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Volumn 94, Issue 6, 2014, Pages 818-826

Return of genomic results to research participants: The floor, the ceiling, and the choices in between

(26)  Jarvik, Gail P a,b   Amendola, Laura M a   Berg, Jonathan S c   Brothers, Kyle d,e   Clayton, Ellen W f   Chung, Wendy g   Evans, Barbara J h   Evans, James P c   Fullerton, Stephanie M a   Gallego, Carlos J a   Garrison, Nanibaa A f   Gray, Stacy W i,j   Holm, Ingrid A k   Kullo, Iftikhar J l   Lehmann, Lisa Soleymani i   McCarty, Cathy m   Prows, Cynthia A n   Rehm, Heidi L i   Sharp, Richard R l   Salama, Joseph a   more..


Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOETHICS; CHANGE MANAGEMENT; CHEMILUMINESCENCE IMMUNOASSAY; CLINICAL DECISION MAKING; CLINICAL EVALUATION; CLINICAL RESEARCH; CONSENSUS; ELECTRONIC MEDICAL RECORD; EXPLORATORY RESEARCH; FOLLOW UP; GENE MUTATION; GENETIC SCREENING; GENETIC VARIABILITY; GENOMICS; HEALTH STATUS; HUMAN; INCIDENTAL FINDING; MEDICAL CARE; MEDICAL GENETICS; PARTICIPATORY RESEARCH; PATIENT REFERRAL; PRACTICE GUIDELINE; PRIORITY JOURNAL; REFUSAL TO PARTICIPATE; ADVISORY COMMITTEE; BUDGET; CHILDHOOD; CONSULTATION; FUNDING; GENE SEQUENCE; HUMAN GENOME; HUMAN RIGHTS; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MASS SCREENING; MEDICAL DECISION MAKING; MEDICAL INFORMATION; MORALITY; PARENT; PATIENT CARE; PATIENT COUNSELING; PATIENT SAFETY; PHYSICIAN; RESPONSIBILITY; SCIENTIST; SCREENING TEST; STANDARD; THREAT;

EID: 84902271056     PISSN: 00029297     EISSN: 15376605     Source Type: Journal    
DOI: 10.1016/j.ajhg.2014.04.009     Document Type: Article
Times cited : (324)

References (41)
  • 2
    • 84881347061 scopus 로고    scopus 로고
    • Incidental findings in clinical genomics: A clarification
    • American College of Medical Genetics and Genomics
    • American College of Medical Genetics and Genomics Incidental findings in clinical genomics: a clarification Genet. Med. 15 2013 664 666
    • (2013) Genet. Med. , vol.15 , pp. 664-666
  • 5
    • 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
    • National Heart, Lung, and Blood Institute working group
    • R.R. Fabsitz, A. McGuire, R.R. Sharp, M. Puggal, L.M. Beskow, L.G. Biesecker, E. Bookman, W. Burke, E.G. Burchard, G. Church National Heart, Lung, and Blood Institute working group Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group Circ Cardiovasc Genet 3 2010 574 580
    • (2010) Circ Cardiovasc Genet , vol.3 , 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    Bookman, E.7    Burke, W.8    Burchard, E.G.9    Church, G.10
  • 6
    • 84902255408 scopus 로고
    • US Congress Clinical Laboratory Improvement Amendments of 1988 see regulations at 42 CFR 493
    • US Congress (1988). Clinical Laboratory Improvement Amendments of 1988. Public Law 100-578, 102 Stat. 2903; codified as amended at 42 USC § 263a (2006); see regulations at 42 CFR 493.
    • (1988) Public Law 100-578, 102 Stat. 2903; Codified As Amended at 42 USC § 263a
  • 10
    • 84902289230 scopus 로고    scopus 로고
    • Presidential Commission for the Study of Bioethical Issues (2013). Anticipate and Communicate Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts
    • Department of Health & Human Services, December
    • Presidential Commission for the Study of Bioethical Issues (2013). Anticipate and Communicate Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. Report of the Presidential Commission for the Study of Bioethical Issues, Department of Health & Human Services, December 2013. http://bioethics.gov/sites/default/ files/FINALAnticipateCommunicate-PCSBI-0.pdf.
