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dc.contributor.authorGillam, L
dc.contributor.authorPoulakis, Z
dc.contributor.authorTobin, S
dc.contributor.authorWake, M
dc.date.available2014-05-21T19:00:25Z
dc.date.issued2006-09-01
dc.identifierpii: 32/9/537
dc.identifier.citationGillam, L., Poulakis, Z., Tobin, S. & Wake, M. (2006). Enhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss. JOURNAL OF MEDICAL ETHICS, 32 (9), pp.537-541. https://doi.org/10.1136/jme.2005.013201.
dc.identifier.issn0306-6800
dc.identifier.urihttp://hdl.handle.net/11343/25528
dc.descriptionC1 - Journal Articles Refereed
dc.description.abstractClinical genetic research is often regarded as more ethically problematic than other forms of research, and in some countries is subject to specific regulation, requiring researchers to follow specialised guidelines. In this paper, an approach to enhancing the ethical conduct of genetic research is proposed, which is believed to be more effective than simply attempting to follow general guidelines. The potential concerns, likely areas of misunderstanding and negative reactions of the participant group are systematically investigated before starting a study on genetics. This would constitute, in effect, an ethical pilot study, similar to a feasibility pilot study to test equipment, procedures and logistics. The findings of the ethical pilot study would be used to help in designing ethically important aspects of research protocol, such as recruitment procedures, written and other information for potential participants, informed consent processes and reporting of results including ambiguous or uncertain results.
dc.formatapplication/pdf
dc.languageEnglish
dc.publisherB M J PUBLISHING GROUP
dc.subjectPublic Health and Health Services not elsewhere classified; Public Health not elsewhere classified
dc.titleEnhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss
dc.typeJournal Article
dc.identifier.doi10.1136/jme.2005.013201
melbourne.peerreviewPeer Reviewed
melbourne.affiliationThe University of Melbourne
melbourne.affiliation.departmentPaediatrics Royal Children'S Hospital
melbourne.source.titleJOURNAL OF MEDICAL ETHICS
melbourne.source.volume32
melbourne.source.issue9
melbourne.source.pages537-541
dc.research.coderfcd321299
dc.research.codeseo1998730299
melbourne.publicationid61087
melbourne.elementsid283088
melbourne.openaccess.pmchttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563404
melbourne.contributor.authorGillam, Lynn
melbourne.contributor.authorPoulakis, Zeffie
melbourne.contributor.authorWake, Melissa
dc.identifier.eissn1473-4257
melbourne.conference.locationEngland
melbourne.accessrightsAccess this item via the Open Access location


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