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dc.creatorHull, Sara Chandrosen
dc.creatorSharp, Richard R.en
dc.creatorBotkin, Jeffrey R.en
dc.creatorBrown, Marken
dc.creatorHughes, Marken
dc.creatorSugarman, Jeremyen
dc.creatorSchwinn, Debraen
dc.creatorSankar, Pamelaen
dc.creatorBolcic-Jankovic, Draganaen
dc.creatorClarridge, Brian R.en
dc.creatorWilfond, Benjamin S.en
dc.date.accessioned2011-07-12T18:21:49Zen
dc.date.available2011-07-12T18:21:49Zen
dc.date.created2008-10en
dc.date.issued2008-10en
dc.identifier1536-0075en
dc.identifierhttp://bioethics.neten
dc.identifier10.1080/15265160802478404en
dc.identifier.bibliographicCitationAmerican Journal of Bioethics 2008 October; 8(10): 62-70en
dc.identifier.urihttp://hdl.handle.net/10822/513409en
dc.description.abstractIt is unclear whether the regulatory distinction between non-identifiable and identifiable information--information used to determine informed consent practices for the use of clinically derived samples for genetic research--is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario (i.e., following the regulatory distinction). Curiosity-based reasons were the most common (37%) among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission (versus notification) in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples.en
dc.description.urihttp://dx.doi.org/10.1080/15265160802478404en
dc.formatArticleen
dc.languageengen
dc.source319480en
dc.subjectAcademic Medical Centersen
dc.subjectAttitudesen
dc.subjectConsenten
dc.subjectEducationen
dc.subjectGenetic Researchen
dc.subjectHealthen
dc.subjectInformed Consenten
dc.subjectInterviewsen
dc.subjectMedicineen
dc.subjectNotificationen
dc.subjectPatientsen
dc.subjectResearchen
dc.subjectResearchersen
dc.subjectSurgeryen
dc.subject.classificationConfidentialityen
dc.subject.classificationGenetics, Molecular Biology and Microbiologyen
dc.subject.classificationInformed Consent or Human Experimentationen
dc.titlePatients' views on identifiability of samples and informed consent for genetic research.en
dc.provenanceDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National Human Genome Research Instituteen
dc.provenanceDigital citation migrated from OpenText Livelink Discovery Server database named GenETHX to DSpace collection GenETHX hosted by Georgetown Universityen


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