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010   $a9786613684912
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035   $a(OCoLC)795895647
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035   $a(UkCbUP)CR9781139107969
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100   $a20110712d2012||||  uy|            0
101 0 $aeng
135   $aur|||||||||||
181   $ctxt$2rdacontent
182   $cc$2rdamedia
183   $acr$2rdacarrier
200 10$aPrivacy, confidentiality, and health research /$fWilliam W. Lowrance$b[electronic resource]
210  1$aCambridge :$cCambridge University Press,$d2012.
215   $a1 online resource (xiv, 188 pages) $cdigital, PDF file(s)
225 1 $aCambridge bioethics and law ;$v20
300   $aTitle from publisher's bibliographic system (viewed on 05 Oct 2015).
311   $a1-107-69663-1 
311   $a1-107-02087-5 
320   $aIncludes bibliographical references and index.
327   $aIntroduction -- Data, biospecimens, and research -- Privacy, confidentiality, safeguards -- Broad privacy and the data protection regimes -- Healthcare, public health, and research regimes -- Consent -- Identifiability and person-specific data -- Genetics and genomics -- Safeguards and responsibilities -- Data sharing, access, and transfer -- Ways forward.
330   $aThe potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
410  0$aCambridge bioethics and law ;$v20.
517 3 $aPrivacy, Confidentiality, & Health Research
606   $aMedical records$xLaw and legislation
606   $aData protection$xLaw and legislation
606   $aMedicine$xResearch$xLaw and legislation
615  0$aMedical records$xLaw and legislation.
615  0$aData protection$xLaw and legislation.
615  0$aMedicine$xResearch$xLaw and legislation.
676   $a610.285/58
700   $aLowrance$b William W.$f1943-$048906
801  0$bUkCbUP
801  1$bUkCbUP
906   $aBOOK
912   $a9910808003703321
996   $aPrivacy, confidentiality, and health research$93920136
997   $aUNINA