메뉴 건너뛰기




Volumn 43, Issue 3, 2015, Pages 440-463

Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations

(16)  Wolf, Susan M a   Branum, Rebecca b   Koenig, Barbara A c   Petersen, Gloria M d   Berry, Susan A a,m   Beskow, Laura M e,n,o,p   Daly, Mary B f   Fernandez, Conrad V g   Green, Robert C h   Leroy, Bonnie S a   Lindor, Noralane M i,q,r   O'Rourke, P Pearl j,s   Breitkopf, Carmen Radecki d,t   Rothstein, Mark A k   Van Ness, Brian a   Wilfond, Benjamin S l,u,v,w  


Author keywords

[No Author keywords available]

Indexed keywords

ADULT; CHILD; ETHICS; FAMILY; GENOMICS; HUMAN; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; LEGISLATION AND JURISPRUDENCE; RESEARCH SUBJECT;

EID: 84937591383     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1111/jlme.12288     Document Type: Article
Times cited : (85)

References (90)
  • 1
    • 84859566974 scopus 로고    scopus 로고
    • Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets
    • S. M. Wolf et al., "Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets, " Genetics in Medicine 14, no. 4 (2012)
    • (2012) Genetics in Medicine , vol.14 , Issue.4 , pp. 361-384
    • Wolf, S.M.1
  • 2
    • 79951863517 scopus 로고    scopus 로고
    • Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants
    • R. R. Fabsitz, "Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants," Circulation: Cardiovascular Genetics 3, no. 6 (2010): 574-580
    • (2010) Circulation: Cardiovascular Genetics , vol.3 , Issue.6 , pp. 574-580
    • Fabsitz, R.R.1
  • 3
    • 44949211505 scopus 로고    scopus 로고
    • Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations
    • S. M. Wolf, "Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations," Journal of Law, Medicine & Ethics 36, no. 2 (2008): 219-248.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.2 , pp. 219-248
    • Wolf, S.M.1
  • 4
    • 84891709193 scopus 로고    scopus 로고
    • Communication of Clinically Useful NGS Results to At-Risk Relatives of Deceased Research Participants: Toward Active Disclosure?
    • L. Battistuzzi et al., "Communication of Clinically Useful NGS Results to At-Risk Relatives of Deceased Research Participants: Toward Active Disclosure?" Journal of Clinical Oncology 31, no. 32 (2013): 4164-4165;
    • (2013) Journal of Clinical Oncology , vol.31 , Issue.32 , pp. 4164-4165
    • Battistuzzi, L.1
  • 5
    • 84880482533 scopus 로고    scopus 로고
    • Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology
    • M. P. Lolkema et al., "Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology, " Journal of Clinical Oncology 31, no. 15 (2013): 1842-1848
    • (2013) Journal of Clinical Oncology , vol.31 , Issue.15 , pp. 1842-1848
    • Lolkema, M.P.1
  • 6
    • 84866441332 scopus 로고    scopus 로고
    • Risks to Relatives in Genomic Research: A Duty to Warn?
    • Y. Bombard, K. Offit, and M. E. Robson, "Risks to Relatives in Genomic Research: A Duty to Warn?" American Journal of Bioethics 12, no. 10 (2012); 12-14.
    • (2012) American Journal of Bioethics , vol.12 , Issue.10 , pp. 12-14
    • Bombard, Y.1    Offit, K.2    Robson, M.E.3
  • 7
    • 84866439499 scopus 로고    scopus 로고
    • Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy
    • A. L. Bredenoord and J. J. M. van Delden, "Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy, " American Journal of Bioethics 12, no. 10 (2012): 12-14.
    • (2012) American Journal of Bioethics , vol.12 , Issue.10 , pp. 12-14
    • Bredenoord, A.L.1    van Delden, J.J.M.2
  • 8
    • 84866439540 scopus 로고    scopus 로고
    • Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives
    • B. Chan et al., "Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives, " American Journal of Bioethics 12, no. 10 (2012): 1-8;
    • (2012) American Journal of Bioethics , vol.12 , Issue.10 , pp. 1-8
    • Chan, B.1
  • 9
    • 84866448330 scopus 로고    scopus 로고
    • Beneficence, Clinical Urgency, and the Return of Individual Research Results to Relatives
    • S. M. Fullerton et al., "Beneficence, Clinical Urgency, and the Return of Individual Research Results to Relatives, " American Journal of Bioethics 12, no. 10 (2012): 9-10.