    • (2013) Report of the Presidential Commission for the Study of Bioethical Issues
  • 11
    • 44449162023 scopus 로고    scopus 로고
    • Communicating the results of clinical research to participants: Attitudes, practices, and future directions
    • D.I. Shalowitz, and F.G. Miller Communicating the results of clinical research to participants: attitudes, practices, and future directions PLoS Med. 5 2008 e91
    • (2008) PLoS Med. , vol.5 , pp. 91
    • Shalowitz, D.I.1    Miller, F.G.2
  • 12
    • 84887969538 scopus 로고    scopus 로고
    • Stakeholder views on returning research results
    • S.B. Haga, and J.Q. Zhao Stakeholder views on returning research results Adv. Genet. 84 2013 41 81
    • (2013) Adv. Genet. , vol.84 , pp. 41-81
    • Haga, S.B.1    Zhao, J.Q.2
  • 13
    • 0037397542 scopus 로고    scopus 로고
    • Issues of consent and feedback in a genetic epidemiological study of women with breast cancer
    • M.P. Richards, M. Ponder, P. Pharoah, S. Everest, and J. Mackay Issues of consent and feedback in a genetic epidemiological study of women with breast cancer J. Med. Ethics 29 2003 93 96
    • (2003) J. Med. Ethics , vol.29 , pp. 93-96
    • Richards, M.P.1    Ponder, M.2    Pharoah, P.3    Everest, S.4    Mackay, J.5
  • 14
    • 34548164155 scopus 로고    scopus 로고
    • Disclosure of genetics research results after the death of the patient participant: A qualitative study of the impact on relatives
    • E. Ormondroyd, C. Moynihan, M. Watson, C. Foster, S. Davolls, A. Ardern-Jones, and R. Eeles Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives J. Genet. Couns. 16 2007 527 538
    • (2007) J. Genet. Couns. , vol.16 , pp. 527-538
    • Ormondroyd, E.1    Moynihan, C.2    Watson, M.3    Foster, C.4    Davolls, S.5    Ardern-Jones, A.6    Eeles, R.7
  • 15
    • 34547657944 scopus 로고    scopus 로고
    • How does the collection of genetic test results affect research participants?
    • D. Wendler, and R. Pentz How does the collection of genetic test results affect research participants? Am. J. Med. Genet. A. 143A 2007 1733 1738
    • (2007) Am. J. Med. Genet. A. , vol.143 A , pp. 1733-1738
    • Wendler, D.1    Pentz, R.2
  • 17
    • 84880515119 scopus 로고    scopus 로고
    • Not-so-incidental findings: The ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing
    • M. Allyse, and M. Michie Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing Trends Biotechnol. 31 2013 439 441
    • (2013) Trends Biotechnol. , vol.31 , pp. 439-441
    • Allyse, M.1    Michie, M.2
  • 18
    • 84883889589 scopus 로고    scopus 로고
    • ACMG recommendations on incidental findings are flawed scientifically and ethically
    • N.A. Holtzman ACMG recommendations on incidental findings are flawed scientifically and ethically Genet. Med. 15 2013 750 751
    • (2013) Genet. Med. , vol.15 , pp. 750-751
    • Holtzman, N.A.1
  • 19
    • 84880411296 scopus 로고    scopus 로고
    • Mandatory extended searches in all genome sequencing: "incidental findings," patient autonomy, and shared decision making
    • L.F. Ross, M.A. Rothstein, and E.W. Clayton Mandatory extended searches in all genome sequencing: "incidental findings," patient autonomy, and shared decision making JAMA 310 2013 367 368
    • (2013) JAMA , vol.310 , pp. 367-368
    • Ross, L.F.1    Rothstein, M.A.2    Clayton, E.W.3
  • 20
    • 84878364688 scopus 로고    scopus 로고
    • Point-counterpoint. Patient autonomy and incidental findings in clinical genomics
