메뉴 건너뛰기




Volumn 13, Issue 2, 2016, Pages

When Children Become Adults: Should Biobanks Re-Contact?

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOBANK; CHILDHOOD CANCER; CLINICAL DATA REPOSITORY; HUMAN; IMMATURITY; NEXT GENERATION SEQUENCING; PATIENT AUTONOMY; ADULT; CHILD; CONFIDENTIALITY; INFORMED CONSENT; ORGANIZATION AND MANAGEMENT; PARENT; PSYCHOLOGY;

EID: 84959464338     PISSN: 15491277     EISSN: 15491676     Source Type: Journal    
DOI: 10.1371/journal.pmed.1001959     Document Type: Article
Times cited : (15)

References (35)
  • 1
    • 84872826516 scopus 로고    scopus 로고
    • Characterizing biobank organizations in the U.S.: results from a national survey
    • 23351549, ..:
    • Henderson GE, Cadigan RJ, Edwards TP, Conlon I, Nelson AG, Evans JP, et al. Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med. 2013Jan25. 5:3. doi: 10.1186/gm40723351549
    • (2013) Genome Med , vol.5 , pp. 3
    • Henderson, G.E.1    Cadigan, R.J.2    Edwards, T.P.3    Conlon, I.4    Nelson, A.G.5    Evans, J.P.6
  • 2
    • 33745672350 scopus 로고    scopus 로고
    • Genetics. U.S. hospital launches large biobank of children’s DNA
    • .;:–
    • Kaiser J, Genetics. U.S. hospital launches large biobank of children’s DNA. Science. 2006;312: 1584–1585.
    • (2006) Science , vol.312 , pp. 1584-1585
    • Kaiser, J.1
  • 3
    • 84856923860 scopus 로고    scopus 로고
    • Pediatric biobanking: a pilot qualitative survey of practices, rules, and researcher opinions in ten European countries
    • 24849751, ..;:–
    • Salvaterra E, Giorda R, Bassi MT, Borgatti R, Knudsen LE, Martinuzzi A, et al. Pediatric biobanking: a pilot qualitative survey of practices, rules, and researcher opinions in ten European countries. Biopreservation and Biobanking. 2012;10: 29–36. doi: 10.1089/bio.2011.003724849751
    • (2012) Biopreservation and Biobanking , vol.10 , pp. 29-36
    • Salvaterra, E.1    Giorda, R.2    Bassi, M.T.3    Borgatti, R.4    Knudsen, L.E.5    Martinuzzi, A.6
  • 4
    • 79959232331 scopus 로고    scopus 로고
    • Children, biobanks and the scope of parental consent
    • 21386873
    • Hens K, Cassiman JJ, Nys H, Dierickx K, Children, biobanks and the scope of parental consent. Eur J Hum Genet. 2011;19: 735–739. doi: 10.1038/ejhg.2011.2921386873
    • (2011) Eur J Hum Genet , vol.19 , pp. 735-739
    • Hens, K.1    Cassiman, J.J.2    Nys, H.3    Dierickx, K.4
  • 5
    • 33745738700 scopus 로고    scopus 로고
    • Ethical issues arising from the participation of children in genetic research
    • 16829241
    • Burke W, Diekema DS, Ethical issues arising from the participation of children in genetic research. J Pediatr. 2006;149: S34–S38. 16829241
    • (2006) J Pediatr , vol.149 , pp. S34-S38
    • Burke, W.1    Diekema, D.S.2
  • 6
    • 84959524196 scopus 로고    scopus 로고
    • Re-consent upon reaching the age of majority: ethical issues
    • .;:
    • Resnik D, Re-consent upon reaching the age of majority: ethical issues. Journal of clinical research best practices. 2014;10: 2. http://firstclinical.com/journal/2014/1402_Reconsent.pdf.
    • (2014) Journal of clinical research best practices , vol.10 , pp. 2
    • Resnik, D.1
  • 7
    • 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, Caulfield T, Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries. BMC Med Ethics. 2010;11: doi: 10.1186/1472-6939-11-4
    • (2010) BMC Med Ethics , vol.11
    • Ries, N.M.1    LeGrandeur, J.2    Caulfield, T.3
  • 8
    • 85026973502 scopus 로고    scopus 로고
    • Children’s Cancer and Leukaemia GroupParent/guardian information leaflet. 2013. https://www.securecloudhost.co.uk/cclg.org.uk/dynamic_files/PIS%20V2_0%2024%20May%202013%20(watermarked).pdf
    • (2013) Parent/guardian information leaflet
  • 12
    • 67749109823 scopus 로고    scopus 로고
    • Biological sample collections from minors for genetic research: a systematic review of guidelines and position papers
    • 19223929