    • (2012) American Journal of Bioethics , vol.12 , Issue.10 , pp. 9-10
    • Fullerton, S.M.1
  • 10
    • 84944681478 scopus 로고    scopus 로고
    • National Cancer Institute, NCI Best Practices for Biospecimen Resources (2011)
    • Office of Biorepositories and Biospecimen Research, National Cancer Institute, NCI Best Practices for Biospecimen Resources (2011), available at
  • 11
    • 84944687700 scopus 로고    scopus 로고
    • Cancer Genetics Risk and Counseling Physician Data Query: The Option of Genetic Testing (2014),
    • (last visited September 1, 2015)
    • National Cancer Institute, Cancer Genetics Risk and Counseling Physician Data Query: The Option of Genetic Testing (2014), available at (last visited September 1, 2015)
  • 12
    • 34249651432 scopus 로고    scopus 로고
    • Communicating Genetic Information in Families: A Review of Guidelines and Position Papers
    • L. E. Forrest et al., "Communicating Genetic Information in Families: A Review of Guidelines and Position Papers, " European Journal of Human Genetics 15, no. 6 (2007): 612-618;
    • (2007) European Journal of Human Genetics , vol.15 , Issue.6 , pp. 612-618
    • Forrest, L.E.1
  • 13
    • 0038501057 scopus 로고    scopus 로고
    • American Society of Clinical Oncology Policy Statement Update: Genetic Testing for Cancer Susceptibility
    • American Society of Clinical Oncology, "American Society of Clinical Oncology Policy Statement Update: Genetic Testing for Cancer Susceptibility, " Journal of Clinical Oncology 21, no. 12 (2003): 2397-2406
    • (2003) Journal of Clinical Oncology , vol.21 , Issue.12 , pp. 2397-2406
  • 14
    • 0001539758 scopus 로고    scopus 로고
    • What Should the Law Say About Disclosure of Genetic Information to Relatives?
    • E. W. Clayton, "What Should the Law Say About Disclosure of Genetic Information to Relatives?" Journal of Health Care Law & Policy 1, no. 2 (1998): 373-390.
    • (1998) Journal of Health Care Law & Policy , vol.1 , Issue.2 , pp. 373-390
    • Clayton, E.W.1
  • 15
    • 4544245238 scopus 로고    scopus 로고
    • The 'Duty to Warn' a Patient's Family Members about Hereditary Disease Risks
    • K. Offit et al., "The 'Duty to Warn' a Patient's Family Members about Hereditary Disease Risks, " JAMA 292, no. 12 (2004): 1469-1473.
    • (2004) JAMA , vol.292 , Issue.12 , pp. 1469-1473
    • Offit, K.1
  • 16
    • 0031991614 scopus 로고    scopus 로고
    • Professional Disclosure of Familial Genetic Information
    • American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure, "Professional Disclosure of Familial Genetic Information, " American Journal of Human Genetics 62, no. 2 (1998): 474-483.
    • (1998) American Journal of Human Genetics , vol.62 , Issue.2 , pp. 474-483
  • 19
    • 84921691943 scopus 로고    scopus 로고
    • Moral Entanglements: The Ancillary-Care Obligations of Medical Researchers (New York: Oxford University Press)
    • H. S. Richardson, Moral Entanglements: The Ancillary-Care Obligations of Medical Researchers (New York: Oxford University Press, 2012)
    • (2012)
    • Richardson, H.S.1
  • 20
    • 84858422328 scopus 로고    scopus 로고
    • Ethical Considerations for Biobanking: Should Individual Research Results Be Shared with Relatives?
    • J. R. Garrett, "Ethical Considerations for Biobanking: Should Individual Research Results Be Shared with Relatives?" Future Medicine 9, no. 2 (2012): 159-162.
    • (2012) Future Medicine , vol.9 , Issue.2 , pp. 159-162
    • Garrett, J.R.1
  • 21
    • 84859625509 scopus 로고    scopus 로고
    • Practical Implementation Issues and Challenges for Biobanks in the Return of Individual Research Results
    • M. J. Bledsoe et al., "Practical Implementation Issues and Challenges for Biobanks in the Return of Individual Research Results, " Genetics in Medicine 14, no. 4 (2012): 478-483
    • (2012) Genetics in Medicine , vol.14 , Issue.4 , pp. 478-483
    • Bledsoe, M.J.1
  • 22
    • 77955628265 scopus 로고    scopus 로고
    • Offering Individual Genetic Research Results: Context Matters
    • 38cm20.
    • L. M. Beskow and W. Burke, "Offering Individual Genetic Research Results: Context Matters, " Science Translational Medicine 2, no. 38 (2010): 38cm20.
