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Volumn 6, Issue 4, 2011, Pages 53-67

Informed consent and genomic incidental findings: IRB chair perspectives

Author keywords

Genomic incidental findings; Informed consent; Institutional review board

Indexed keywords

ATTITUDE TO HEALTH; ETHICS; GENETIC ASSOCIATION; GENETICS; HUMAN; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; INTERVIEW; PROFESSIONAL STANDARD; REVIEW; RISK;

EID: 84862911210     PISSN: 15562646     EISSN: 15562654     Source Type: Journal    
DOI: 10.1525/jer.2011.6.4.53     Document Type: Review
Times cited : (39)

References (48)
  • 1
    • 79954508843 scopus 로고    scopus 로고
    • A systematic review of the empirical literature evaluating IRBs: What we know and what we still need to learn
    • Abbott, L. & Grady, C. (2011). A systematic review of the empirical literature evaluating IRBs: What we know and what we still need to learn. Journal of Empirical Research on Human Research Ethics, 6(1), 3-19.
    • (2011) Journal of Empirical Research on Human Research Ethics , vol.6 , Issue.1 , pp. 3-19
    • Abbott, L.1    Grady, C.2
  • 2
    • 79956336680 scopus 로고    scopus 로고
    • Bad news about bad news: The disclosure of risks to insurability in research consent processes
    • Apold, V S. & Downie, J. (2011). Bad news about bad news: The disclosure of risks to insurability in research consent processes. Accountability in Research, 18(1), 31-44.
    • (2011) Accountability in Research , vol.18 , Issue.1 , pp. 31-44
    • Apold, V.S.1    Downie, J.2
  • 3
    • 79959276553 scopus 로고    scopus 로고
    • Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time
    • Berg, J. S., Khoury, M. J., & Evans, J. P. (2011). Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time. Genetics in Medicine, 13(6), 499-504.
    • (2011) Genetics in Medicine , vol.13 , Issue.6 , pp. 499-504
    • Berg, J.S.1    Khoury, M.J.2    Evans, J.P.3
  • 4
    • 77955628265 scopus 로고    scopus 로고
    • Offering individual genetic research results: Context matters
    • Beskow, L. M. & Burke, W. (2010). Offering individual genetic research results: Context matters. Science Translational Medicine, 2(38), 1-5.
    • (2010) Science Translational Medicine , vol.2 , Issue.38 , pp. 1-5
    • Beskow, L.M.1    Burke, W.2
  • 5
    • 77957228179 scopus 로고    scopus 로고
    • Simplifying informed consent for biorepositories: Stakeholder perspectives
    • Beskow, L. M., Friedman, J. Y., Hardy, N. C., Lin, L., & Weinfurt, K. P. (2010). Simplifying informed consent for biorepositories: Stakeholder perspectives. Genetics in Medicine, 12(9), 567-572.
    • (2010) Genetics in Medicine , vol.12 , Issue.9 , pp. 567-572
    • Beskow, L.M.1    Friedman, J.Y.2    Hardy, N.C.3    Lin, L.4    Weinfurt, K.P.5
  • 9
    • 44949095629 scopus 로고    scopus 로고
    • Understanding incidental findings in the context of genetics and genomics
    • Cho, M. K. (2008). Understanding incidental findings in the context of genetics and genomics. Journal of Law, Medicine & Ethics, 36(2), 280-285.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.2 , pp. 280-285
    • Cho, M.K.1
  • 11
    • 79951507916 scopus 로고    scopus 로고
    • Human genome 10th anniversary: What would you do?
    • Couzin-Frankel, J. (2011). Human genome 10th anniversary: What would you do? Science, 331(6018), 662-665.
    • (2011) Science , vol.331 , Issue.6018 , pp. 662-665
    • Couzin-Frankel, J.1
  • 13
    • 67650391208 scopus 로고    scopus 로고
    • Disclosure of research results from can-cer genomic studies: State of the science
    • Dressler, L. G. (2009). Disclosure of research results from can-cer genomic studies: State of the science. Clinical Cancer Research, 15(13), 4270-4276.
    • (2009) Clinical Cancer Research , vol.15 , Issue.13 , pp. 4270-4276
    • Dressler, L.G.1
  • 14
    • 79951863517 scopus 로고    scopus 로고
    • Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from a National Heart, Lung, and Blood Institute working group
