메뉴 건너뛰기




Volumn 21, Issue 3, 2015, Pages 148-153

Postmortem disclosure of genetic information to family members: Active or passive?

Author keywords

Ethics; Family members; Genetic information; Next generation sequencing; Postmortem disclosure

Indexed keywords

BENEFICENCE; CONFIDENTIALITY; CONSENSUS; DEATH; DNA SEQUENCE; EXOME; GENETIC COUNSELING; GENETIC DISORDER; GENETIC INFORMATION; GENETIC PRIVACY; GENETIC RISK; HUMAN; HUMAN GENOME; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MEDICAL ETHICS; MEDICAL INFORMATION; NEXT GENERATION SEQUENCING; NONMALEFICENCE; PERSONAL AUTONOMY; PHYSICIAN; RELATIVE; REVIEW; FAMILY; POSTMORTEM CHANGE;

EID: 84924557599     PISSN: 14714914     EISSN: 1471499X     Source Type: Journal    
DOI: 10.1016/j.molmed.2015.01.002     Document Type: Review
Times cited : (22)

References (50)
  • 1
    • 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., et al. Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time. Genet. Med. 2011, 13:499-504.
    • (2011) Genet. Med. , vol.13 , pp. 499-504
    • Berg, J.S.1
  • 2
    • 37749031255 scopus 로고    scopus 로고
    • Next-generation sequencing transforms today's biology
    • Schuster S.C. Next-generation sequencing transforms today's biology. Nat. Methods 2008, 5:16-18.
    • (2008) Nat. Methods , vol.5 , pp. 16-18
    • Schuster, S.C.1
  • 3
    • 84890858362 scopus 로고    scopus 로고
    • Reporting results from whole-genome and whole-exome sequencing in clinical practice: a proposal for Canada?
    • Zawati M.H., et al. Reporting results from whole-genome and whole-exome sequencing in clinical practice: a proposal for Canada?. J. Med. Genet. 2014, 51:68-70.
    • (2014) J. Med. Genet. , vol.51 , pp. 68-70
    • Zawati, M.H.1
  • 4
    • 79151476271 scopus 로고    scopus 로고
    • Disclosure of individual genetic data to research participants: the debate reconsidered
    • Bredenoord A.L., et al. Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet. 2011, 27:41-47.
    • (2011) Trends Genet. , vol.27 , pp. 41-47
    • Bredenoord, A.L.1
  • 5
    • 84881420673 scopus 로고    scopus 로고
    • Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics
    • Van El C.G., et al. Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics. Eur. J. Hum. genet. 2013, 21:580-584.
    • (2013) Eur. J. Hum. genet. , vol.21 , pp. 580-584
    • Van El, C.G.1
  • 6
    • 84880482533 scopus 로고    scopus 로고
    • Ethical, legal and counseling challenges surrounding the return of genetic results in oncology
    • Lolkema M.P., et al. Ethical, legal and counseling challenges surrounding the return of genetic results in oncology. J. Clin. Oncol. 2013, 31:1842-1848.
    • (2013) J. Clin. Oncol. , vol.31 , pp. 1842-1848
    • Lolkema, M.P.1
  • 7
    • 84866439499 scopus 로고    scopus 로고
    • Disclosing individual genetic research results to deceased participants' relatives by means of a qualified disclosure policy
    • Bredenoord A.L., van Delden J.J.M. Disclosing individual genetic research results to deceased participants' relatives by means of a qualified disclosure policy. Am. J. Bioeth. 2012, 12:10-12.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 10-12
    • 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
    • Chan B., et al. Genomic inheritances: disclosing individual research results from whole-exome sequencing to deceased participants' relatives. Am. J. Bioeth. 2012, 12:1-8.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 1-8
    • Chan, B.1
  • 9
    • 84891709193 scopus 로고    scopus 로고
    • Communication of clinically useful next-generation sequencing results to at-risk relatives of deceased research participants: towards active disclosure?