    • (2010) Science Translational Medicine , vol.2 , Issue.38
    • Beskow, L.M.1    Burke, W.2
  • 23
    • 84898472379 scopus 로고    scopus 로고
    • Communication of Genetic Test Results to Family and Health-Care Providers Following Disclosure of Research Results
    • K. D. Graves et al., "Communication of Genetic Test Results to Family and Health-Care Providers Following Disclosure of Research Results, " Genetics in Medicine 16, no. 4 (2014): 294-301;
    • (2014) Genetics in Medicine , vol.16 , Issue.4 , pp. 294-301
    • Graves, K.D.1
  • 24
    • 84884239392 scopus 로고    scopus 로고
    • Relationships Matter: Ethical Considerations for Returning Results to Family Members of Deceased Subjects
    • L. C. Milner et al., "Relationships Matter: Ethical Considerations for Returning Results to Family Members of Deceased Subjects, " American Journal of Bioethics 13, no. 10 (2013): 66-67
    • (2013) American Journal of Bioethics , vol.13 , Issue.10 , pp. 66-67
    • Milner, L.C.1
  • 25
    • 84884226780 scopus 로고    scopus 로고
    • Should Researchers Disclose Results to Descendants
    • M. A. Rothstein, "Should Researchers Disclose Results to Descendants?" American Journal of Bioethics 13, no. 10 (2013): 64-65
    • (2013) American Journal of Bioethics , vol.13 , Issue.10 , pp. 64-65
    • Rothstein, M.A.1
  • 26
    • 84884225509 scopus 로고    scopus 로고
    • The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome
    • H. A. Taylor and B. S. Wilfond, "The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome, " American Journal of Bioethics 13, no. 10 (2013): 61
    • (2013) American Journal of Bioethics , vol.13 , Issue.10 , pp. 61
    • Taylor, H.A.1    Wilfond, B.S.2
  • 27
    • 84866463430 scopus 로고    scopus 로고
    • Disclosing Decedents' Research Results to Relatives Violates the HIPAA Privacy Rule
    • M. A. Rothstein, "Disclosing Decedents' Research Results to Relatives Violates the HIPAA Privacy Rule, " American Journal of Bioethics 12, no. 10 (2012): 16-17
    • (2012) American Journal of Bioethics , vol.12 , Issue.10 , pp. 16-17
    • Rothstein, M.A.1
  • 28
    • 81255208683 scopus 로고    scopus 로고
    • The Return of Results of Deceased Research Participants
    • A. M. Tassé, "The Return of Results of Deceased Research Participants, " Journal of Law, Medicine & Ethics 39, no. 4 (2011): 621-630.
    • (2011) Journal of Law, Medicine & Ethics , vol.39 , Issue.4 , pp. 621-630
    • Tassé, A.M.1
  • 29
    • 84944681836 scopus 로고    scopus 로고
    • Preferences Regarding Return of Genomic Research Results to Relatives of Research Participants, Including After Participant Death: Empirical Results from a Cancer Biobank
    • C. Radecki Breitkopf et al., "Preferences Regarding Return of Genomic Research Results to Relatives of Research Participants, Including After Participant Death: Empirical Results from a Cancer Biobank, " Journal of Law, Medicine & Ethics 43, no. 3 (2015): 464-475.
    • (2015) Journal of Law, Medicine & Ethics , vol.43 , Issue.3 , pp. 464-475
    • Radecki Breitkopf, C.1
  • 30
    • 84905592105 scopus 로고    scopus 로고
    • Attitudes of Parents Toward the Return of Targeted and Incidental Genomic Research Findings in Children
    • C. V. Fernandez et al., "Attitudes of Parents Toward the Return of Targeted and Incidental Genomic Research Findings in Children, " Genetics in Medicine 16, no. 8 (2014): 633-640
    • (2014) Genetics in Medicine , vol.16 , Issue.8 , pp. 633-640
    • Fernandez, C.V.1
  • 31
    • 84859608971 scopus 로고    scopus 로고
    • Public Preferences Regarding the Return of Individual Genetic Research Results: Findings from a Qualitative Focus Group Study
    • J. M. Bollinger et al., "Public Preferences Regarding the Return of Individual Genetic Research Results: Findings from a Qualitative Focus Group Study, " Genetics in Medicine 14, no. 4 (2012): 451-457
    • (2012) Genetics in Medicine , vol.14 , Issue.4 , pp. 451-457
    • Bollinger, J.M.1
  • 32
    • 78349267947 scopus 로고    scopus 로고
    • Communication of Biobanks' Research Results: What Do (Potential) Participants Want?
    • T. M. Meulenkamp et al., "Communication of Biobanks' Research Results: What Do (Potential) Participants Want?" American Journal of Medical Genetics 152 Part A, no. 10 (2010): 2482-2492
    • (2010) American Journal of Medical Genetics , vol.152 , Issue.10 , pp. 2482-2492
    • Meulenkamp, T.M.1
  • 33
    • 57349167685 scopus 로고    scopus 로고
    • Public Expectations for Return of Results from Large-Cohort Genetic Research
    • J. Murphy et al., "Public Expectations for Return of Results from Large-Cohort Genetic Research, " American Journal of Bioethics 8, no. 11 (2008): 36-43
    • (2008) American Journal of Bioethics , vol.8 , Issue.11 , pp. 36-43
    • Murphy, J.1
  • 34
    • 84904653323 scopus 로고    scopus 로고
    • Biobank Participants' Preferences for Disclosure of Genetic Research Results: Perspectives from the OurGenes, OurHealth, OurCommunity Project
    • Compare N. L. Allen et al., "Biobank Participants' Preferences for Disclosure of Genetic Research Results: Perspectives from the OurGenes, OurHealth, OurCommunity Project, " Mayo Clinic Proceedings 89, no. 6 (2014): 738-746
    • (2014) Mayo Clinic Proceedings , vol.89 , Issue.6 , pp. 738-746
    • Compare, N.L.A.1
  • 35
    • 84944675871 scopus 로고    scopus 로고
    • Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death
    • L. M. Amendola et al., "Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death, " Journal of Law, Medicine & Ethics 43, no. 3 (2015): 476-485.