    • Fabsitz, R. R., McGuire, A., Sharp, R. R., Puggal, M., Beskow, L. M., Biesecker, L. G. et al. (2010). Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from a National Heart, Lung, and Blood Institute working group. Circulatory and Cardiovascular Genetics, 3(6), 574-580.
    • (2010) Circulatory and Cardiovascular Genetics , vol.3 , Issue.6 , pp. 574-580
    • Fabsitz, R.R.1    McGuire, A.2    Sharp, R.R.3    Puggal, M.4    Beskow, L.M.5    Biesecker, L.G.6
  • 15
    • 48949119110 scopus 로고    scopus 로고
    • Taking social relationships seriously: Lessons learned from the informed consent practices of a vaccine trial on the Kenyan Coast
    • DOI 10.1016/j.socscimed.2008.02.003, PII S0277953608000890
    • Gikonyo, C., Bejon, P., Marsh, V., & Molyneux, S. (2008). Taking social relationships seriously: Lessons learned from the informed consent practices of a vaccine trial on the Kenyan Coast. Social Science & Medicine, 67(5), 708-720. (Pubitemid 352004086)
    • (2008) Social Science and Medicine , vol.67 , Issue.5 , pp. 708-720
    • Gikonyo, C.1    Bejon, P.2    Marsh, V.3    Molyneux, S.4
  • 18
    • 27844518793 scopus 로고    scopus 로고
    • Three approaches to qualitative content analysis
    • DOI 10.1177/1049732305276687
    • Hsieh, H. F. & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288. (Pubitemid 41645161)
    • (2005) Qualitative Health Research , vol.15 , Issue.9 , pp. 1277-1288
    • Hsieh, H.-F.1    Shannon, S.E.2
  • 19
    • 0035944839 scopus 로고    scopus 로고
    • Quality of informed consent in cancer clinical trials: A cross-sectional survey
    • DOI 10.1016/S0140-6736(01)06805-2
    • Joffe, S., Cook, E. F., Cleary, P. D., Clark, J. W., & Weeks, J. C. (2001). Quality of informed consent in cancer clinical trials: A cross-sectional survey. Lancet, 358(9295), 1772-1777. (Pubitemid 33153003)
    • (2001) Lancet , vol.358 , Issue.9295 , pp. 1772-1777
    • Joffe, S.1    Cook, E.F.2    Cleary, P.D.3    Clark, J.W.4    Weeks, J.C.5
  • 20
    • 77953958784 scopus 로고    scopus 로고
    • CLIA-tested genetic variants on commercial SNP arrays: Potential for incidental findings in genome-wide association studies
    • Johnson, A. D., Bhimavarapu, A., Benjamin, E. J., Fox, C., Levy, D., Jarvik, G. P. et al. (2010). CLIA-tested genetic variants on commercial SNP arrays: Potential for incidental findings in genome-wide association studies. Genetics in Medicine, 12(6), 355-363.
    • (2010) Genetics in Medicine , vol.12 , Issue.6 , pp. 355-363
    • Johnson, A.D.1    Bhimavarapu, A.2    Benjamin, E.J.3    Fox, C.4    Levy, D.5    Jarvik, G.P.6
  • 21
    • 60549083544 scopus 로고    scopus 로고
    • An open access database of genome-wide association results
    • Johnson, A. D. & O'Donnell, C. J. (2009). An open access database of genome-wide association results. BMC Medical Genetics, 10(6).
    • (2009) BMC Medical Genetics , vol.10 , Issue.6
    • Johnson, A.D.1    O'Donnell, C.J.2
  • 22
    • 44949215930 scopus 로고    scopus 로고
    • Institutional review board approaches to the incidental findings problem
    • Keane, M. A. (2008). Institutional review board approaches to the incidental findings problem. Journal of Law, Medicine & Ethics, 36(2), 352-355.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.2 , pp. 352-355
    • Keane, M.A.1
  • 23
    • 40149099045 scopus 로고    scopus 로고
    • Offering results to research subjects: U.S. institutional r eview board policy
    • Kozanczyn, C., Collins, K., & Fernandez, C. V. (2007). Offering results to research subjects: U.S. institutional r eview board policy. Accountability in Research, 14(4), 255-267.
    • (2007) Accountability in Research , vol.14 , Issue.4 , pp. 255-267
    • Kozanczyn, C.1    Collins, K.2    Fernandez, C.V.3
  • 28
    • 44949089705 scopus 로고    scopus 로고
    • Incidental findings in human subjects research: What do investigators owe research participants?
    • Miller, F. G., Mello, M. M., & Joffe, S. (2008). Incidental findings in human subjects research: What do investigators owe research participants? Journal of Law, Medicine & Ethics, 36(2), 271-279.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.2 , pp. 271-279