    • S.M. Wolf, G.J. Annas, and S. Elias Point-counterpoint. Patient autonomy and incidental findings in clinical genomics Science 340 2013 1049 1050
    • (2013) Science , vol.340 , pp. 1049-1050
    • Wolf, S.M.1    Annas, G.J.2    Elias, S.3
  • 21
    • 84890044517 scopus 로고    scopus 로고
    • Minimizing liability risks under the ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing
    • B.J. Evans Minimizing liability risks under the ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing Genet. Med. 15 2013 915 920
    • (2013) Genet. Med. , vol.15 , pp. 915-920
    • Evans, B.J.1
  • 22
    • 84887474444 scopus 로고    scopus 로고
    • Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium
    • Members of the CSER Actionability and Return of Results Working Group
    • J.S. Berg, L.M. Amendola, C. Eng, E. Van Allen, S.W. Gray, N. Wagle, H.L. Rehm, E.T. DeChene, M.C. Dulik, F.M. Hisama Members of the CSER Actionability and Return of Results Working Group Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium Genet. Med. 15 2013 860 867
    • (2013) Genet. Med. , vol.15 , pp. 860-867
    • Berg, J.S.1    Amendola, L.M.2    Eng, C.3    Van Allen, E.4    Gray, S.W.5    Wagle, N.6    Rehm, H.L.7    Dechene, E.T.8    Dulik, M.C.9    Hisama, F.M.10
  • 23
    • 84883880710 scopus 로고    scopus 로고
    • Paternalism and the ACMG recommendations on genomic incidental findings: Patients seen but not heard
    • A. Townsend, S. Adam, P.H. Birch, and J.M. Friedman Paternalism and the ACMG recommendations on genomic incidental findings: patients seen but not heard Genet. Med. 15 2013 751 752
    • (2013) Genet. Med. , vol.15 , pp. 751-752
    • Townsend, A.1    Adam, S.2    Birch, P.H.3    Friedman, J.M.4
  • 25
    • 84897723575 scopus 로고    scopus 로고
    • Addressing the ethical challenges in genetic testing and sequencing of children
    • Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group
    • E.W. Clayton, L.B. McCullough, L.G. Biesecker, S. Joffe, L.F. Ross, S.M. Wolf Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group Addressing the ethical challenges in genetic testing and sequencing of children Am. J. Bioeth. 14 2014 3 9
    • (2014) Am. J. Bioeth. , vol.14 , pp. 3-9
    • Clayton, E.W.1    McCullough, L.B.2    Biesecker, L.G.3    Joffe, S.4    Ross, L.F.5    Wolf, S.M.6
  • 26
    • 84896319204 scopus 로고    scopus 로고
    • Return of results: Ethical and legal distinctions between research and clinical care
    • W. Burke, B.J. Evans, and G.P. Jarvik Return of results: Ethical and legal distinctions between research and clinical care Am. J. Med. Genet. C. Semin. Med. Genet. 166 2014 105 111
    • (2014) Am. J. Med. Genet. C. Semin. Med. Genet. , vol.166 , pp. 105-111
    • Burke, W.1    Evans, B.J.2    Jarvik, G.P.3
  • 27
    • 77955628265 scopus 로고    scopus 로고
    • Offering individual genetic research results: Context matters
    • L.M. Beskow, and W. Burke Offering individual genetic research results: context matters Sci. Transl. Med. 2 2010 38cm20
    • (2010) Sci. Transl. Med. , vol.2
    • Beskow, L.M.1    Burke, W.2
  • 29
    • 0028872836 scopus 로고
    • Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors
    • Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors Am. J. Hum. Genet. 57 1995 1233 1241
    • (1995) Am. J. Hum. Genet. , vol.57 , pp. 1233-1241
  • 30
    • 84874584838 scopus 로고    scopus 로고
    • Ethical and Policy Issues in Genetic Testing and Screening of Children
    • Committee on Bioethics Committee on Genetics American College of Medical Genetics and Genomics Social, Ethical, and Legal Issues Committee