    • (2015) Journal of Law, Medicine & Ethics , vol.43 , Issue.3 , pp. 476-485
    • Amendola, L.M.1
  • 36
    • 84944708949 scopus 로고    scopus 로고
    • Should We Offer Genomic Results to a Research Participant's Family, Including After Death?
    • (November 6, 2014), (last visited September 1, 2015).
    • Consortium on Law and Values in Health, Environment & the Life Sciences, Conference, "Should We Offer Genomic Results to a Research Participant's Family, Including After Death?" (November 6, 2014), available at (last visited September 1, 2015).
  • 37
    • 84944686555 scopus 로고    scopus 로고
    • HIPAA & Research: What Do I Need to Know?
    • (last visited September 1, 2015).
    • Mercy College, HIPAA & Research: What Do I Need to Know? available at (last visited September 1, 2015).
  • 38
    • 84944708950 scopus 로고    scopus 로고
    • HIPAA Questions and Answers Relating to Research
    • (last visited September 1, 2015).
    • Johns Hopkins Medicine, Office of Human Subjects Research - Institutional Review Boards, "HIPAA Questions and Answers Relating to Research, " available at (last visited September 1, 2015).
  • 39
    • 84944681553 scopus 로고    scopus 로고
    • CLIA Program and HIPAA Privacy Rule; Patients' Access to Test Reports; Final Rule
    • 79 Federal Register
    • U.S. Department of Health and Human Services, CLIA Program and HIPAA Privacy Rule; Patients' Access to Test Reports; Final Rule, 79 Federal Register 7290-7316 (2014)
    • (2014) , pp. 7290-7316
  • 40
    • 84908879578 scopus 로고    scopus 로고
    • Regulatory Changes Raise Troubling Questions for Genomic Testing
    • B. J. Evans et al., "Regulatory Changes Raise Troubling Questions for Genomic Testing, " Genetics in Medicine 16, no. 11 (2014): 799-803
    • (2014) Genetics in Medicine , vol.16 , Issue.11 , pp. 799-803
    • Evans, B.J.1
  • 41
    • 84944708951 scopus 로고    scopus 로고
    • Health Information Privacy
    • U.S. Department of Health and Human Services, "Health Information Privacy, Personal Representatives, " available at (last visited September 1, 2015)
    • Personal Representatives
  • 42
    • 70349570441 scopus 로고    scopus 로고
    • Privacy and Health Information Technology
    • D. McGraw, "Privacy and Health Information Technology, " Journal of Law, Medicine & Ethics 37, Supp. 2 (2009): 123-149
    • (2009) Journal of Law, Medicine & Ethics , vol.37 , pp. 123-149
    • McGraw, D.1
  • 43
    • 84944708952 scopus 로고    scopus 로고
    • Office of Civil Rights, U.S. Department of Health and Human Services, FAQ: Under the HIPAA Privacy Rule, May a Health Care Provider Disclose Protected Health Information About an Individual to Another Provider, When Such Information Is Requested for the Treatment of a Family Member of the Individual? available at (last visited September 1, 2015)
  • 44
    • 84944686722 scopus 로고    scopus 로고
    • Frequently Asked Questions About Family Medical History Information
    • (last visited May 10, 2015)
    • U.S. Department of Health and Human Services, Frequently Asked Questions About Family Medical History Information, available at (last visited May 10, 2015)
  • 45
    • 84944681047 scopus 로고    scopus 로고
    • Preamble to Final HIPAA Privacy Rule
    • (last visited July 17, 2014)
    • U.S. Department of Health and Human Services, Preamble to Final HIPAA Privacy Rule (2000)available at (last visited July 17, 2014)
    • (2000)
  • 47
    • 84944708953 scopus 로고    scopus 로고
    • For a compendium of state genetic privacy statutes, see National Human Genome Research Institute (NHGRI), Genome Statute and Legislation Database(last visited September 1, 2015).
    • South Carolina Statutes § 38-93-40 (2014). For a compendium of state genetic privacy statutes, see National Human Genome Research Institute (NHGRI), Genome Statute and Legislation Database, available at (last visited September 1, 2015).