    • Miller, F.G.1    Mello, M.M.2    Joffe, S.3
  • 30
    • 84862958462 scopus 로고    scopus 로고
    • Office of Biorepositiories and Biospecimen Research. Retrieved from
    • Office of Biorepositiories and Biospecimen Research. (2010a). Workshop on release of research results to participants in biospecimen studies. Retrieved from http://biospecimens.cancer.gov/global/pdfs/NCI-Return-Research-Results- Summary-Final-508.pdf
    • (2010) Workshop on Release of Research Results to Participants in Biospecimen Studies
  • 31
    • 84864250382 scopus 로고    scopus 로고
    • Office of Biorepositories and Biospecimen Research Retrieved from
    • Office of Biorepositories and Biospecimen Research. (2010b). NCI best practices for biospecimen resources. Retrieved from http://biospecimens.cancer. gov/global/pdfs/Revised%20NCI %20Best%20Practices-public%20comment.pdf
    • (2010) NCI Best Practices for Biospecimen Resources
  • 32
    • 44949084673 scopus 로고    scopus 로고
    • The future of incidental findings: Should they be viewed as benefits?
    • Parker, L. S. (2008). The future of incidental findings: Should they be viewed as benefits? Journal of Law, Medicine & Ethics, 36(2), 341-351.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.2 , pp. 341-351
    • Parker, L.S.1
  • 33
    • 12744274912 scopus 로고    scopus 로고
    • Research in human genetics: The tension between doing no harm and personal autonomy
    • Pelias, M. K. (2005). Research in human genetics: The tension between doing no harm and personal autonomy Clinical Genetics, 67(1), 1-5.
    • (2005) Clinical Genetics , vol.67 , Issue.1 , pp. 1-5
    • Pelias, M.K.1
  • 34
    • 0034995236 scopus 로고    scopus 로고
    • Literacy, comprehension, and informed consent in clinical research
    • DOI 10.1081/CNV-100103137
    • Raich, P. C., Plomer, K. D., & Coyne, C. A. (2001). Literacy comprehension, and informed consent in clinical research. Cancer Investigation, 19(4), 437-445. (Pubitemid 32525190)
    • (2001) Cancer Investigation , vol.19 , Issue.4 , pp. 437-445
    • Raich, P.C.1    Plomer, K.D.2    Coyne, C.A.3
  • 35
    • 84862928529 scopus 로고    scopus 로고
    • Attitudes and practices of genome investigators regarding return of individual genetic test results
    • National Human Genome Research Institute University of North Carolina, Chapel Hill, NC, April
    • Ramoni, R., McGuire, A., Morley, D., & Joffe, S. (2011). Attitudes and practices of genome investigators regarding return of individual genetic test results. 2011 ELSI Congress, National Human Genome Research Institute, University of North Carolina, Chapel Hill, NC, April 12-14.
    • (2011) 2011 ELSI Congress , pp. 12-14
    • Ramoni, R.1    McGuire, A.2    Morley, D.3    Joffe, S.4
  • 36
    • 77956396559 scopus 로고    scopus 로고
    • Tailoring the process of informed consent in genetic and genomic research
    • Rotimi, C. N. & Marshall, P. A. (2010). Tailoring the process of informed consent in genetic and genomic research. Genome Medicine, 2(3), 20.
    • (2010) Genome Medicine , vol.2 , Issue.3 , pp. 20
    • Rotimi, C.N.1    Marshall, P.A.2
  • 37
    • 79952185587 scopus 로고    scopus 로고
    • Downsizing genomic medicine: Approaching the ethical complexity of whole-genome sequencing by starting small
    • Sharp, R. R. (2011). Downsizing genomic medicine: Approaching the ethical complexity of whole-genome sequencing by starting small. Genetics in Medicine, 13(3), 191-194
    • (2011) Genetics in Medicine , vol.13 , Issue.3 , pp. 191-194
    • Sharp, R.R.1
  • 38
    • 12744278291 scopus 로고    scopus 로고
    • Step into my zapatos, Doc: Understanding and reducing communication disparities in the multicultural informed consent setting
    • Simon, C. M. & Kodish, E. D. (2005). Step into my zapatos, Doc: Understanding and reducing communication disparities in the multicultural informed consent setting. Perspectives in Biology and Medicine, 48(1 Suppl.), S123-138.
