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Volumn 19, Issue 11, 2011, Pages 1127-1132

Opinions and intentions of parents of an autistic child toward genetic research results: Two typical profiles

Author keywords

disclosure; genetic research results; postal survey; research ethics; research participants

Indexed keywords

ADULT; ARTICLE; FEMALE; GENETICS; HEALTH CARE COST; HUMAN; INFANTILE AUTISM; MALE; MASS COMMUNICATION; MEDICAL ETHICS; PARENTAL ATTITUDE; PRIORITY JOURNAL; QUESTIONNAIRE;

EID: 80054820783     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2011.106     Document Type: Article
Times cited : (20)

References (24)
  • 1
    • 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 RR, McGuire M, Sharp RR 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    McGuire, M.2    Sharp, R.R.3
  • 3
    • 79959252489 scopus 로고    scopus 로고
    • Not so simple: A quasi-experimental study of how researchers adjudicate genetic research results
    • e-pub ahead of print 16 March 2011, doi:10.1038/ejhg2011.34
    • Hayeems RZ, Miller FA, Li L, Bytautas JP: Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results. Eur J Hum Genet 2011; e-pub ahead of print 16 March 2011; doi:10.1038/ejhg2011. 34
    • (2011) Eur J Hum Genet
    • Hayeems, R.Z.1    Miller, F.A.2    Li, L.3    Bytautas, J.P.4
  • 4
    • 33750388916 scopus 로고    scopus 로고
    • The emergence of an ethical duty to disclose genetic research results: International perspectives
    • DOI 10.1038/sj.ejhg.5201690, PII 5201690
    • Knoppers BM, Joly Y, Simard J et al: The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet 2006; 14: 1170-1178 (Pubitemid 44642582)
    • (2006) European Journal of Human Genetics , vol.14 , Issue.11 , pp. 1170-1178
    • Knoppers, B.M.1    Joly, Y.2    Simard, J.3    Durocher, F.4
  • 5
    • 33750631748 scopus 로고    scopus 로고
    • Disclosing individual genetic results to research participants
    • DOI 10.1080/15265160600934772, PII K2052P45R4645537
    • Ravitsky V, Wilfond BS: Disclosing individual genetic results to research participants. Am J Bioeth 2006; 6: 8-17 (Pubitemid 44691474)
    • (2006) American Journal of Bioethics , vol.6 , Issue.6 , pp. 8-17
    • Ravitsky, V.1    Wilfond, B.S.2
  • 6
    • 79151476271 scopus 로고    scopus 로고
    • Disclosure of individual genetic data to research participants: The debate reconsidered
    • Bredenoord AL, Kroes HY, Cuppen E et al: Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet 2010; 27: 41-47
    • (2010) Trends Genet , vol.27 , pp. 41-47
    • Bredenoord, A.L.1    Kroes, H.Y.2    Cuppen, E.3
  • 7
    • 33750618070 scopus 로고    scopus 로고
    • Tiered disclosure options promote the autonomy and well-being of research subjects
    • Rothstein MA: Tiered disclosure options promote the autonomy and well-being of research subjects. Am J Bioeth 2006; 6: 20
    • (2006) Am J Bioeth , vol.6 , pp. 20
    • Rothstein, M.A.1
  • 8
    • 23344451021 scopus 로고    scopus 로고
    • Disclosing individual results of clinical research: Implications of respect for participants
    • DOI 10.1001/jama.294.6.737
    • Shalowitz DI, Miller FG: Disclosing individual results of clinical research: implications of respect for participants. JAMA 2005; 294: 737-740 (Pubitemid 41159294)
    • (2005) Journal of the American Medical Association , vol.294 , Issue.6 , pp. 737-740
    • Shalowitz, D.I.1    Miller, F.G.2
  • 9
    • 57349167685 scopus 로고    scopus 로고
    • Public expectations for return of results from largecohort genetic research
    • Murphy J, Scott J, Kaufman D et al: Public expectations for return of results from largecohort genetic research. Am J Bioeth 2008; 8: 36-43
    • (2008) Am J Bioeth , vol.8 , pp. 36-43
    • Murphy, J.1    Scott, J.2    Kaufman, D.3
  • 10
    • 23944495775 scopus 로고    scopus 로고
    • Avoiding versus seeking: The relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts
    • Case DO, Andrews JE, Johnson JD et al: Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. J Med Libr Assoc 2005; 93: 353-362 (Pubitemid 41702493)
    • (2005) Journal of the Medical Library Association , vol.93 , Issue.3 , pp. 353-362
    • Case, D.O.1    Andrews, J.E.2    Johnson, J.D.3    Allard, S.L.4
  • 11
    • 31644443407 scopus 로고    scopus 로고
    • Receiving a summary of the results of a trial: Qualitative study of participants views. Qualitative study of participants views
    • Dixon-Woods M, Jackson C, Windridge KC et al: Receiving a summary of the results of a trial: qualitative study of participants views. Qualitative study of participants views. BMJ 2006; 332: 206-210