    • (2014)
  • 48
    • 84874584838 scopus 로고    scopus 로고
    • Policy Statement: Ethical and Policy Issues in Genetic Testing and Screening of Children
    • American Academy of Pediatrics and American College of Medical Genetics, "Policy Statement: Ethical and Policy Issues in Genetic Testing and Screening of Children, " Pediatrics 131, no. 3 (2013): 620-622
    • (2013) Pediatrics , vol.131 , Issue.3 , pp. 620-622
  • 49
    • 84875178404 scopus 로고    scopus 로고
    • Technical Report: Ethical and Policy Issues in Genetic Testing and Screening of Children
    • L. F. Ross et al., "Technical Report: Ethical and Policy Issues in Genetic Testing and Screening of Children, " Genetics in Medicine 15, no. 3 (2013): 234-245
    • (2013) Genetics in Medicine , vol.15 , Issue.3 , pp. 234-245
    • Ross, L.F.1
  • 50
    • 0028872836 scopus 로고
    • "Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents, "
    • [hereinafter ASHG & ACMG 1995].
    • American Society of Human Genetics Board of Directors and American College of Medical Genetics Board of Directors, "Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents, " American Journal of Human Genetics 57, no. 5 (1995): 1233-1241 [hereinafter ASHG & ACMG 1995].
    • (1995) American Journal of Human Genetics , vol.57 , Issue.5 , pp. 1233-1241
  • 51
    • 84880535720 scopus 로고    scopus 로고
    • ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing
    • R. C. Green et al., "ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing, " Genetics in Medicine 15, no. 7 (2013): 565-574
    • (2013) Genetics in Medicine , vol.15 , Issue.7 , pp. 565-574
    • Green, R.C.1
  • 52
    • 84897723575 scopus 로고    scopus 로고
    • Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children
    • E. W. Clayton et al., "Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children, " American Journal of Bioethics 14, no. 3 (2014): 3-9;
    • (2014) American Journal of Bioethics , vol.14 , Issue.3 , pp. 3-9
    • Clayton, E.W.1
  • 53
    • 84887439425 scopus 로고    scopus 로고
    • Recommendations for Returning Genomic Incidental Findings? We Need to Talk!
    • W. Burke et al., "Recommendations for Returning Genomic Incidental Findings? We Need to Talk!" Genetics in Medicine 15, no. 11 (2013): 854-859;
    • (2013) Genetics in Medicine , vol.15 , Issue.11 , pp. 854-859
    • Burke, W.1
  • 54
    • 84878354128 scopus 로고    scopus 로고
    • Ethics and Genomic Incidental Findings
    • A. M. McGuire et al., "Ethics and Genomic Incidental Findings, " Science 340, no. 6136 (2013): 1047-1048;
    • (2013) Science , vol.340 , Issue.6136 , pp. 1047-1048
    • McGuire, A.M.1
  • 55
    • 84878364688 scopus 로고    scopus 로고
    • Patient Autonomy and Incidental Findings in Clinical Genomics
    • S. M. Wolf, G. J. Annas, and S. Elias, "Patient Autonomy and Incidental Findings in Clinical Genomics, " Science 340, no. 6136 (2013): 1049-1050.
    • (2013) Science , vol.340 , Issue.6136 , pp. 1049-1050
    • Wolf, S.M.1    Annas, G.J.2    Elias, S.3
  • 56
    • 84920528362 scopus 로고    scopus 로고
    • ACMG Policy Statement: Updated Recommendations Regarding Analysis and Reporting of Secondary Findings in Clinical Genome-scale Sequencing
    • ACMG Board of Directors, "ACMG Policy Statement: Updated Recommendations Regarding Analysis and Reporting of Secondary Findings in Clinical Genome-scale Sequencing, " Genetics in Medicine 17, no. 1 (2015): 68-69 (noting approval by the ACMG Board of Directors in September 2014).