    • Battistuzzi L., et al. Communication of clinically useful next-generation sequencing results to at-risk relatives of deceased research participants: towards active disclosure?. J. Clin. Oncol. 2013, 31:4164-4165.
    • (2013) J. Clin. Oncol. , vol.31 , pp. 4164-4165
    • Battistuzzi, L.1
  • 10
    • 84891721337 scopus 로고    scopus 로고
    • Reply to L. Battistuzzi et al.
    • Lolkema M.P., et al. Reply to L. Battistuzzi et al. J. Clin. Oncol. 2013, 31:4165-4166.
    • (2013) J. Clin. Oncol. , vol.31 , pp. 4165-4166
    • Lolkema, M.P.1
  • 11
    • 79960834031 scopus 로고    scopus 로고
    • Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy
    • Bredenoord A.L., et al. Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy. Hum. Mutat. 2011, 32:861-867.
    • (2011) Hum. Mutat. , vol.32 , pp. 861-867
    • Bredenoord, A.L.1
  • 12
    • 84924542729 scopus 로고    scopus 로고
    • Uses of banked DNA
    • World Health Organization, D. Wertz (Ed.)
    • Wertz D., et al. Uses of banked DNA. Review of Ethical Issues in Medical Genetics 2003, 85-87. World Health Organization. D. Wertz (Ed.).
    • (2003) Review of Ethical Issues in Medical Genetics , pp. 85-87
    • Wertz, D.1
  • 13
    • 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., et al. 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. 2010, 3:574-580.
    • (2010) Circ. Cardiovasc. Genet. , vol.3 , pp. 574-580
    • Fabsitz, R.R.1
  • 14
    • 33750631748 scopus 로고    scopus 로고
    • Disclosing individual genetic results to research participants
    • Ravitsky V., Wilfond S. Disclosing individual genetic results to research participants. Am. J. Bioeth. 2006, 6:8-17.
    • (2006) Am. J. Bioeth. , vol.6 , pp. 8-17
    • Ravitsky, V.1    Wilfond, S.2
  • 15
    • 84866456716 scopus 로고    scopus 로고
    • The ever-evolving concept of clinical significance and the potential for sins of omission in genetic research
    • Costain G., Bassett A.S. The ever-evolving concept of clinical significance and the potential for sins of omission in genetic research. Am. J. Bioeth. 2012, 12:22-24.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 22-24
    • Costain, G.1    Bassett, A.S.2
  • 16
    • 84860783704 scopus 로고    scopus 로고
    • Caregiver and adult patient perspectives on the importance of diagnosis of 22q11.2 deletion syndrome
    • Costain G., et al. Caregiver and adult patient perspectives on the importance of diagnosis of 22q11.2 deletion syndrome. J. Intellectuel. Disabil. Res. 2012, 56:641-651.
    • (2012) J. Intellectuel. Disabil. Res. , vol.56 , pp. 641-651
    • Costain, G.1
  • 17
    • 84866454833 scopus 로고    scopus 로고
    • Disclosing results to genomic research participants: differences that matter
    • Blasimme A., et al. Disclosing results to genomic research participants: differences that matter. Am. J. Bioeth. 2012, 12:20-22.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 20-22
    • Blasimme, A.1
  • 18
    • 84866448330 scopus 로고    scopus 로고
    • Beneficence, clinical urgency, and the return of individual research results to relatives
    • Fullerton S.M., et al. Beneficence, clinical urgency, and the return of individual research results to relatives. Am. J. Bioeth. 2012, 12:9-10.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 9-10
    • Fullerton, S.M.1
  • 19
    • 4544245238 scopus 로고    scopus 로고
    • The 'duty to warn' a patient's family members about hereditary disease risk
    • Offit K., et al. The 'duty to warn' a patient's family members about hereditary disease risk. J. Am. Med. Assoc. 2004, 292:1469-1473.
    • (2004) J. Am. Med. Assoc. , vol.292 , pp. 1469-1473
    • Offit, K.1
  • 20
    • 84866441332 scopus 로고    scopus 로고
    • Risks to relatives in genomic research: a duty to warn?
