메뉴 건너뛰기




Volumn 13, Issue 4, 2011, Pages 305-313

Research use of leftover newborn bloodspots: Attitudes of canadian geneticists regarding storage and informed consent requirements

Author keywords

biobank; DNA banking; ethics; genetic research; geneticists; genotype; molecular research; newborn screening

Indexed keywords

ADULT; ANXIETY; ARTICLE; BLOOD STORAGE; CANADA; FAMILY ATTITUDE; FEMALE; GENETICIST; HUMAN; INFORMATION DISSEMINATION; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MALE; MEDICAL RESEARCH; NEWBORN BLOODSPOT; NEWBORN SCREENING; PHYSICIAN; PHYSICIAN ATTITUDE; RISK FACTOR; STIGMA;

EID: 79955030148     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e3181f69da0     Document Type: Article
Times cited : (8)

References (46)
  • 1
    • 75449123150 scopus 로고
    • A simple phenylalanine method for detecting phenylk-etonuria in large populations of newborn infants
    • Guthrie R, Susi A. A simple phenylalanine method for detecting phenylk-etonuria in large populations of newborn infants. Pediatrics 1963;32:338-343.
    • (1963) Pediatrics , vol.32 , pp. 338-343
    • Guthrie, R.1    Susi, A.2
  • 3
    • 33744786549 scopus 로고    scopus 로고
    • Status of newborn screening programs in the United States
    • DOI 10.1542/peds.2005-2633C
    • Therrell BL, Johnson A, Williams D. Status of newborn screening programs in the United States. Pediatrics 2006;117:S212-S252. (Pubitemid 46071311)
    • (2006) Pediatrics , vol.117 , Issue.5
    • Therrell, B.L.1    Johnson, A.2    Williams, D.3
  • 5
    • 33646852801 scopus 로고    scopus 로고
    • Storage and use of residual dried blood spots from state newborn screening programs
    • DOI 10.1016/j.jpeds.2005.12.053, PII S0022347605012400
    • Olney RS, Moore CA, Ojodu JA, Lindegren ML, Hannon WH. Storage and use of residual dried blood spots from state newborn screening programs. J Pediatr 2006;148:618-622. (Pubitemid 43776916)
    • (2006) Journal of Pediatrics , vol.148 , Issue.5 , pp. 618-622
    • Olney, R.S.1    Moore, C.A.2    Ojodu, J.A.3    Lindegren, M.L.4    Hannon, W.H.5
  • 6
    • 67749098061 scopus 로고    scopus 로고
    • Genome-wide scans using archived neonatal dried blood spot samples
    • Hollegaard MV, Grauholm J, Borglum A, et al. Genome-wide scans using archived neonatal dried blood spot samples. BMC Genomics 2009;10:297.
    • (2009) BMC Genomics , vol.10 , pp. 297
    • Hollegaard, M.V.1    Grauholm, J.2    Borglum, A.3
  • 7
    • 70350455270 scopus 로고    scopus 로고
    • Geno-typing whole-genome-amplified DNA from 3- to 25-year-old neonatal dried blood spot samples with reference to fresh genomic DNA
    • Hollegaard MV, Thorsen P, Norgaard-Pedersen B, Hougaard DM. Geno-typing whole-genome-amplified DNA from 3- to 25-year-old neonatal dried blood spot samples with reference to fresh genomic DNA. Electrophoresis 2009;30:2532-2535.
    • (2009) Electrophoresis , vol.30 , pp. 2532-2535
    • Hollegaard, M.V.1    Thorsen, P.2    Norgaard-Pedersen, B.3    Hougaard, D.M.4
  • 8
    • 26944443539 scopus 로고    scopus 로고
    • Canada lags on newborn screening
    • Eggertson L. Canada lags on newborn screening. CMAJ 2005;173:23.
    • (2005) CMAJ , vol.173 , pp. 23
    • Eggertson, L.1
  • 10
    • 85081447937 scopus 로고    scopus 로고
    • National Newborn Screening and Genetics Resource Center, 2006 Accessed September 20, 2010
    • National Newborn Screening and Genetics Resource Center, 2006. Available at: http://genes-r-us.uthscsa.edu/CA-nbsdisorders.pdf. Accessed September 20, 2010.
  • 11
    • 70349260432 scopus 로고    scopus 로고
    • Variability in the storage and use of newborn dried bloodspots in Canada: Is it time for National standards?