    • (2015) Genetics in Medicine , vol.17 , Issue.1 , pp. 68-69
  • 57
    • 84921889893 scopus 로고    scopus 로고
    • Ethical Perspectives on Translational Pharmacogenetic Research Involving Children
    • P. Madadi, "Ethical Perspectives on Translational Pharmacogenetic Research Involving Children, " Pediatric Drugs 17, no. 1 (2015): 91-95;
    • (2015) Pediatric Drugs , vol.17 , Issue.1 , pp. 91-95
    • Madadi, P.1
  • 58
    • 84903757291 scopus 로고    scopus 로고
    • Guidelines for Return of Research Results from Pediatric Genomic Studies: Deliberations of the Boston Children's Hospital Gene Partnership Informed Cohort Oversight Board
    • I. A. Holm et al., "Guidelines for Return of Research Results from Pediatric Genomic Studies: Deliberations of the Boston Children's Hospital Gene Partnership Informed Cohort Oversight Board, " Genetics in Medicine 16, no. 7 (2014): 547-552
    • (2014) Genetics in Medicine , vol.16 , Issue.7 , pp. 547-552
    • Holm, I.A.1
  • 59
    • 84902212511 scopus 로고    scopus 로고
    • Returning Incidental Findings from Genetic Research to Children: Views of Parents of Children Affected by Rare Diseases
    • E. Kleiderman et al., "Returning Incidental Findings from Genetic Research to Children: Views of Parents of Children Affected by Rare Diseases, " Journal of Medical Ethics 40, no. 10 (2014): 691-696;
    • (2014) Journal of Medical Ethics , vol.40 , Issue.10 , pp. 691-696
    • Kleiderman, E.1
  • 60
    • 84903733410 scopus 로고    scopus 로고
    • Do Participants in Genome Sequencing Studies of Psychiatric Disorders Wish to Be Informed of Their Results? A Survey Study
    • E. T. Bui et al., "Do Participants in Genome Sequencing Studies of Psychiatric Disorders Wish to Be Informed of Their Results? A Survey Study, " PLoS One 9, no. 7 (2014): e101111;
    • (2014) PLoS One , vol.9 , Issue.7 , pp. e101111
    • Bui, E.T.1
  • 61
    • 84879601453 scopus 로고    scopus 로고
    • Return of Incidental Findings in Genomic Medicine: Measuring What Patients Value: Development of an Instrument to Measure Preferences for Information from Next-Generation Testing (IMPRINT)
    • C. S. Bennette et al., "Return of Incidental Findings in Genomic Medicine: Measuring What Patients Value: Development of an Instrument to Measure Preferences for Information from Next-Generation Testing (IMPRINT), " Genetics in Medicine 15, no. 11 (2013): 873-881
    • (2013) Genetics in Medicine , vol.15 , Issue.11 , pp. 873-881
    • Bennette, C.S.1
  • 62
    • 81555203460 scopus 로고    scopus 로고
    • Motivators for Participation in a Whole-Genome Sequencing Study: Implications for Translational Genomics Research
    • F. M. Facio et al., "Motivators for Participation in a Whole-Genome Sequencing Study: Implications for Translational Genomics Research, " European Journal of Human Genetics 19, no. 12 (2011): 1213-1217
    • (2011) European Journal of Human Genetics , vol.19 , Issue.12 , pp. 1213-1217
    • Facio, F.M.1
  • 63
    • 80053386108 scopus 로고    scopus 로고
    • Public Perspectives on Returning Genetics and Genomics Research Results
    • J. O'Daniel and S. B. Haga, "Public Perspectives on Returning Genetics and Genomics Research Results, " Public Health Genomics 14, no. 6 (2011): 346-355
    • (2011) Public Health Genomics , vol.14 , Issue.6 , pp. 346-355
    • O'Daniel, J.1    Haga, S.B.2
  • 64
    • 35348853843 scopus 로고    scopus 로고
    • "Colorectal Cancer Survivors Undergoing Genetic Testing for Hereditary Nonpolyposis Colorectal Cancer: Motivational Factors and Psychosocial Functioning, "
    • M. J. Esplen et al., "Colorectal Cancer Survivors Undergoing Genetic Testing for Hereditary Nonpolyposis Colorectal Cancer: Motivational Factors and Psychosocial Functioning, " Clinical Genetics 72, no. 5 (2007): 394-401
    • (2007) Clinical Genetics , vol.72 , Issue.5 , pp. 394-401
    • Bui, M.J.1
  • 65
    • 80052516555 scopus 로고    scopus 로고
    • Unpacking the Blockers: Understanding Perceptions and Social Constraints of Health Communication in Hereditary Breast and Ovarian Cancer (HBOC) Susceptibility Families
    • J. A. Peters et al., "Unpacking the Blockers: Understanding Perceptions and Social Constraints of Health Communication in Hereditary Breast and Ovarian Cancer (HBOC) Susceptibility Families, " Journal of Genetic Counseling 20, no. 5 (2011): 450-464;
    • (2011) Journal of Genetic Counseling , vol.20 , Issue.5 , pp. 450-464
    • Peters, J.A.1
  • 66
    • 77953043381 scopus 로고    scopus 로고
    • Women's Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings
    • D. J. MacDonald et al., "Women's Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings, " Journal of Genetic Counseling 19, no. 2 (2010): 148-160;
    • (2010) Journal of Genetic Counseling , vol.19 , Issue.2 , pp. 148-160
    • MacDonald, D.J.1
  • 67
    • 18344381796 scopus 로고    scopus 로고
    • Communication About Genetic Testing in Families of Male BRCA1/2 Carriers and Non-carriers: Patterns, Priorities and Problems
    • N. Hallowell et al., "Communication About Genetic Testing in Families of Male BRCA1/2 Carriers and Non-carriers: Patterns, Priorities and Problems, " Clinical Genetics 67, no. 6 (2005): 492-502;
    • (2005) Clinical Genetics , vol.67 , Issue.6 , pp. 492-502
    • Hallowell, N.1
  • 68
    • 3142767619 scopus 로고    scopus 로고
    • Juggling Roles and Expectations: Dilemmas Faced by Women Talking to Relatives About Cancer and Genetic Testing
    • C. Foster et al., "Juggling Roles and Expectations: Dilemmas Faced by Women Talking to Relatives About Cancer and Genetic Testing, " Psychology & Health 19, no. 4 (2004): 439-455;
    • (2004) Psychology & Health , vol.19 , Issue.4 , pp. 439-455
    • Foster, C.1
  • 69
    • 0037216727 scopus 로고    scopus 로고
    • Communication with Close and Distant Relatives in the Context of Genetic Testing for Hereditary Breast and Ovarian Cancer in Cancer Patients
    • E. Claes et al., "Communication with Close and Distant Relatives in the Context of Genetic Testing for Hereditary Breast and Ovarian Cancer in Cancer Patients, " American Journal of Medical Genetics 116 Part A, no. 1 (2003): 11-19.