    • (2006) BMJ , vol.332 , pp. 206-210
    • Dixon-Woods, M.1    Jackson, C.2    Windridge, K.C.3
  • 12
    • 33750624177 scopus 로고    scopus 로고
    • Undesirable implications of disclosing individual genetic results to research participants
    • DOI 10.1080/15265160600935811, PII NPK674654V3477P4
    • Meltzer LA: Undesirable implications of disclosing individual genetic results to research participants. Am J Bioeth 2006; 6: 28-30 (Pubitemid 44691480)
    • (2006) American Journal of Bioethics , vol.6 , Issue.6 , pp. 28-30
    • Meltzer, L.A.1
  • 13
    • 2342644002 scopus 로고    scopus 로고
    • Considerations and costs of disclosing study findings to research participants
    • DOI 10.1503/cmaj.1031668
    • Fernandez CV, Skedgel C, Weijer C: Considerations and costs of disclosing study findings to research participants. CMAJ 2004; 170: 1417-1419 (Pubitemid 38594635)
    • (2004) Canadian Medical Association Journal , vol.170 , Issue.9 , pp. 1417-1419
    • Fernandez, C.V.1    Skedgel, C.2    Weijer, C.3
  • 14
    • 40649092107 scopus 로고    scopus 로고
    • Duty to disclose what? Querying the putative obligation to return research results to participants
    • Miller F, Christensen R, Giacomini M et al: Duty to disclose what? Querying the putative obligation to return research results to participants. J Med Ethics 2008; 34: 210-213
    • (2008) J Med Ethics , vol.34 , pp. 210-213
    • Miller, F.1    Christensen, R.2    Giacomini, M.3
  • 15
    • 0142149999 scopus 로고    scopus 로고
    • Informing study participants of research results: An ethical imperative
    • Fernandez CV, Kodish E, Weijer C: Informing study participants of research results: an ethical imperative. IRB 2003; 25: 12-19
    • (2003) IRB , vol.25 , pp. 12-19
    • Fernandez, C.V.1    Kodish, E.2    Weijer, C.3
  • 16
    • 57349105254 scopus 로고    scopus 로고
    • Public expectations for return of results- Time to stop being paternalistic
    • Fernandez CV: Public expectations for return of results- Time to stop being paternalistic. Am J Bioeth 2008; 8: 46-48
    • (2008) Am J Bioeth , vol.8 , pp. 46-48
    • Fernandez, C.V.1
  • 18
    • 40849106526 scopus 로고    scopus 로고
    • When research seems like clinical care: A qualitative study of the communication of individual cancer genetic research results
    • Miller F, Giacomini M, Ahern C et al: When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results. BMC Med Ethics 2008; 9: 4
    • (2008) BMC Med Ethics , vol.9 , pp. 4
    • Miller, F.1    Giacomini, M.2    Ahern, C.3
  • 19
    • 29944440965 scopus 로고    scopus 로고
    • Implications of disclosing individual results of clinical research [9]
    • DOI 10.1001/jama.295.1.37-a
    • Clayton EW, Ross LF: Implications of disclosing individual results of clinical research. JAMA 2006; 295: 37 (Pubitemid 43042684)
    • (2006) Journal of the American Medical Association , vol.295 , Issue.1 , pp. 37
    • Clayton, E.W.1    Ross, L.F.2
  • 20
    • 20644433335 scopus 로고    scopus 로고
    • Public health and genetics- A dangerous combination?
    • Brand A: Public health and genetics- a dangerous combination? Eur J Public Health 2005; 15: 113-116
    • (2005) Eur J Public Health , vol.15 , pp. 113-116
    • Brand, A.1
  • 21
    • 33646254125 scopus 로고    scopus 로고
    • Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group
    • Bookman EB, Langehorne AA, Eckfeldt JH et al: Reporting genetic results in research studies: summary and recommendations of an NHLBI working group. Am J Med Genet A 2006; 140A: 1033-1040
    • (2006) Am J Med Genet A , vol.140 A , pp. 1033-1040
    • Bookman, E.B.1    Langehorne, A.A.2    Eckfeldt, J.H.3
  • 22
    • 69749091289 scopus 로고    scopus 로고
    • Is it ethical to deny genetic research participants individualised results?
    • Affleck P: Is it ethical to deny genetic research participants individualised results? J Med Ethics 2009; 35: 209-213
    • (2009) J Med Ethics , vol.35 , pp. 209-213
    • Affleck, P.1
  • 24
    • 0038182625 scopus 로고    scopus 로고
    • Disclosure of the right of research participants to receive research results : An analysis of consent forms in the Childrens Oncology Group
    • Fernandez CV, Kodish E, Taweel S et al: Disclosure of the right of research participants to receive research results : An analysis of consent forms in the Childrens Oncology Group. Cancer 2003; 97: 2904-2908
    • (2003) Cancer , vol.97 , pp. 2904-2908
    • Fernandez, C.V.1    Kodish, E.2    Taweel, S.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.