메뉴 건너뛰기




Volumn 130, Issue 3, 2011, Pages 403-413

Children and biobanks: A review of the ethical and legal discussion

Author keywords

[No Author keywords available]

Indexed keywords

BIOBANK; BLOOD; BLOOD SPOT; CHILD; GOVERNMENT REGULATION; HEALTH CARE FACILITY; HUMAN; INFORMED CONSENT; MEDICAL RESEARCH; MEDICOLEGAL ASPECT; PRACTICE GUIDELINE; PRIORITY JOURNAL; RESEARCH ETHICS; REVIEW; RISK BENEFIT ANALYSIS; TISSUE PREPARATION; ETHICS; LEGAL ASPECT; ORGANIZATION AND MANAGEMENT; PATIENT RIGHT; PRESCHOOL CHILD; RISK ASSESSMENT;

EID: 80053314110     PISSN: 03406717     EISSN: 14321203     Source Type: Journal    
DOI: 10.1007/s00439-011-1031-8     Document Type: Review
Times cited : (44)

References (56)
  • 2
    • 11844298583 scopus 로고    scopus 로고
    • Children's consent to research participation: Social context and personal experience in validate fixed cutoV rules
    • Ashcroft R, Goodenough T, Williamson E, Kent J (2003) Children's consent to research participation: social context and personal experience in validate Wxed cutoV rules. Am J Bioeth 3:16-18
    • (2003) Am J Bioeth , vol.3 , pp. 16-18
    • Ashcroft, R.1    Goodenough, T.2    Williamson, E.3    Kent, J.4
  • 3
    • 84992803508 scopus 로고    scopus 로고
    • Parents' attitudes to neonatal research involving venepuncture
    • Berrington JE, Snowdon C, Fenton AC (2010) Parents' attitudes to neonatal research involving venepuncture. Clin Ethics 5:148-155
    • (2010) Clin Ethics , vol.5 , pp. 148-155
    • Berrington, J.E.1    Snowdon, C.2    Fenton, A.C.3
  • 4
    • 78650589877 scopus 로고    scopus 로고
    • Biobanking in pediatrics: The human nonsubjects approach
    • Brothers KB (2011) Biobanking in pediatrics: the human nonsubjects approach. Per Med 8(1):71-79
    • (2011) Per Med , vol.8 , Issue.1 , pp. 71-79
    • Brothers, K.B.1
  • 5
    • 70449393688 scopus 로고    scopus 로고
    • Biobanks: Too long to wait for consent
    • Brothers KB, Clayton EW (2009) Biobanks: too long to wait for consent. Science 326:798
    • (2009) Science , vol.326 , pp. 798
    • Brothers, K.B.1    Clayton, E.W.2
  • 6
    • 33745738700 scopus 로고    scopus 로고
    • Ethical issues arising from the participation of children in genetic research
    • Burke W, Diekema DS (2006) Ethical issues arising from the participation of children in genetic research. J Pediatr 149:34-38
    • (2006) J Pediatr , vol.149 , pp. 34-38
    • Burke, W.1    Diekema, D.S.2
  • 7
    • 0035318620 scopus 로고    scopus 로고
    • Solidarity and equity: New ethical frameworks for genetic databases
    • DOI 10.1038/35066094
    • Chadwick R, Berg K (2001) Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet 2:318-321 (Pubitemid 33674780)
    • (2001) Nature Reviews Genetics , vol.2 , Issue.4 , pp. 318-321
    • Chadwick, R.1    Berg, K.2
  • 8
    • 33751577152 scopus 로고
    • S.Q. 1991, Province of Québec
    • Civil Code of Québec (CCQ) (1991), S.Q., 1991, c. 64, Province of Québec
    • (1991) Civil Code of Québec (CCQ) , pp. 64
  • 9
    • 80054729776 scopus 로고    scopus 로고
    • Code de la santé publique (France's Code of Public Health)
    • 9, August
    • Code de la santé publique (France's Code of Public Health), modiWed by Law no 2004-806 (9, August, 2004)
    • (2004) ModiWed by Law No 2004-806
  • 11
  • 14
    • 33749452723 scopus 로고    scopus 로고
    • Private and ethics in pediatric environmental health research - Part II: Protecting families and communities
    • DOI 10.1289/ehp.9004
    • Fisher CB (2006) Privacy and ethics in pediatric environmental health research-part II: protecting families and communities. Environ Health Perspect 114:1622-1625 (Pubitemid 44509666)
    • (2006) Environmental Health Perspectives , vol.114 , Issue.10 , pp. 1622-1625
    • Fisher, C.B.1
  • 16
