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dc.creatorMetcalfe, C.en
dc.creatorMartin, R.M.en
dc.creatorNoble, S.en
dc.creatorLane, J.A.en
dc.creatorHamdy, F.C.en
dc.creatorNeal, D.E.en
dc.creatorDonovan, J.L.en
dc.date.accessioned2016-01-08T23:16:19Zen
dc.date.available2016-01-08T23:16:19Zen
dc.date.created2008-01en
dc.date.issued2008-01en
dc.identifierdoi:10.1136/jme.2006.019661en
dc.identifier.bibliographicCitationJournal of Medical Ethics 2008 January; 34(1): 37-40en
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=Low+risk+research+using+routinely+collected+identifiable+health+information+without+informed+consent:+encounters+with+the+Patient+Information+Advisory+Group&title=Journal+of+Medical+Ethics+&volume=34&issue=1&date=2008-01&au=Metcalfe,+C.;+Martin,+R.M.;+Noble,+S.;+Lane,+J.A.;+Hamdy,+F.C.;+Neal,+D.E.;+Donovan,+J.L.en
dc.identifier.urihttp://dx.doi.org/10.1136/jme.2006.019661en
dc.identifier.urihttp://hdl.handle.net/10822/959492en
dc.description.abstractCurrent UK legislation is impacting upon the feasibility and cost-effectiveness of medical record-based research aimed at benefiting the NHS and the public heath. Whereas previous commentators have focused on the Data Protection Act 1998, the Health and Social Care Act 2001 is the key legislation for public health researchers wishing to access medical records without written consent. The Act requires researchers to apply to the Patient Information Advisory Group (PIAG) for permission to access medical records without written permission. We present a case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research, and in our case 560,000pound of public and charitable money was spent on research staff while a large part of their work was prohibited until the third year of a three year grant. We conclude by arguing that many of the current problems could be avoided by returning PIAG's responsibilities to research ethics committees, and by allowing "opt-out" consent for many public health research projects.en
dc.formatArticleen
dc.languageenen
dc.sourceeweb:313663en
dc.subjectConsenten
dc.subjectEthicsen
dc.subjectEthics Committeesen
dc.subjectHealthen
dc.subjectInformed Consenten
dc.subjectLegislationen
dc.subjectMedical Recordsen
dc.subjectPublic Healthen
dc.subjectRecordsen
dc.subjectResearchen
dc.subjectResearch Ethicsen
dc.subjectResearch Ethics Committeesen
dc.subjectResearchersen
dc.subjectRisken
dc.subjectResponsibilitiesen
dc.subject.classificationConfidentialityen
dc.subject.classificationHuman Experimentation Policy Guidelines / Institutional Review Boardsen
dc.subject.classificationInformed Consent or Human Experimentationen
dc.titleLow Risk Research Using Routinely Collected Identifiable Health Information Without Informed Consent: Encounters With the Patient Information Advisory Groupen
dc.provenanceCitation prepared by the Library and Information Services group of the Kennedy Institute of Ethics, Georgetown University for the ETHXWeb database.en
dc.provenanceCitation migrated from OpenText LiveLink Discovery Server database named EWEB hosted by the Bioethics Research Library to the DSpace collection EthxWeb hosted by DigitalGeorgetown.en


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