    • Avard DV, Vallance H, Greenberg C, Laberge C, Kharaboyan L, Plant M. Variability in the storage and use of newborn dried bloodspots in Canada: is it time for National standards? Genomics Soc Policy 2006;2: 80-95.
    • (2006) Genomics Soc Policy , vol.2 , pp. 80-95
    • Avard, D.V.1    Vallance, H.2    Greenberg, C.3    Laberge, C.4    Kharaboyan, L.5    Plant, M.6
  • 12
    • 77954655906 scopus 로고    scopus 로고
    • The Havasupai Indian tribe case-lessons for research involving stored biologic samples
    • Mello MM, Wolf LE. The Havasupai Indian tribe case-lessons for research involving stored biologic samples. N Engl J Med 2010;363:204-207.
    • (2010) N Engl J Med , vol.363 , pp. 204-207
    • Mello, M.M.1    Wolf, L.E.2
  • 13
    • 85081451080 scopus 로고    scopus 로고
    • Accessed June 1, 2010
    • Texas' Newborn Screening Program. Available at: http://www.dshs.state.tx. us/legislative/NBS-presentation-051710.ppt#256,1. Accessed June 1, 2010.
    • Texas' Newborn Screening Program
  • 14
    • 33344475590 scopus 로고    scopus 로고
    • Should donors be allowed to give broad consent to future biobank research?
    • DOI 10.1016/S1470-2045(06)70618-0, PII S1470204506706180
    • Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol 2006;7:266-269. (Pubitemid 43286456)
    • (2006) Lancet Oncology , vol.7 , Issue.3 , pp. 266-269
    • Hansson, M.G.1    Dillner, J.2    Bartram, C.R.3    Carlson, J.A.4    Helgesson, G.5
  • 15
    • 0347750518 scopus 로고    scopus 로고
    • DNA databanks and consent: A suggested policy option involving an authorization model
    • Caulfield T, Upshur RE, Daar A. DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med Ethics 2003;4:E1.
    • (2003) BMC Med Ethics , vol.4
    • Caulfield, T.1    Upshur, R.E.2    Daar, A.3
  • 17
    • 17944370285 scopus 로고    scopus 로고
    • Technology transfer in BioBanking: Credits, debits, and population health futures
    • Malinowski MJ. Technology Transfer in biobanking: credits, debits, and population health futures. J Law Med Ethics 2005;33:54-69. (Pubitemid 40598045)
    • (2005) Journal of Law, Medicine and Ethics , vol.33 , Issue.1 , pp. 54-69
    • Malinowski, M.J.1
  • 19
    • 44949149305 scopus 로고    scopus 로고
    • Incidental findings in pediatric research
    • 213
    • Wilfond BS, Carpenter KJ. Incidental findings in pediatric research. J Law Med Ethics 2008;36:332-340; 213.
    • (2008) J Law Med Ethics , vol.36 , pp. 332-340
    • Wilfond, B.S.1    Carpenter, K.J.2
  • 20
    • 44949211505 scopus 로고    scopus 로고
    • Managing incidental findings in human subjects research: Analysis and recommendations
    • 211
    • Wolf SM, Lawrenz FP, Nelson CA, et al. Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics 2008;36:219-248; 211.
    • (2008) J Law Med Ethics , vol.36 , pp. 219-248
    • Wolf, S.M.1    Lawrenz, F.P.2    Nelson, C.A.3
  • 21
    • 33750631748 scopus 로고    scopus 로고
    • Disclosing individual genetic results to research participants
    • DOI 10.1080/15265160600934772, PII K2052P45R4645537
    • Ravitsky V, Wilfond BS. Disclosing individual genetic results to research participants. Am J Bioeth 2006;6:8-17. (Pubitemid 44691474)
    • (2006) American Journal of Bioethics , vol.6 , Issue.6 , pp. 8-17
    • Ravitsky, V.1    Wilfond, B.S.2
  • 22
    • 17844395950 scopus 로고    scopus 로고
    • Accountability in population biobanking: Comparative approaches
    • Deschenes M, Sallee C. Accountability in population biobanking: comparative approaches. J Law Med Ethics 2005;33:40-53. (Pubitemid 40591969)
    • (2005) Journal of Law, Medicine and Ethics , vol.33 , Issue.1 , pp. 40-53