    • 70249122789 scopus 로고    scopus 로고
    • Pediatric biobanks: Approaching informed consent for continuing research after children grow up
    • Goldenberg AJ, Hull SC, Botkin JR, Wilfond BS (2009) Pediatric biobanks: approaching informed consent for continuing research after children grow up. J Pediatr 155:578-583
    • (2009) J Pediatr , vol.155 , pp. 578-583
    • Goldenberg, A.J.1    Hull, S.C.2    Botkin, J.R.3    Wilfond, B.S.4
  • 17
    • 70349480193 scopus 로고    scopus 로고
    • Ethical protection in research: Including children in the debate
    • Smyth M, Williamson E (eds). The Policy Press, Bristol
    • Goodenough T, Williamson E, Kent J, Ashcroft R (2004) Ethical protection in research: including children in the debate. In: Smyth M, Williamson E (eds) Researchers and their 'subjects'. The Policy Press, Bristol, pp 55-72
    • (2004) Researchers and Their 'Subjects' , pp. 55-72
    • Goodenough, T.1    Williamson, E.2    Kent, J.3    Ashcroft, R.4
  • 19
    • 70449427848 scopus 로고    scopus 로고
    • Research ethics children and population biobanks response to comments
    • Gurwitz D, Fortier I, Lunshof JE, Knoppers BM (2009b) Research ethics children and population biobanks response to comments. Science 326:799
    • (2009) Science , vol.326 , pp. 799
    • Gurwitz, D.1    Fortier, I.2    Lunshof, J.E.3    Knoppers, B.M.4
  • 20
    • 17444372789 scopus 로고    scopus 로고
    • Scientific research is a moral duty
    • DOI 10.1136/jme.2005.011973
    • Harris J (2005) Scientific research is a moral duty. J Med Ethics 31:242-248 (Pubitemid 40542138)
    • (2005) Journal of Medical Ethics , vol.31 , Issue.4 , pp. 242-248
    • Harris, J.M.1
  • 21
    • 29244461472 scopus 로고    scopus 로고
    • Children, longitudinal studies, and informed consent
    • Helgesson G (2005) Children, longitudinal studies, and informed consent. Medicine. Health Care Philos 8:307
    • (2005) Medicine. Health Care Philos , vol.8 , pp. 307
    • Helgesson, G.1
  • 22
    • 34948896417 scopus 로고    scopus 로고
    • Ethical framework for previously collected biobank samples [5]
    • DOI 10.1038/nbt0907-973b, PII NBT0907973B
    • Helgesson G, Dillner J, Carlson J, Bartram CR, Hansson MG (2007) Ethical framework for previously collected biobank samples. Nat Biotechnol 25(9):973-976 (Pubitemid 47517629)
    • (2007) Nature Biotechnology , vol.25 , Issue.9 , pp. 973-976
    • Helgesson, G.1    Dillner, J.2    Carlson, J.3    Bartram, C.R.4    Hansson, M.G.5
  • 24
    • 70349498476 scopus 로고    scopus 로고
    • Genetic research on stored tissue samples from minors: A systematic review of the ethical literature
    • Hens K, Nys H, Cassiman JJ, Dierickx K (2009a) Genetic research on stored tissue samples from minors: a systematic review of the ethical literature. Am J Med Genet A 149A:2346-2358
    • (2009) Am J Med Genet A , vol.149 A , pp. 2346-2358
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3    Dierickx, K.4
  • 25
    • 70449359800 scopus 로고    scopus 로고
    • Biobanks: Oversight offers protection
    • Hens K, Wright J, Dierickx K (2009b) Biobanks: oversight offers protection. Science 326:798-799
    • (2009) Science , vol.326 , pp. 798-799
    • Hens, K.1    Wright, J.2    Dierickx, K.3
  • 26
    • 77956921791 scopus 로고    scopus 로고
    • The use of diagnostic collections of DNA for research: Interviews at the eight Belgian centers for human genetics
    • Hens K, Nys H, Cassiman JJ, Dierickx K (2010a) The use of diagnostic collections of DNA for research: interviews at the eight Belgian centers for human genetics. Eur J Med Genet 53:274-279
    • (2010) Eur J Med Genet , vol.53 , pp. 274-279
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3    Dierickx, K.4
  • 27
    • 77954435949 scopus 로고    scopus 로고
