med Health Care Philos , vol.1 , pp. 235-243
    • Hedgecoe, A.1
  • 32
    • 36049004925 scopus 로고    scopus 로고
    • Geneticization and bioethics: advancing debate and research
    • Árnason V, Hjörleifsson S. Geneticization and bioethics: advancing debate and research. Med Health Care Philos 2007;10:417-31.
    • (2007) Med Health Care Philos , vol.10 , pp. 417-431
    • Árnason, V.1    Hjörleifsson, S.2
  • 33
    • 34447515456 scopus 로고    scopus 로고
    • Minors and informed consent: a comparative approach
    • Stultiëns L, Goffin T, Borry P, et al. Minors and informed consent: a comparative approach. Eur J Health Law 2007;14:21-46.
    • (2007) Eur J Health Law , vol.14 , pp. 21-46
    • Stultiëns, L.1    Goffin, T.2    Borry, P.3
  • 34
    • 31344443014 scopus 로고    scopus 로고
    • Carrier testing in minors: a systematic review of guidelines and position papers
    • Borry P, Fryns JP, Schotsmans P, et al. Carrier testing in minors: a systematic review of guidelines and position papers. Eur J Hum Genet 2006;14:133-8.
    • (2006) Eur J Hum Genet , vol.14 , pp. 133-138
    • Borry, P.1    Fryns, J.P.2    Schotsmans, P.3
  • 35
    • 55449087491 scopus 로고    scopus 로고
    • Minors and informed consent in carrier testing: a survey of European clinical geneticists
    • Borry P, Stultiens L, Goffin T, et al. Minors and informed consent in carrier testing: a survey of European clinical geneticists. J Med Ethics 2008;34:370-4.
    • (2008) J Med Ethics , vol.34 , pp. 370-374
    • Borry, P.1    Stultiens, L.2    Goffin, T.3
  • 36
    • 67749109823 scopus 로고    scopus 로고
    • Biological sample collections from minors for genetic research: a systematic review of guidelines and position papers
    • Hens K, Nys H, Cassiman JJ, et al. Biological sample collections from minors for genetic research: a systematic review of guidelines and position papers. Eur J Hum Genet 2009;17:979-90.
    • (2009) Eur J Hum Genet , vol.17 , pp. 979-990
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3
  • 37
    • 33749473075 scopus 로고    scopus 로고
    • Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers
    • Borry P, Stultiëns L, Nys N, et al. Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Clin Genet 2006;70:374-81.
    • (2006) Clin Genet , vol.70 , pp. 374-381
    • Borry, P.1    Stultiëns, L.2    Nys, N.3
  • 38
    • 84894254648 scopus 로고    scopus 로고
    • Clinical Genetics Society. Genetic testing of children: Report of a working party of the clinical genetics society. Br Soc Hum Genet 1994.
    • Clinical Genetics Society. Genetic testing of children: Report of a working party of the clinical genetics society. Br Soc Hum Genet 1994.
  • 39
    • 67349164838 scopus 로고    scopus 로고
    • Genetic testing in asymptomatic minors Background considerations towards the ESHG Recommendations.
    • Borry P, Evers-Kiebooms G, Cornel MC, et al. Genetic testing in asymptomatic minors. Background considerations towards the ESHG Recommendations. Eur J Hum Genet 2009;17:711-19.
    • (2009) Eur J Hum Genet , vol.17 , pp. 711-719
    • Borry, P.1    Evers-Kiebooms, G.2    Cornel, M.C.3
  • 40
    • 84894260859 scopus 로고
    • Children Act. Chapter 41 UK Parliament The Stationery Office
    • Children Act. Chapter 41 UK Parliament The Stationery Office 1989.
    • (1989)
  • 41
    • 84894235205 scopus 로고    scopus 로고
    • High Court of Justice Family Division. An NHS Trust v MB (A child represented by the Children and Family Court Advisory & Support Service as guardian ad litem), Mr & Mrs B (parents). [2006] EWHC 507 (Fam) 2006.
    • High Court of Justice Family Division. An NHS Trust v MB (A child represented by the Children and Family Court Advisory & Support Service as guardian ad litem), Mr & Mrs B (parents). [2006] EWHC 507 (Fam) 2006.