    • Deschenes, M.1    Sallee, C.2
  • 23
    • 0038574232 scopus 로고    scopus 로고
    • Accessed October 10, 2006
    • ACT on Biobanks no. 110/2000, 2000. Available at: http:// ministryofhealth. is/laws-and-regulations/nr/31. Accessed October 10, 2006.
    • (2000) ACT on Biobanks No. 110/2000
  • 24
    • 33745596413 scopus 로고    scopus 로고
    • Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework
    • DOI 10.1038/sj.embor.7400740, PII 7400740
    • Elger BS, Caplan AL. Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework. EMBO Rep 2006;7:661-666. (Pubitemid 43986258)
    • (2006) EMBO Reports , vol.7 , Issue.7 , pp. 661-666
    • Elger, B.S.1    Caplan, A.L.2
  • 25
    • 31344467157 scopus 로고    scopus 로고
    • Do we need a uniform regulatory system for biobanks across Europe?
    • DOI 10.1038/sj.ejhg.5201530, PII 5201530
    • Kaye J. Do we need a uniform regulatory system for biobanks across Europe? Eur J Hum Genet 2006;14:245-248. (Pubitemid 43135869)
    • (2006) European Journal of Human Genetics , vol.14 , Issue.2 , pp. 245-248
    • Kaye, J.1
  • 26
    • 23944437161 scopus 로고    scopus 로고
    • Lessons from european population genetic databases: Comparing the law in Estonia, Iceland, Sweden and the United Kingdom
    • DOI 10.1163/1571809054640659
    • Gibbons SM, Helgason HH, Kaye J, Nomper A, Wendel L. Lessons from European population genetic databases: comparing the law in Estonia, Iceland, Sweden and the United Kingdom. Eur J Health Law 2005;12: 103-133. (Pubitemid 41185779)
    • (2005) European Journal of Health Law , vol.12 , Issue.2 , pp. 103-133
    • Gibbons, S.M.C.1    Helgason, H.H.2    Kaye, J.3    Nomper, A.4    Wendel, L.5
  • 27
    • 17944366421 scopus 로고    scopus 로고
    • Expanding the ethical analysis of biobanks
    • Rothstein MA. Expanding the ethical analysis of biobanks. J Law Med Ethics 2005;33:89-101. (Pubitemid 40598047)
    • (2005) Journal of Law, Medicine and Ethics , vol.33 , Issue.1 , pp. 89-101
    • Rothstein, M.A.1
  • 28
    • 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
  • 29
    • 0036516043 scopus 로고    scopus 로고
    • The role of IRBs in research involving commercial biobanks
    • Rothstein MA. The role of IRBs in research involving commercial biobanks. J Law Med Ethics 2002;30:105-108.
    • (2002) J Law Med Ethics , vol.30 , pp. 105-108
    • Rothstein, M.A.1
  • 32
    • 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. Genetic research on stored tissue samples from minors: a systematic review of the ethical literature. Am J Med Genet A 2009;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
  • 33
    • 0032574154 scopus 로고    scopus 로고
    • The new genetics: Psychological responses to genetic testing
    • Marteau TM, Croyle RT. The new genetics. Psychological responses to genetic testing. BMJ 1998;316:693-696. (Pubitemid 28121038)
    • (1998) British Medical Journal , vol.316 , Issue.7132 , pp. 693-696
    • Marteau, T.M.1    Croyle, R.T.2
  • 34
    • 5444242007 scopus 로고    scopus 로고
    • Genetic research & communal narratives
    • Davis DS. Genetic research & communal narratives. Hastings Cent Rep 2004;34:40-49.
    • (2004) Hastings Cent Rep , vol.34 , pp. 40-49
    • Davis, D.S.1
  • 35
    • 33644930832 scopus 로고    scopus 로고
    • One-time general consent for research on biological samples
    • Wendler D. One-time general consent for research on biological samples. BMJ 2006;332:544-547. (Pubitemid 44364375)
    • (2006) British Medical Journal , vol.332 , Issue.7540 , pp. 544-547
    • Wendler, D.1
  • 36
    • 77954626124 scopus 로고    scopus 로고
    • Indian tribe wins fight to limit research of its DNA