    • An exploratory survey of professionals on the use of stored tissue samples from minors for genetic research
    • Hens K, Snoeck J, Nys H, Cassiman JJ, Dierickx K (2010b) An exploratory survey of professionals on the use of stored tissue samples from minors for genetic research. Genet Mol Res 9:973-980
    • (2010) Genet Mol Res , vol.9 , pp. 973-980
    • Hens, K.1    Snoeck, J.2    Nys, H.3    Cassiman, J.J.4    Dierickx, K.5
  • 28
    • 79959232331 scopus 로고    scopus 로고
    • Children, biobanks and the scope of parental consent
    • doi:10.1038/ejhg.2011.29
    • Hens K, Nys H, Cassiman JJ, Dierickx K (2011a) Children, biobanks and the scope of parental consent. Eur J Human Genet doi:10.1038/ejhg.2011.29
    • (2011) Eur J Human Genet
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3    Dierickx, K.4
  • 29
    • 79951774156 scopus 로고    scopus 로고
    • The return of individual research Wndings in paediatric genetic research
    • Hens K, Nys H, Cassiman JJ, Dierickx K (2011b) The return of individual research Wndings in paediatric genetic research. J Med Ethics 37:179-183
    • (2011) J Med Ethics , vol.37 , pp. 179-183
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3    Dierickx, K.4
  • 30
    • 79954417226 scopus 로고    scopus 로고
    • Risks, benefits, solidarity: A framework for the participation of children in Genetic Biobank Research
    • doi:10.1016/j.jpeds.2010.12.036
    • Hens K, Nys H, Cassiman JJ, Dierickx K (2011c) Risks, benefits, solidarity: a framework for the participation of children in Genetic Biobank Research. J Pediatr doi:10.1016/j.jpeds.2010.12.036
    • (2011) J Pediatr
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3    Dierickx, K.4
  • 31
    • 79952448540 scopus 로고    scopus 로고
    • The storage and use of biological tissue samples from minors for research: A focus group study
    • Hens K, Nys H, Cassiman JJ, Dierickx K (2011d) The storage and use of biological tissue samples from minors for research: a focus group study. Public Health Genomics 14:68-76
    • (2011) Public Health Genomics , vol.14 , pp. 68-76
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3    Dierickx, K.4
  • 32
    • 33750910241 scopus 로고    scopus 로고
    • Does an appeal to the common good justify individual sacrifices for genomic research?
    • DOI 10.1007/s11017-006-9015-8
    • Hoedemaekers R, Gordijn B, Pijnenburg M (2006) Does an appeal to the common good justify individual sacriWces for genomic research? Theor Med Bioeth 27:415-431 (Pubitemid 44725404)
    • (2006) Theoretical Medicine and Bioethics , vol.27 , Issue.5 , pp. 415-431
    • Hoedemaekers, R.1    Gordijn, B.2    Pijnenburg, M.3
  • 33
    • 34249786238 scopus 로고    scopus 로고
    • Solidarity and justice as guiding principles in genomic research
    • DOI 10.1111/j.1467-8519.2007.00562.x
    • Hoedemaekers R, Gordijn B, Pijnenburg M (2007) Solidarity and justice as guiding principles in genomic research. Bioethics 21: 342-350 (Pubitemid 46854981)
    • (2007) Bioethics , vol.21 , Issue.6 , pp. 342-350
    • Hoedemaekers, R.1    Gordijn, B.2    Pijnenburg, M.3
  • 34
    • 29244477168 scopus 로고    scopus 로고
    • Informed consent and the bio-banking of material from children
    • Holm S (2005) Informed consent and the bio-banking of material from children. Genomics Soc Policy 1:16-26
    • (2005) Genomics Soc Policy , vol.1 , pp. 16-26
    • Holm, S.1
  • 38
    • 0038392811 scopus 로고    scopus 로고
    • UK launch "virtual" tumour bank to improve treatment research
    • Kerr C (2003) UK launch "virtual" tumour bank to improve treatment research. Lancet Oncol 4:264 (Pubitemid 36592484)
    • (2003) Lancet Oncology , vol.4 , Issue.5 , pp. 264
    • Kerr, C.1
  • 39
    • 33747353141 scopus 로고    scopus 로고