    • (2005) Perspectives in Biology and Medicine , vol.48 , Issue.1 SUPPL.
    • Simon, C.M.1    Kodish, E.D.2
  • 39
    • 80052573480 scopus 로고    scopus 로고
    • Active choice but not too active: Public perspectives on biobank consent models
    • Simon, C. M., L'Heureux, J., Murray, J. C., Winokur, P., Weiner, G., Newbury, E. et al. (2011). Active choice but not too active: Public perspectives on biobank consent models. Genetics in Medicine, 13(9), 821-831.
    • (2011) Genetics in Medicine , vol.13 , Issue.9 , pp. 821-831
    • Simon, C.M.1    L'Heureux, J.2    Murray, J.C.3    Winokur, P.4    Weiner, G.5    Newbury, E.6
  • 40
    • 33746266762 scopus 로고    scopus 로고
    • Interpreter accuracy and informed consent among Spanish-speaking families with cancer
    • DOI 10.1080/10810730600752043, PII N77JGQ00G7786N77
    • Simon, C. M., Zyzanski, S. J., Durand, E., Jimenez, X., & Kodish, E. D. (2006). Interpreter accuracy and informed consent among Spanish-speaking families with cancer. Journal of Health Communication, 11(5), 509-522. (Pubitemid 44091866)
    • (2006) Journal of Health Communication , vol.11 , Issue.5 , pp. 509-522
    • Simon, C.M.1    Zyzanski, S.J.2    Durand, E.3    Jimenez, X.4    Kodish, E.D.5
  • 41
    • 61449396663 scopus 로고    scopus 로고
    • Incidental findings: A common law approach
    • Tovino, S. A. (2008). Incidental findings: A common law approach. Accountability in Research, 15(4), 242-261.
    • (2008) Accountability in Research , vol.15 , Issue.4 , pp. 242-261
    • Tovino, S.A.1
  • 42
    • 0003823374 scopus 로고    scopus 로고
    • U. S. Department of Health and Human Services, National Institutes of Health & Office for Protection from Research Risks 45 C.F.R. § 46.116. Retrieved from
    • U. S. Department of Health and Human Services, National Institutes of Health & Office for Protection from Research Risks. (2009). Protection of Human Subjects, 45 C.F.R. § 46.116. Retrieved from http://www.hhs.gov/ohrp/ humansubjects/guidance/45cfr46.htm.
    • (2009) Protection of Human Subjects
  • 44
    • 0141679157 scopus 로고    scopus 로고
    • The charitable trust as a model for genomic biobanks
    • DOI 10.1056/NEJMsb030036
    • Winickoff, D. E. & Winickoff, R. N. (2003). The charitable trust as a model for genomic biobanks. New England Journal of Medicine, 349(12), 1180-1184. (Pubitemid 37122332)
    • (2003) New England Journal of Medicine , vol.349 , Issue.12 , pp. 1180-1184
    • Winickoff, D.E.1    Winickoff, R.N.2
  • 45
    • 70349523756 scopus 로고    scopus 로고
    • IRB chairs' perspectives on genomics research involving stored biological materials: Ethical concerns and proposed solutions
    • Wolf, L. E., Catania, J. A., Dolcini, M. M., Pollack, L. M., & Lo, B. (2008). IRB chairs' perspectives on genomics research involving stored biological materials: Ethical concerns and proposed solutions. Journal of Empirical Research on Human Research Ethics, 3(4), 99-111.
    • (2008) Journal of Empirical Research on Human Research Ethics , vol.3 , Issue.4 , pp. 99-111
    • Wolf, L.E.1    Catania, J.A.2    Dolcini, M.M.3    Pollack, L.M.4    Lo, B.5
  • 46
    • 44949123795 scopus 로고    scopus 로고
    • Introduction: The challenge of incidental findings
    • Wolf, S. M. (2008). Introduction: The challenge of incidental findings. Journal of Law, Medicine & Ethics, 36(2), 216-218.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.2 , pp. 216-218
    • Wolf, S.M.1
  • 47
    • 84862958189 scopus 로고    scopus 로고
    • New developments in governance and over-sight [plenary]
    • April National Human Genome Research Institute, Chapel Hill, NC
    • Wolf, S. M. (2011). New developments in governance and over-sight [plenary]. Presentation exploring the ELSI universe: Ethical, legal, & social implications, April 12-14. National Human Genome Research Institute, Chapel Hill, NC.
    • (2011) Presentation Exploring the ELSI Universe: Ethical, Legal, & Social Implications , pp. 12-14
    • Wolf, S.M.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.