    • Harmon A. Indian tribe wins fight to limit research of its DNA. NY Times, 2010.
    • (2010) NY Times
    • Harmon, A.1
  • 37
    • 84908880286 scopus 로고    scopus 로고
    • Native Americans wary of genetic research
    • After Havasupai litigation
    • After Havasupai litigation, Native Americans wary of genetic research. Am J Med Genet 2010;152A.
    • (2010) Am J Med Genet
  • 38
    • 59649110565 scopus 로고    scopus 로고
    • Informed consent in biobank research: A deliberative approach to the debate
    • Secko DM, Preto N, Niemeyer S, Burgess MM. Informed consent in biobank research: a deliberative approach to the debate. Soc Sci Med 2009;68:781-789.
    • (2009) Soc Sci Med , vol.68 , pp. 781-789
    • Secko, D.M.1    Preto, N.2    Niemeyer, S.3    Burgess, M.M.4
  • 39
    • 0042420653 scopus 로고    scopus 로고
    • Newborn urine screening programme in the province of Quebec: An update of 30 years' experience
    • DOI 10.1023/A:1025115405074
    • Auray-Blais C, Giguere R, Lemieux B. Newborn urine screening programme in the province of Quebec: an update of 30 years' experience. J Inherit Metab Dis 2003;26:393-402. (Pubitemid 37045447)
    • (2003) Journal of Inherited Metabolic Disease , vol.26 , Issue.4 , pp. 393-402
    • Auray-Blais, C.1    Giguere, R.2    Lemieux, B.3
  • 40
    • 33744955936 scopus 로고    scopus 로고
    • Public knowledge and public trust
    • DOI 10.1159/000092658
    • Cunningham-Burley S. Public knowledge and public trust. Community Genet 2006;9:204-210. (Pubitemid 43854186)
    • (2006) Community Genetics , vol.9 , Issue.3 , pp. 204-210
    • Cunningham-Burley, S.1
  • 41
    • 33744950995 scopus 로고    scopus 로고
    • Public engagement as a means of restoring public trust in science - Hitting the notes, but missing the music?
    • DOI 10.1159/000092659
    • Wynne B. Public engagement as a means of restoring public trust in science-hitting the notes, but missing the music? Community Genet 2006; 9:211-220. (Pubitemid 43854187)
    • (2006) Community Genetics , vol.9 , Issue.3 , pp. 211-220
    • Wynne, B.1
  • 42
    • 59849096072 scopus 로고    scopus 로고
    • How to obtain excellent response rates when surveying physicians
    • Thorpe C, Ryan B, McLean SL, et al. How to obtain excellent response rates when surveying physicians. Fam Pract 2009;26:65-68.
    • (2009) Fam Pract , vol.26 , pp. 65-68
    • Thorpe, C.1    Ryan, B.2    McLean, S.L.3
  • 43
    • 56049096780 scopus 로고    scopus 로고
    • Effects of various methodologic strategies: Survey response rates among Canadian physicians and physicians-in-training
    • Grava-Gubins I, Scott S. Effects of various methodologic strategies: survey response rates among Canadian physicians and physicians-in-training. Can Fam Physician 2008;54:1424-1430.
    • (2008) Can Fam Physician , vol.54 , pp. 1424-1430
    • Grava-Gubins, I.1    Scott, S.2
  • 45
    • 35649025867 scopus 로고    scopus 로고
    • Methodologies for improving response rates in surveys of physicians: A systematic review
    • VanGeest JB, Johnson TP, Welch VL. Methodologies for improving response rates in surveys of physicians: a systematic review. Eval Health Prof 2007;30:303-321.
    • (2007) Eval Health Prof , vol.30 , pp. 303-321
    • Vangeest, J.B.1    Johnson, T.P.2    Welch, V.L.3
  • 46
    • 46649093136 scopus 로고    scopus 로고
    • Comparing response rates from web and mail surveys: A meta-analysis
    • Shih TH, Fan X. Comparing response rates from web and mail surveys: a meta-analysis. Field Methods 2008;20:249-271.
    • (2008) Field Methods , vol.20 , pp. 249-271
    • Shih, T.H.1    Fan, X.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.