    • Bombard Y., et al. Risks to relatives in genomic research: a duty to warn?. Am. J. Bioeth. 2012, 12:12-14.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 12-14
    • Bombard, Y.1
  • 21
    • 84884265464 scopus 로고    scopus 로고
    • What does the duty to warn require?
    • Shah S.K., et al. What does the duty to warn require?. Am. J. Bioeth. 2013, 13:62-63.
    • (2013) Am. J. Bioeth. , vol.13 , pp. 62-63
    • Shah, S.K.1
  • 22
    • 84980502304 scopus 로고
    • Predictive DNA testing and prophylactic thyroidectomy in patients at risk for multiple endocrine neoplasia type 2a
    • Wells S.A., et al. Predictive DNA testing and prophylactic thyroidectomy in patients at risk for multiple endocrine neoplasia type 2a. N. Engl. J. Med. 1994, 331:828-835.
    • (1994) N. Engl. J. Med. , vol.331 , pp. 828-835
    • Wells, S.A.1
  • 23
    • 84866454093 scopus 로고    scopus 로고
    • Disclosure/disruption: considering why not to disclose genetic information after death
    • Galvin K., Clayman M.L. Disclosure/disruption: considering why not to disclose genetic information after death. Am. J. Bioeth. 2012, 12:14-16.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 14-16
    • Galvin, K.1    Clayman, M.L.2
  • 24
    • 84884226780 scopus 로고    scopus 로고
    • Should researchers disclose results to descendants?
    • Rothstein M.A. Should researchers disclose results to descendants?. Am. J. Bioeth. 2013, 10:64-65.
    • (2013) Am. J. Bioeth. , vol.10 , pp. 64-65
    • Rothstein, M.A.1
  • 25
    • 81255208683 scopus 로고    scopus 로고
    • The return of results of deceased research participants
    • Tassé A.M. The return of results of deceased research participants. J. Law Med. Ethics 2011, 39:621-630.
    • (2011) J. Law Med. Ethics , vol.39 , pp. 621-630
    • Tassé, A.M.1
  • 26
    • 84866436374 scopus 로고    scopus 로고
    • Rethinking clinical risk for DNA sequencing
    • May T. Rethinking clinical risk for DNA sequencing. Am. J. Bioeth. 2012, 12:24-26.
    • (2012) Am. J. Bioeth. , vol.12 , pp. 24-26
    • May, T.1
  • 27
    • 77952101271 scopus 로고    scopus 로고
    • Challenges in the clinical application of whole-genome sequencing
    • Ormond K.E., et al. Challenges in the clinical application of whole-genome sequencing. Lancet 2010, 375:1749-1751.
    • (2010) Lancet , vol.375 , pp. 1749-1751
    • Ormond, K.E.1
  • 28
    • 81555203460 scopus 로고    scopus 로고
    • Motivators for participation in a whole-genome sequencing study: implications for translational genomics research
    • Facio F.M., et al. 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
  • 29
    • 0037603467 scopus 로고    scopus 로고
    • The new genetics and its consequences for family, kinship, medicine and medical genetics
    • Finkler K., et al. The new genetics and its consequences for family, kinship, medicine and medical genetics. Soc. Sci. Med. 2003, 57:403-421.
    • (2003) Soc. Sci. Med. , vol.57 , pp. 403-421
    • Finkler, K.1
  • 30
    • 77954655906 scopus 로고    scopus 로고
    • The Havasupai Indian tribe case - lessons for research involving stored biological samples
    • Mello M., Wolf L. The Havasupai Indian tribe case - lessons for research involving stored biological samples. N. Engl. J. Med. 2010, 363:204-207.
    • (2010) N. Engl. J. Med. , vol.363 , pp. 204-207
    • Mello, M.1    Wolf, L.2
  • 31
    • 0342898650 scopus 로고
    • Genetic testing, individual rights, and the common good
    • Kluwer Academic Publishers, C.S. Campbell, B.A. Lustig (Eds.)
    • Jonsen A.R. Genetic testing, individual rights, and the common good. Duties to Others 1994, 271-291. Kluwer Academic Publishers. C.S. Campbell, B.A. Lustig (Eds.).