    • Hens K, Nys H, Cassiman JJ, Dierickx K, Biological sample collections from minors for genetic research: a systematic review of guidelines and position papers. Eur J Hum Genet. 2009;17: 979–990. doi: 10.1038/ejhg.2009.919223929
    • (2009) Eur J Hum Genet , vol.17 , pp. 979-990
    • Hens, K.1    Nys, H.2    Cassiman, J.J.3    Dierickx, K.4
  • 13
    • 29244461472 scopus 로고    scopus 로고
    • Children, longitudinal studies, and informed consent
    • 16283493
    • Helgesson G, Children, longitudinal studies, and informed consent. Med Health Care Philos. 2005;8: 307–313. 16283493
    • (2005) Med Health Care Philos , vol.8 , pp. 307-313
    • Helgesson, G.1
  • 14
    • 0003793334 scopus 로고
    • . In:.:;. p.–
    • Berlin I, Berlin I, Two concepts of liberty. In: Four Essays on Liberty. London, Oxford, New York: Oxford University Press; 1969. p. 118–172.
    • (1969) Four Essays on Liberty , pp. 118-172
    • Berlin, I.1    Berlin, I.2
  • 15
    • 79960834031 scopus 로고    scopus 로고
    • Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy
    • 21538687
    • 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. doi: 10.1002/humu.2151821538687
    • (2011) Hum Mutat , vol.32 , pp. 861-867
    • Bredenoord, A.L.1    Onland-Moret, N.C.2    van Delden, J.J.M.3
  • 16
    • 84865767565 scopus 로고    scopus 로고
    • Inclusion of residual tissue in biobanks: opt-in or opt-out?
    • 22899893, .;:
    • Giesbertz NAA, Bredenoord AL, van Delden JJM, Inclusion of residual tissue in biobanks: opt-in or opt-out?PLoS Biol. 2012;10: e1001373. doi: 10.1371/journal.pbio.100137322899893
    • (2012) PLoS Biol , vol.10 , pp. e1001373
    • Giesbertz, N.A.A.1    Bredenoord, A.L.2    van Delden, J.J.M.3
  • 18
    • 84897688432 scopus 로고    scopus 로고
    • The right to an open future concerning genetic information
    • .;:–
    • Bredenoord AL, de Vries MC, van Delden H, The right to an open future concerning genetic information. Am J Bioeth. 2014;14: 21–23.
    • (2014) Am J Bioeth , vol.14 , pp. 21-23
    • Bredenoord, A.L.1    de Vries, M.C.2    van Delden, H.3
  • 19
    • 79151476271 scopus 로고    scopus 로고
    • Disclosure of individual genetic data to research participants: the debate reconsidered
    • 21190750
    • Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJM, Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet. 2011;27: 41–47. doi: 10.1016/j.tig.2010.11.00421190750
    • (2011) Trends Genet , vol.27 , pp. 41-47
    • Bredenoord, A.L.1    Kroes, H.Y.2    Cuppen, E.3    Parker, M.4    van Delden, J.J.M.5
  • 20
    • 84871185661 scopus 로고    scopus 로고
    • Developing a policy for paediatric biobanks: principles for good practice
    • 22713814, ..;:–
    • Hens K, Van El CE, Borry P, Cambon-Thomsen A, Cornel MC, Forzano F, et al. Developing a policy for paediatric biobanks: principles for good practice. Eur J Hum Genet. 2013;21: 2–7. doi: 10.1038/ejhg.2012.9922713814
    • (2013) Eur J Hum Genet , vol.21 , pp. 2-7
    • Hens, K.1    Van El, C.E.2    Borry, P.3    Cambon-Thomsen, A.4    Cornel, M.C.5    Forzano, F.6
  • 21
    • 84876686784 scopus 로고    scopus 로고
    • Next-generation sequencing: does the next generation still have a right to an open future?
    • 23729034, .;:
    • Bredenoord AL, de Vries MC, van Delden JJM, Next-generation sequencing: does the next generation still have a right to an open future?Nat Rev Genet. 2013;14: 306. 23729034
    • (2013) Nat Rev Genet , vol.14 , pp. 306
    • Bredenoord, A.L.1    de Vries, M.C.2    van Delden, J.J.M.3
  • 22
    • 70249122789 scopus 로고    scopus 로고
    • Pediatric biobanks: approaching informed consent for continuing research after children grow up
    • 19595370
    • Goldenberg AJ, Hull SC, Botkin JR, Wilfond BS, Pediatric biobanks: approaching informed consent for continuing research after children grow up. J Pediatr. 2009;155: 578–583. doi: 10.1016/j.jpeds.2009.04.03419595370
    • (2009) J Pediatr , vol.155 , pp. 578-583
    • Goldenberg, A.J.1    Hull, S.C.2    Botkin, J.R.3    Wilfond, B.S.4
  • 23
    • 84872459720 scopus 로고    scopus 로고