    • Committee on Bioethics Committee on Genetics American College of Medical Genetics and Genomics Social, Ethical, and Legal Issues Committee Ethical and Policy Issues in Genetic Testing and Screening of Children Pediatrics 131 2013 620 622
    • (2013) Pediatrics , vol.131 , pp. 620-622
  • 31
    • 84875178404 scopus 로고    scopus 로고
    • Technical report: Ethical and policy issues in genetic testing and screening of children
    • American Academy of Pediatrics American College of Medical Genetics and Genomics
    • L.F. Ross, H.M. Saal, K.L. David, R.R. Anderson American Academy of Pediatrics American College of Medical Genetics and Genomics Technical report: Ethical and policy issues in genetic testing and screening of children Genet. Med. 15 2013 234 245
    • (2013) Genet. Med. , vol.15 , pp. 234-245
    • Ross, L.F.1    Saal, H.M.2    David, K.L.3    Anderson, R.R.4
  • 32
    • 84890795800 scopus 로고    scopus 로고
    • Return of whole-genome sequencing results in paediatric research: A statement of the P3G international paediatrics platform
    • P3G International Paediatrics Platform Members
    • B.M. Knoppers, D. Avard, K. Sénécal, M.H. Zawati P3G International Paediatrics Platform Members Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform Eur. J. Hum. Genet. 22 2014 3 5
    • (2014) Eur. J. Hum. Genet. , vol.22 , pp. 3-5
    • Knoppers, B.M.1    Avard, D.2    Sénécal, K.3    Zawati, M.H.4
  • 33
    • 84856333006 scopus 로고    scopus 로고
    • Willingness-to-pay for predictive tests with no immediate treatment implications: A survey of US residents
    • P.J. Neumann, J.T. Cohen, J.K. Hammitt, T.W. Concannon, H.R. Auerbach, C. Fang, and D.M. Kent Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents Health Econ. 21 2012 238 251
    • (2012) Health Econ. , vol.21 , pp. 238-251
    • Neumann, P.J.1    Cohen, J.T.2    Hammitt, J.K.3    Concannon, T.W.4    Auerbach, H.R.5    Fang, C.6    Kent, D.M.7
  • 34
    • 81355135387 scopus 로고    scopus 로고
    • To test or not to test the role of attitudes, knowledge, and religious involvement among U.S. Adults on intent-to-obtain adult genetic testing
    • A. Botoseneanu, J.A. Alexander, and J. Banaszak-Holl To test or not to test? The role of attitudes, knowledge, and religious involvement among U.S. adults on intent-to-obtain adult genetic testing Health Educ. Behav. 38 2011 617 628
    • (2011) Health Educ. Behav. , vol.38 , pp. 617-628
    • Botoseneanu, A.1    Alexander, J.A.2    Banaszak-Holl, J.3
  • 35
    • 79956094948 scopus 로고    scopus 로고
    • Interest in genetic testing for modest changes in breast cancer risk: Implications for SNP testing
    • K.D. Graves, B.N. Peshkin, G. Luta, W. Tuong, and M.D. Schwartz Interest in genetic testing for modest changes in breast cancer risk: implications for SNP testing Public Health Genomics 14 2011 178 189
    • (2011) Public Health Genomics , vol.14 , pp. 178-189
    • Graves, K.D.1    Peshkin, B.N.2    Luta, G.3    Tuong, W.4    Schwartz, M.D.5
  • 40
    • 84883892605 scopus 로고    scopus 로고
    • Self-guided management of exome and whole-genome sequencing results: Changing the results return model
    • J.H. Yu, S.M. Jamal, H.K. Tabor, and M.J. Bamshad Self-guided management of exome and whole-genome sequencing results: changing the results return model Genet. Med. 15 2013 684 690
    • (2013) Genet. Med. , vol.15 , pp. 684-690
    • Yu, J.H.1    Jamal, S.M.2    Tabor, H.K.3    Bamshad, M.J.4


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