    • (1994) Duties to Others , pp. 271-291
    • Jonsen, A.R.1
  • 32
    • 0026235566 scopus 로고
    • Ethical issues in clinical genetics: a report of a Joint Working Party of the College Committee on Ethical Issues in Medicine and the College Committee on Clinical Genetics
    • Richards J.R., Bobrow M. Ethical issues in clinical genetics: a report of a Joint Working Party of the College Committee on Ethical Issues in Medicine and the College Committee on Clinical Genetics. J. R. Coll. Physicians Lond. 1991, 25:284-288.
    • (1991) J. R. Coll. Physicians Lond. , vol.25 , pp. 284-288
    • Richards, J.R.1    Bobrow, M.2
  • 33
    • 84924629385 scopus 로고    scopus 로고
    • Confidentiality in the context of genetic testing
    • John Libbey Eurotext, A. de Bouvet (Ed.)
    • Dierickx K. Confidentiality in the context of genetic testing. Questions Éthiques en Médecine Prédictive 2006, 29-40. John Libbey Eurotext. A. de Bouvet (Ed.).
    • (2006) Questions Éthiques en Médecine Prédictive , pp. 29-40
    • Dierickx, K.1
  • 34
    • 6444221054 scopus 로고    scopus 로고
    • The right not to know: an autonomy based approach
    • Andorno R. The right not to know: an autonomy based approach. J. Med. Ethics 2004, 30:435-440.
    • (2004) J. Med. Ethics , vol.30 , pp. 435-440
    • Andorno, R.1
  • 35
    • 84961290283 scopus 로고    scopus 로고
    • Recognizing the right not to know: conceptual, professional, and legal implications
    • Laurie G. Recognizing the right not to know: conceptual, professional, and legal implications. J. Law Med. Ethics 2014, 42:53-63.
    • (2014) J. Law Med. Ethics , vol.42 , pp. 53-63
    • Laurie, G.1
  • 36
    • 41449083650 scopus 로고    scopus 로고
    • Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations
    • Finlay E., et al. Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet. Test 2008, 12:81-91.
    • (2008) Genet. Test , vol.12 , pp. 81-91
    • Finlay, E.1
  • 37
    • 0033748806 scopus 로고    scopus 로고
    • Factors associated with decisions about clinical BRCA 1/2 testing
    • Armstrong K., et al. Factors associated with decisions about clinical BRCA 1/2 testing. Cancer Epidemiol. Biomarkers Prev. 2000, 9:1251-1254.
    • (2000) Cancer Epidemiol. Biomarkers Prev. , vol.9 , pp. 1251-1254
    • Armstrong, K.1
  • 38
    • 33744719743 scopus 로고    scopus 로고
    • Uptake rates for breast cancer genetic testing: a systematic review
    • Ropka M.E., et al. Uptake rates for breast cancer genetic testing: a systematic review. Cancer Epidemiol. Biomarkers Prev. 2006, 15:840-855.
    • (2006) Cancer Epidemiol. Biomarkers Prev. , vol.15 , pp. 840-855
    • Ropka, M.E.1
  • 39
    • 0035985760 scopus 로고    scopus 로고
    • Unexpected findings in identifiable stored blood samples after analysis without consent: moral arguments for and against disclosure
    • Verweij M.F., Hamel B.C. Unexpected findings in identifiable stored blood samples after analysis without consent: moral arguments for and against disclosure. Genet. Couns. 2002, 12:115-121.
    • (2002) Genet. Couns. , vol.12 , pp. 115-121
    • Verweij, M.F.1    Hamel, B.C.2
  • 40
    • 0011928405 scopus 로고
    • On harming the dead
    • Callahan J.C. On harming the dead. Ethics 1987, 97:341-352.
    • (1987) Ethics , vol.97 , pp. 341-352
    • Callahan, J.C.1
  • 41
    • 78549282384 scopus 로고    scopus 로고
    • The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL study
    • Ashida S.L., et al. The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL study. Eur. J. Hum. Genet. 2010, 18:1296-1301.