    • Identifying personal genomes by surname inference
    • 23329047
    • Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y, Identifying personal genomes by surname inference. Science. 2013;339: 321–324. doi: 10.1126/science.122956623329047
    • (2013) Science , vol.339 , pp. 321-324
    • Gymrek, M.1    McGuire, A.L.2    Golan, D.3    Halperin, E.4    Erlich, Y.5
  • 25
    • 77951102340 scopus 로고    scopus 로고
    • Genetic research with stored biological materials: ethics and practice
    • .;:–
    • Wolf LE, Bouley TA, McCulloch CE, Genetic research with stored biological materials: ethics and practice. IRB. 2010;32: 7–18.
    • (2010) IRB , vol.32 , pp. 7-18
    • Wolf, L.E.1    Bouley, T.A.2    McCulloch, C.E.3
  • 26
    • 68949205798 scopus 로고    scopus 로고
    • Children and population biobanks
    • .;:–
    • Gurwitz D, Fortier I, Lunshof JE, Knoppers BM, Children and population biobanks. Science. 2009;325: 818–819. doi: 10.1126/science.1173284
    • (2009) Science , vol.325 , pp. 818-819
    • Gurwitz, D.1    Fortier, I.2    Lunshof, J.E.3    Knoppers, B.M.4
  • 27
    • 84874346218 scopus 로고    scopus 로고
    • Data re-identification: protect the children
    • .;:
    • Gurwitz D, Data re-identification: protect the children. Science. 2013;339: 1033.
    • (2013) Science , vol.339 , pp. 1033
    • Gurwitz, D.1
  • 28
    • 70449359800 scopus 로고    scopus 로고
    • Biobanks: oversight offers protection
    • .;:–
    • Hens K, Wright J, Dierickx K, Biobanks: oversight offers protection. Science. 2009;326: 798–799.
    • (2009) Science , vol.326 , pp. 798-799
    • Hens, K.1    Wright, J.2    Dierickx, K.3
  • 29
    • 70449369495 scopus 로고    scopus 로고
    • Biobanks: questioning distinctions
    • .;:
    • Hansson MG, Maschke KJ, Biobanks: questioning distinctions. Science. 2009;326: 797.
    • (2009) Science , vol.326 , pp. 797
    • Hansson, M.G.1    Maschke, K.J.2
  • 30
    • 70449393688 scopus 로고    scopus 로고
    • Biobanks: too long to wait for consent
    • .;:
    • Brothers KB, Clayton EW, Biobanks: too long to wait for consent. Science. 2009;326: 798.
    • (2009) Science , vol.326 , pp. 798
    • Brothers, K.B.1    Clayton, E.W.2
  • 31
    • 79951802578 scopus 로고    scopus 로고
    • . In:.:;. pp.–
    • Árnason V, Solbakk JH, Holm S, Hofmann B, Scientific citizenship, benefit, and protection in population-based research. In: The Ethics of Research Biobanking. Dordrecht Heidelberg London New York: Springer Science + Buiness Media, LLC; 2009. pp. 131–141.
    • (2009) The Ethics of Research Biobanking , pp. 131-141
    • Árnason, V.1    Solbakk, J.H.2    Holm, S.3    Hofmann, B.4
  • 32
    • 80054070499 scopus 로고    scopus 로고
    • Feasibility of neonatal dried blood spot retrieval amid evolving state policies (2009–2010): a Children’s Oncology Group study
    • 21980944, ..;:–
    • Linabery AM, Slater ME, Spector LG, Olshan AF, Stork SK, Roesler MA, et al. Feasibility of neonatal dried blood spot retrieval amid evolving state policies (2009–2010): a Children’s Oncology Group study. Paediatr Perinat Epidemiol. 2011;25: 549–558. doi: 10.1111/j.1365-3016.2011.01228.x21980944
    • (2011) Paediatr Perinat Epidemiol , vol.25 , pp. 549-558
    • Linabery, A.M.1    Slater, M.E.2    Spector, L.G.3    Olshan, A.F.4    Stork, S.K.5    Roesler, M.A.6
  • 33
    • 82255174984 scopus 로고    scopus 로고
    • Using human tissue: when do we need consent?
    • .;:–
    • Parker L, Using human tissue: when do we need consent?J Med Ethics. 2011;37: 759–761. doi: 10.1136/medethics-2011-100043
    • (2011) J Med Ethics , vol.37 , pp. 759-761
    • Parker, L.1
  • 34
    • 29244477168 scopus 로고    scopus 로고
    • Informed consent and the biobanking of materials from children
    • .;:–
    • Holm S, Informed consent and the biobanking of materials from children. Genomics, Society and Policy. 2005;1: 16–26.
    • (2005) Genomics, Society and Policy , vol.1 , pp. 16-26
    • Holm, S.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.