  • 43
    • 84894280693 scopus 로고    scopus 로고
    • Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. Oviedo: Council of Europe
    • Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. Oviedo: Council of Europe, 1997.
    • (1997)
  • 44
    • 3543146182 scopus 로고    scopus 로고
    • 'Family matters': a conceptual framework for genetic testing in children
    • McConkie-Rosell A, Spiridigliozzi GA. 'Family matters': a conceptual framework for genetic testing in children. J Genet Couns 2004;13(1):9-29.
    • (2004) J Genet Couns , vol.13 , Issue.1 , pp. 9-29
    • McConkie-Rosell, A.1    Spiridigliozzi, G.A.2
  • 45
    • 0003522678 scopus 로고
    • Principles and practice of screening for disease
    • Geneva: WHO
    • Wilson JM, Jungner YG. Principles and practice of screening for disease. Geneva: WHO, 1968.
    • (1968)
    • Wilson, J.M.1    Jungner, Y.G.2
  • 46
    • 79958822050 scopus 로고    scopus 로고
    • Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes
    • Kerruish NJ. Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes. J Med Ethics 2011;37:348-53.
    • (2011) J Med Ethics , vol.37 , pp. 348-353
    • Kerruish, N.J.1
  • 47
    • 42049120470 scopus 로고    scopus 로고
    • Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years
    • Andermann A, Blancquaert I, Beauchamp S, et al. Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years. Bull World Health Organisation 2008;86(4):240-320.
    • (2008) Bull World Health Organisation , vol.86 , Issue.4 , pp. 240-320
    • Andermann, A.1    Blancquaert, I.2    Beauchamp, S.3
  • 48
    • 0037413486 scopus 로고    scopus 로고
    • Population screening in the age of genomic medicine
    • Khoury MJ, McCabe LL, McCabe ER. Population screening in the age of genomic medicine. N Engl J Med 2003;348(50):58.
    • (2003) N Engl J Med , vol.348 , Issue.50 , pp. 58
    • Khoury, M.J.1    McCabe, L.L.2    McCabe, E.R.3
  • 49
    • 84894286153 scopus 로고    scopus 로고
    • PHG Foundation. Next steps in the sequence: the implications of whole genome sequencing for health in the UK. Cambridge, UK: PHG Foundation
    • PHG Foundation. Next steps in the sequence: the implications of whole genome sequencing for health in the UK. Cambridge, UK: PHG Foundation, 2011.
    • (2011)
  • 50
    • 84856405512 scopus 로고    scopus 로고
    • The mystery of missing heritability: genetic interactions create phantom heritability
    • Zuk O, Hechter E, Sunyaev SR, et al. The mystery of missing heritability: genetic interactions create phantom heritability. Proc Natl Acad Sci 2012;109:1193-8.
    • (2012) Proc Natl Acad Sci , vol.109 , pp. 1193-1198
    • Zuk, O.1    Hechter, E.2    Sunyaev, S.R.3
  • 51
    • 84856441512 scopus 로고    scopus 로고
    • The ethical hazards and programmatic challenges of genomic newborn screening
    • Goldenberg AJ, Sharp RR. The ethical hazards and programmatic challenges of genomic newborn screening. JAMA 2012;307(5):461-2.
    • (2012) JAMA , vol.307 , Issue.5 , pp. 461-462
    • Goldenberg, A.J.1    Sharp, R.R.2
  • 52
    • 84861408291 scopus 로고    scopus 로고
    • Genomic sequencing in newborn screening programs
    • Dondorp WJ, de Wert GM, Niermeijer MF. Genomic sequencing in newborn screening programs. JAMA 2012;307(20):2146.
    • (2012) JAMA , vol.307 , Issue.20 , pp. 2146
    • Dondorp, W.J.1    de Wert, G.M.2    Niermeijer, M.F.3
  • 53
    • 84861408291 scopus 로고    scopus 로고
    • Genomic sequencing in newborn screening programs
    • Greely SA, Msali M, Acharya K. Genomic sequencing in newborn screening programs. JAMA 2012;307(20):2146-7.
    • (2012) JAMA , vol.307 , Issue.20 , pp. 2146-2147
    • Greely, S.A.1    Msali, M.2    Acharya, K.3


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