메뉴 건너뛰기




Volumn 62, Issue 8, 2015, Pages 1374-1380

Overcoming challenges to meaningful informed consent for whole genome sequencing in pediatric cancer research

Author keywords

Informed consent; Pediatric oncology; Whole genome sequencing

Indexed keywords

ANXIETY; ARTICLE; ATTITUDE TO HEALTH; AWARENESS; CANCER RESEARCH; CANCER SURGERY; CHILDHOOD CANCER; CLINICAL ARTICLE; CONTENT ANALYSIS; CONTROL GROUP; EXPECTATION; FEAR; FEMALE; GENE SEQUENCE; GENETIC SCREENING; GENETIC TRANSCRIPTION; HEREDITY; HUMAN; INFORMATION PROCESSING; INFORMED CONSENT; KNOWLEDGE; LEGAL GUARDIAN; MALE; MOTIVATION; PARENT; PARENTAL BEHAVIOR; PRIORITY JOURNAL; PRIVACY; QUALITATIVE RESEARCH; SEMI STRUCTURED INTERVIEW; TUMOR BIOPSY; CHROMOSOME MAP; DECISION MAKING; DNA SEQUENCE; EDUCATION; GENETICS; HUMAN GENOME; INCIDENTAL FINDING; MEDICAL RESEARCH; PARENTAL CONSENT; PATIENT SELECTION; PSYCHOLOGY;

EID: 84932198528     PISSN: 15455009     EISSN: 15455017     Source Type: Journal    
DOI: 10.1002/pbc.25520     Document Type: Article
Times cited : (30)