    • (2003) American Journal of Medical Genetics , vol.116 , Issue.1 , pp. 11-19
    • Claes, E.1
  • 70
    • 51649083836 scopus 로고    scopus 로고
    • Communicating Genetics Research Results to Families: Problems Arising When the Patient Participant Is Deceased
    • E. Ormondroyd et al., "Communicating Genetics Research Results to Families: Problems Arising When the Patient Participant Is Deceased, " Psychooncology 17, no. 8 (2008): 804-811
    • (2008) Psychooncology , vol.17 , Issue.8 , pp. 804-811
    • Ormondroyd, E.1
  • 71
    • 72249090274 scopus 로고    scopus 로고
    • Characteristics of Health Information Gatherers, Disseminators, and Blockers Within Families at Risk of Hereditary Cancer: Implications for Family Health Communication Interventions
    • L. M. Koehly et al., "Characteristics of Health Information Gatherers, Disseminators, and Blockers Within Families at Risk of Hereditary Cancer: Implications for Family Health Communication Interventions, " American Journal of Public Health 99, no. 12 (2009): 2203-2209
    • (2009) American Journal of Public Health , vol.99 , Issue.12 , pp. 2203-2209
    • Koehly, L.M.1
  • 72
    • 84888130562 scopus 로고    scopus 로고
    • Kinscapes, Timescapes, and Genescapes: Families Living with Genetic Risk
    • P. Atkinson et al., "Kinscapes, Timescapes, and Genescapes: Families Living with Genetic Risk, " Sociology of Health & Illness 35, no. 8 (2013): 1227-1241.
    • (2013) Sociology of Health & Illness , vol.35 , Issue.8 , pp. 1227-1241
    • Atkinson, P.1
  • 73
    • 57349180697 scopus 로고    scopus 로고
    • GINA, the ADA, and Genetic Discrimination in Employment
    • M. A. Rothstein, "GINA, the ADA, and Genetic Discrimination in Employment, " Journal of Law, Medicine & Ethics 36, no. 4 (2008): 837-840.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.4 , pp. 837-840
    • Rothstein, M.A.1
  • 74
    • 84869448616 scopus 로고    scopus 로고
    • Critical Social Theory Approaches to Disclosure of Genomic Incidental Findings
    • J. L. Bevan et al., "Critical Social Theory Approaches to Disclosure of Genomic Incidental Findings, " Nursing Ethics 19, no. 6 (2012): 819-828.
    • (2012) Nursing Ethics , vol.19 , Issue.6 , pp. 819-828
    • Bevan, J.L.1
  • 76
    • 84875248332 scopus 로고    scopus 로고
    • Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules
    • U.S. Department of Health and Human Services, "Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules, " Federal Register 78 (2013): 5566-5702
    • (2013) Federal Register , vol.78 , pp. 5566-5702
  • 77
    • 77957195614 scopus 로고    scopus 로고
    • Rights of the Dead
    • K. R. Smolensky, "Rights of the Dead, " Hofstra Law Review 37, no. 3 (2009): 763-803;
    • (2009) Hofstra Law Review , vol.37 , Issue.3 , pp. 763-803
    • Smolensky, K.R.1
  • 78
    • 0033291432 scopus 로고    scopus 로고
    • Ethical and Legal Aspects of Sperm Retrieval after Death or Persistent Vegetative State
    • C. Strong, "Ethical and Legal Aspects of Sperm Retrieval after Death or Persistent Vegetative State, " Journal of Law, Medicine & Ethics 27, no. 4 (1999): 347-358.
    • (1999) Journal of Law, Medicine & Ethics , vol.27 , Issue.4 , pp. 347-358
    • Strong, C.1
  • 79
    • 84858432183 scopus 로고
    • Posthumous Interests and Posthumous Respect
    • E. Partridge, "Posthumous Interests and Posthumous Respect, " Ethics 91, no. 2 (1981): 243-264.
