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dc.creatorKodish, Ericen
dc.creatorLantos, Johnen
dc.creatorStocking, Carolen
dc.creatorSinger, Peter A.en
dc.creatorSiegler, Marken
dc.creatorJohnson, F. Leonarden
dc.date.accessioned2015-05-05T18:29:41Zen
dc.date.available2015-05-05T18:29:41Zen
dc.date.created1991-11-07en
dc.date.issued1991-11-07en
dc.identifier10.1056/NEJM199111073251905en
dc.identifier.bibliographicCitationNew England Journal of Medicine. 1991 Nov 7; 325(19): 1349-1353.en
dc.identifier.issn0028-4793en
dc.identifier.urihttp://worldcatlibraries.org/registry/gateway?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Bone+Marrow+Transplantation+for+Sickle+Cell+Disease:+a+Study+Of+parents'+Decisions&title=New+England+Journal+of+Medicine.++&volume=325&issue=19&pages=1349-1353&date=1991&au=Kodish,+Ericen
dc.identifier.urihttp://dx.doi.org/10.1056/NEJM199111073251905en
dc.identifier.urihttp://hdl.handle.net/10822/735714en
dc.description.abstractBackground: Bone marrow transplantation has been shown to cure sickle cell disease, but it carries a 15 percent mortality risk. To determine whether parents would accept this risk to cure their children of sickle cell disease, we interviewed parents of children with sickle cell disease who were being followed in a university hospital clinic. Methods: We assessed parents' attitudes by using questions based on the standard reference-gamble paradigm. After we gave them descriptions of bone marrow transplantation and graft-versus-host disease (GVHD), the parents were presented with a series of hypothetical situations. In the first situation, bone marrow transplantation was described as offering certain (100 percent) survival with cure of sickle cell disease. In subsequent descriptions, the mortality rate associated with bone marrow transplantation was increased by 5 percent increments. The parents indicated the highest mortality risk at which they would consent to the procedure in order to cure their children. Results: In order to obtain a cure for their children, 36 of 67 parents (54 percent) were willing to accept some risk of short-term mortality, 25 of 67 (37 percent) were willing to accept at least the 15 percent short-term mortality risk we estimate to be the current figure for bone marrow transplantation, and 8 of 67 (12 percent) were willing to accept a short-term mortality risk of 50 percent or more. Nine parents (13 percent) said they would accept both a mortality risk of 15 percent or more and an additional 15 percent risk of GVHD. The parents' decisions were not related to the clinical severity of their children's illness. Conclusions: At current rates of mortality and morbidity with bone marrow transplantation, a substantial minority of the parents of children with sickle cell disease may consent to bone marrow transplantation for their children. Parental attitudes should be factored into decisions about whether to offer bone marrow transplantation to children with sickle cell disease.en
dc.formatArticleen
dc.languageenen
dc.sourceBRL:KIE/34628en
dc.subjectAdolescentsen
dc.subjectAttitudesen
dc.subjectBone Marrowen
dc.subjectChildrenen
dc.subjectConsenten
dc.subjectDecision Makingen
dc.subjectDisclosureen
dc.subjectDiseaseen
dc.subjectEthicsen
dc.subjectEthics Committeesen
dc.subjectFemalesen
dc.subjectHuman Experimentationen
dc.subjectInformed Consenten
dc.subjectIllnessen
dc.subjectMalesen
dc.subjectMethodsen
dc.subjectMinorsen
dc.subjectMorbidityen
dc.subjectMortalityen
dc.subjectParental Consenten
dc.subjectParentsen
dc.subjectResearchen
dc.subjectResearch Ethicsen
dc.subjectResearch Ethics Committeesen
dc.subjectRisken
dc.subjectSickle Cell Anemiaen
dc.subjectSocioeconomic Factorsen
dc.subjectSurveyen
dc.subjectTissue Transplantationen
dc.subjectTransplantationen
dc.titleBone Marrow Transplantation for Sickle Cell Disease: A Study of Parents' Decisionsen
dc.provenanceDigital citation created by the National Reference Center for Bioethics Literature at Georgetown University for the BIOETHICSLINE database, part of the Kennedy Institute of Ethics' Bioethics Information Retrieval Project funded by the United States National Library of Medicine.en
dc.provenanceDigital citation migrated from OpenText LiveLink Discovery Server database named NBIO hosted by the Bioethics Research Library to the DSpace collection BioethicsLine hosted by Georgetown University.en


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