    • Population-based retrieval of newborn dried blood spots for researching paediatric cancer susceptibility genes
    • Klotz J, Bryant P, Wilcox HB, Dillon M, Wolf B, Fagliano J (2006) Population-based retrieval of newborn dried blood spots for researching paediatric cancer susceptibility genes. Pediatr Perinat Epidemiol 20:449-452
    • (2006) Pediatr Perinat Epidemiol , vol.20 , pp. 449-452
    • Klotz, J.1    Bryant, P.2    Wilcox, H.B.3    Dillon, M.4    Wolf, B.5    Fagliano, J.6
  • 40
    • 0036255394 scopus 로고    scopus 로고
    • Children and incompetent adults in genetic research: Consent and safeguards
    • DOI 10.1038/nrg750
    • Knoppers BM, Avard D, Cardinal G, Glass KC (2002) Science and society: children and incompetent adults in genetic research: consent and safeguards. Nat Rev Genet 3:221-225 (Pubitemid 34506590)
    • (2002) Nature Reviews Genetics , vol.3 , Issue.3 , pp. 221-225
    • Knoppers, B.M.1    Avard, D.2    Cardinal, G.3    Glass, K.C.4
  • 41
    • 80054748089 scopus 로고    scopus 로고
    • Consent to research: Exceptional situations
    • Lévesque E, Fraser W, Knoppers BM (2009) Consent to research: exceptional situations. GenEdit 7(3):1-12
    • (2009) GenEdit , vol.7 , Issue.3 , pp. 1-12
    • Lévesque, E.1    Fraser, W.2    Knoppers, B.M.3
  • 42
    • 79951989248 scopus 로고    scopus 로고
    • Obliging children
    • Lyons B (2011) Obliging children. Med Law Rev 19:55-85
    • (2011) Med Law Rev , vol.19 , pp. 55-85
    • Lyons, B.1
  • 46
    • 10344250393 scopus 로고    scopus 로고
    • The Avon Longitudinal Study of Parents and Children (ALSPAC): A resource for genetic epidemiology
    • Pembrey M (2004) The avon longitudinal study of parents and children (ALSPAC): a resource for genetic epidemiology. Eur J Endocrinol 151(Suppl 3):U125-U129 (Pubitemid 39627066)
    • (2004) European Journal of Endocrinology, Supplement , vol.151 , Issue.3
    • Pembrey, M.1
  • 47
    • 53549091293 scopus 로고    scopus 로고
    • Born in Bradford, a cohort study of babies born in Bradford, and their parents: Protocol for the recruitment phase
    • Born in Bradford Collaborative Group
    • Raynor P, Born in Bradford Collaborative Group (2008) Born in Bradford, a cohort study of babies born in Bradford, and their parents: Protocol for the recruitment phase. BMC Public Health 8:327
    • (2008) BMC Public Health , vol.8 , pp. 327
    • Raynor, P.1
  • 48
    • 77951571382 scopus 로고    scopus 로고
    • Handling ethical, legal and social issues in birth cohort studies involving genetic research: Responses from studies in six countries
    • Ries NM, Legrandeur J, CaulWeld T (2010) Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries. BMC Med Ethics 11:4
    • (2010) BMC Med Ethics , vol.11 , pp. 4
    • Ries, N.M.1    Legrandeur, J.2    Caulweld, T.3
  • 50
    • 77956396767 scopus 로고    scopus 로고
    • Is deidentification suYcient to protect health privacy in research?
    • Rothstein MA (2010) Is deidentification suYcient to protect health privacy in research? Am J Bioeth 10(9):3-11
    • (2010) Am J Bioeth , vol.10 , Issue.9 , pp. 3-11
    • Rothstein, M.A.1
  • 51
    • 7644233870 scopus 로고    scopus 로고
    • United Nations Educational, Scientific and Cultural Organization (UNESCO), Paris
    • United Nations Educational, Scientific and Cultural Organization (UNESCO) (2003) International declaration on human genetic data, Paris
    • (2003) International Declaration on Human Genetic Data
  • 52
    • 84866274183 scopus 로고    scopus 로고
    • Children as means and ends in large-scale medical research
    • doi:10.1111/j.1467-8519.2010.01873.x
    • Williams G (2011) Children as means and ends in large-scale medical research. Bioethics. doi:10.1111/j.1467-8519.2010.01873.x
    • (2011) Bioethics.
    • Williams, G.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.