    • (1981) Ethics , vol.91 , Issue.2 , pp. 243-264
    • Partridge, E.1
  • 80
    • 3042525453 scopus 로고    scopus 로고
    • An Ethical Framework for Thinking about the Clinical Care that Researchers Owe Their Subjects
    • H. S. Richardson and L. Belsky, "An Ethical Framework for Thinking about the Clinical Care that Researchers Owe Their Subjects, " Hastings Center Report 34, no. 1 (2004): 25-33.
    • (2004) Hastings Center Report , vol.34 , Issue.1 , pp. 25-33
    • Richardson, H.S.1    Belsky, L.2
  • 81
    • 84873564885 scopus 로고    scopus 로고
    • Return of Research Results from Genomic Biobanks: Cost Matters
    • M. J. Bledsoe et al., "Return of Research Results from Genomic Biobanks: Cost Matters, " Genetics in Medicine 15, no. 2 (2013): 103-105
    • (2013) Genetics in Medicine , vol.15 , Issue.2 , pp. 103-105
    • Bledsoe, M.J.1
  • 82
    • 77955084846 scopus 로고
    • Regents of the University of California
    • Cal. 3d 425 (Cal.
    • Tarasoff v. Regents of the University of California, 17 Cal. 3d 425 (Cal. 1976).
    • (1976) , vol.17
    • Tarasoff, V.1
  • 83
    • 84884265464 scopus 로고    scopus 로고
    • What Does the Duty to Warn Require?
    • S. K. Shah et al., "What Does the Duty to Warn Require?" American Journal of Bioethics 13, no. 10 (2013): 62-63
    • (2013) American Journal of Bioethics , vol.13 , Issue.10 , pp. 62-63
    • Shah, S.K.1
  • 84
    • 84902271056 scopus 로고    scopus 로고
    • Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices in Between
    • G.P. Jarvik et al., "Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices in Between, " American Journal of Human Genetics 94, no. 6 (2014): 818-826
    • (2014) American Journal of Human Genetics , vol.94 , Issue.6 , pp. 818-826
    • Jarvik, G.P.1
  • 85
    • 84890081851 scopus 로고    scopus 로고
    • Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts
    • (last visited September 1, 2015)
    • Presidential Commission for the Study of Bioethical Issues, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts (2013), available at (last visited September 1, 2015)
    • (2013)
  • 86
    • 84859595869 scopus 로고    scopus 로고
    • The Legal Risks of Returning Results of Genomics Research
    • E. W. Clayton and A. L. McGuire, "The Legal Risks of Returning Results of Genomics Research, " Genetics in Medicine 14, no. 4 (2012): 473-477
    • (2012) Genetics in Medicine , vol.14 , Issue.4 , pp. 473-477
    • Clayton, E.W.1    McGuire, A.L.2
  • 87
    • 84878139602 scopus 로고    scopus 로고
    • Communication of Results and Disclosure of Incidental Findings in Longitudinal Paediatric Research
    • V. Anastasova et al., "Communication of Results and Disclosure of Incidental Findings in Longitudinal Paediatric Research, " Pediatric Allergy and Immunology 24, no. 4 (2013): 389-394
    • (2013) Pediatric Allergy and Immunology , vol.24 , Issue.4 , pp. 389-394
    • Anastasova, V.1
  • 88
    • 84944685177 scopus 로고    scopus 로고
    • U.S. Department of Health and Human Services, Does the HIPAA Privacy Rule Allow Parents the Right to See Their Children's Medical Records?
    • (last visited September 1, 2015).
    • Office for Civil Rights, U.S. Department of Health and Human Services, Does the HIPAA Privacy Rule Allow Parents the Right to See Their Children's Medical Records? available at (last visited September 1, 2015).
  • 89
    • 84897678644 scopus 로고    scopus 로고
    • In the Absence of Evidentiary Harm, Existing Societal Norms Regarding Parental Authority Should Prevail
    • K. A. Strong et al., "In the Absence of Evidentiary Harm, Existing Societal Norms Regarding Parental Authority Should Prevail, " American Journal of Bioethics 14, no. 3 (2014): 24-26
    • (2014) American Journal of Bioethics , vol.14 , Issue.3 , pp. 24-26
    • Strong, K.A.1
  • 90
    • 79959276553 scopus 로고    scopus 로고
    • Deploying Whole Genome Sequencing in Clinical Practice and Public Health: Meeting the Challenge One Bin at a Time
    • J. S. Berg, M. J. Khoury, and J. P. Evans, "Deploying Whole Genome Sequencing in Clinical Practice and Public Health: Meeting the Challenge One Bin at a Time, " Genetics in Medicine 13, no. 6 (2011): 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


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.