References (27)
  • 3
    • 84857855694 scopus 로고    scopus 로고
    • Disclosing pathogenic genetic variants to research participants: Quantifying an emerging ethical responsibility
    • Cassa CA, Savage SK, Taylor PL, Green RC, McGuire AL, Mandl KD. Disclosing pathogenic genetic variants to research participants: Quantifying an emerging ethical responsibility. Genome Res 2012; 22:421-428.
    • (2012) Genome Res , vol.22 , pp. 421-428
    • Cassa, C.A.1    Savage, S.K.2    Taylor, P.L.3    Green, R.C.4    McGuire, A.L.5    Mandl, K.D.6
  • 5
    • 38549085235 scopus 로고    scopus 로고
    • Research ethics and the challenge of whole-genome sequencing
    • McGuire AL, Caulfield T, Cho MK. Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet 2008; 9:152-156.
    • (2008) Nat Rev Genet , vol.9 , pp. 152-156
    • McGuire, A.L.1    Caulfield, T.2    Cho, M.K.3
  • 6
    • 84874599543 scopus 로고    scopus 로고
    • Disclosure of incidental findings from next-generation sequencing in pediatric genomic research
    • Abdul- Karim R, Berkman BE, Wendler D, Rid A, Khan J, Badgett T, Hull SC. Disclosure of incidental findings from next-generation sequencing in pediatric genomic research. Pediatrics 2013; 131:564-571.
    • (2013) Pediatrics , vol.131 , pp. 564-571
    • Abdul-Karim, R.1    Berkman, B.E.2    Wendler, D.3    Rid, A.4    Khan, J.5    Badgett, T.6    Hull, S.C.7
  • 9
    • 84884587533 scopus 로고    scopus 로고
    • Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and process
    • Ayuso C, Millan JM, Mancheno M, Dal-Re R. Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and process. Eur J Hum Genet 2013; 21:1054-1059.
    • (2013) Eur J Hum Genet , vol.21 , pp. 1054-1059
    • Ayuso, C.1    Millan, J.M.2    Mancheno, M.3    Dal-Re, R.4
  • 10
    • 77956396559 scopus 로고    scopus 로고
    • Tailoring the process of informed consent in genetic and genomic research
    • Rotimi C, Marshall P. Tailoring the process of informed consent in genetic and genomic research. Genome Med 2010; 2:e20.
    • (2010) Genome Med , vol.2
    • Rotimi, C.1    Marshall, P.2
  • 11
    • 81955167410 scopus 로고    scopus 로고
    • Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research
    • Tabor HK, Berkman BE, Hull SC, Bamshad MJ. Genomics really gets personal: How exome and whole genome sequencing challenge the ethical framework of human genetics research. Am J Med Genet 2011; 155:2916-2924.
    • (2011) Am J Med Genet , vol.155 , pp. 2916-2924
    • Tabor, H.K.1    Berkman, B.E.2    Hull, S.C.3    Bamshad, M.J.4
  • 13
    • 0033629555 scopus 로고    scopus 로고
    • Does knowledge make a difference? The association between knowledge about genes and attitudes toward gene tests
    • Jallinoja P, Aro A. Does knowledge make a difference? The association between knowledge about genes and attitudes toward gene tests. J Health Commun 2000; 5:29-39.
    • (2000) J Health Commun , vol.5 , pp. 29-39
    • Jallinoja, P.1    Aro, A.2
  • 16
    • 1242331407 scopus 로고    scopus 로고
    • Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness
    • Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24:105-112.
    • (2004) Nurse Educ Today , vol.24 , pp. 105-112
    • Graneheim, U.H.1    Lundman, B.2
  • 18
    • 33846080089 scopus 로고    scopus 로고
    • Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease
    • Morren M, Rijken M, Baanders AN, Bensing J. Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease. Patient Educ Couns 2007; 65:197-204.
    • (2007) Patient Educ Couns , vol.65 , pp. 197-204
    • Morren, M.1    Rijken, M.2    Baanders, A.N.3    Bensing, J.4
  • 20
    • 81555203460 scopus 로고    scopus 로고
    • Motivators for participation in a whole-genome sequencing study: Implications for translational genomics research
    • Facio FM, Brooks S, Loewenstein J, Green S, Biesecker LG, Biesecker BB. Motivators for participation in a whole-genome sequencing study: Implications for translational genomics research. Eur J Hum Genet 2011; 19:1213-1217.
    • (2011) Eur J Hum Genet , vol.19 , pp. 1213-1217
    • Facio, F.M.1    Brooks, S.2    Loewenstein, J.3    Green, S.4    Biesecker, L.G.5    Biesecker, B.B.6
  • 21
    • 84904261899 scopus 로고    scopus 로고
    • Stakeholders' opinions on the implementation of pediatric whole exome sequencing: Implications for informed consent
    • Levenseller BL, Soucier DJ, Miller VA, Harris D, Conway L, Bernhardt BA. Stakeholders' opinions on the implementation of pediatric whole exome sequencing: Implications for informed consent. J Genet Counsel 2014; 23:552-565.
    • (2014) J Genet Counsel , vol.23 , pp. 552-565
    • Levenseller, B.L.1    Soucier, D.J.2    Miller, V.A.3    Harris, D.4    Conway, L.5    Bernhardt, B.A.6
  • 22
    • 84892483688 scopus 로고    scopus 로고
    • Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children
    • Sapp JC, Dong D, Stark C, Ivey LE, Hooker G, Biesecker LG, Biesecker BB. Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children. Clin Genet 2014; 85:120-126.
    • (2014) Clin Genet , vol.85 , pp. 120-126
    • Sapp, J.C.1    Dong, D.2    Stark, C.3    Ivey, L.E.4    Hooker, G.5    Biesecker, L.G.6    Biesecker, B.B.7
  • 23
    • 84861225247 scopus 로고    scopus 로고
    • Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms
    • Tabor HK, Stock J, Brazg T, McMillin MJ, Dent KM, Yu J-H, Shendure J, Bamshad MJ. Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms. Am J Med Genet A 2012; 158A:1310-1319.
    • (2012) Am J Med Genet A , vol.158A , pp. 1310-1319
    • Tabor, H.K.1    Stock, J.2    Brazg, T.3    McMillin, M.J.4    Dent, K.M.5    Yu, J.-H.6    Shendure, J.7    Bamshad, M.J.8
  • 25
    • 84866491890 scopus 로고    scopus 로고
    • "I want to know what's in Pandora's box": Comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing
    • Townsend A, Adam S, Birch PH, Lohn Z, Rousseau F, Friedman JM. "I want to know what's in Pandora's box": Comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing. Am J Med Genet A 2012; 158A:2519-2525.
    • (2012) Am J Med Genet A , vol.158A , pp. 2519-2525
    • Townsend, A.1    Adam, S.2    Birch, P.H.3    Lohn, Z.4    Rousseau, F.5    Friedman, J.M.6
  • 26
    • 84880421555 scopus 로고    scopus 로고
    • Return of secondary genomic findings vs patient autonomy: Implications for medical care
    • Klitzman R, Appelbaum PS, Chung W. Return of secondary genomic findings vs patient autonomy: Implications for medical care. JAMA 2013; 310:369-370.
    • (2013) JAMA , vol.310 , pp. 369-370
    • Klitzman, R.1    Appelbaum, P.S.2    Chung, W.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.