    • (2010) Eur. J. Hum. Genet. , vol.18 , pp. 1296-1301
    • Ashida, S.L.1
  • 42
    • 79851493086 scopus 로고    scopus 로고
    • Effect of direct-to-consumer genomewide profiling to assess disease risk
    • Bloss C.S., et al. Effect of direct-to-consumer genomewide profiling to assess disease risk. N. Engl. J. Med. 2011, 364:524-534.
    • (2011) N. Engl. J. Med. , vol.364 , pp. 524-534
    • Bloss, C.S.1
  • 43
    • 68149182193 scopus 로고    scopus 로고
    • Personal autonomy, posthumous harm, and presumed consent policies for organ procurement
    • Taylor J.S. Personal autonomy, posthumous harm, and presumed consent policies for organ procurement. Public Affairs Quart. 2006, 20:381-404.
    • (2006) Public Affairs Quart. , vol.20 , pp. 381-404
    • Taylor, J.S.1
  • 44
    • 78650509844 scopus 로고    scopus 로고
    • Opening up the conversation on genetics and genomics in families: the space for communication scholars
    • Routledge, C.S. Beck (Ed.)
    • Galvin K.M., Grill L.H. Opening up the conversation on genetics and genomics in families: the space for communication scholars. Communication Yearbook 33 2009, 213-257. Routledge. C.S. Beck (Ed.).
    • (2009) Communication Yearbook 33 , pp. 213-257
    • Galvin, K.M.1    Grill, L.H.2
  • 45
    • 0031911191 scopus 로고    scopus 로고
    • Professional disclosure of familial genetic information
    • Statement A.S.H.G. Professional disclosure of familial genetic information. Am. J. Hum. Genet. 1998, 62:474-483.
    • (1998) Am. J. Hum. Genet. , vol.62 , pp. 474-483
    • Statement, A.S.H.G.1
  • 46
    • 84867707134 scopus 로고    scopus 로고
    • Next-generation sequencing in the clinic: are we ready?
    • Biesecker L.G., et al. Next-generation sequencing in the clinic: are we ready?. Nat. Rev. Genet. 2012, 13:818-824.
    • (2012) Nat. Rev. Genet. , vol.13 , pp. 818-824
    • Biesecker, L.G.1
  • 47
    • 79955467279 scopus 로고    scopus 로고
    • Disclosure of individual research results in clinico-genomic trials: challenges, classification and criteria for decision-making
    • Kollek R., Petersen I. Disclosure of individual research results in clinico-genomic trials: challenges, classification and criteria for decision-making. J. Med. Ethics 2011, 37:271-275.
    • (2011) J. Med. Ethics , vol.37 , pp. 271-275
    • Kollek, R.1    Petersen, I.2
  • 48
    • 84859583108 scopus 로고    scopus 로고
    • Opportunities and challenges for the integration of massively parallel genomic sequencing into clinical practice: lessons from the ClinSeq project
    • Biesecker L.G. Opportunities and challenges for the integration of massively parallel genomic sequencing into clinical practice: lessons from the ClinSeq project. Genet. Med. 2012, 14:393-398.
    • (2012) Genet. Med. , vol.14 , pp. 393-398
    • Biesecker, L.G.1
  • 49
    • 84859595869 scopus 로고    scopus 로고
    • The legal risks of returning results of genomics research
    • Clayton E.W., McGuire A.L. The legal risks of returning results of genomics research. Genet. Med. 2012, 14:473-477.
    • (2012) Genet. Med. , vol.14 , pp. 473-477
    • Clayton, E.W.1    McGuire, A.L.2
  • 50
    • 85015592230 scopus 로고
    • Guilty bystander? On the legitimacy of duty to rescue statutes
    • McIntyre A. Guilty bystander? On the legitimacy of duty to rescue statutes. Philos. Public Affairs 1994, 23:157-191.
    • (1994) Philos. Public Affairs , vol.23 , pp. 157-191
    • McIntyre, A.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.