LEADER 04278nam 22006851 450 001 9910779495103321 005 20120629094316.0 010 $a1-4725-6584-3 010 $a1-281-06329-0 010 $a9786613773982 010 $a1-84731-883-5 024 7 $a10.5040/9781472565846 035 $a(CKB)2550000000107600 035 $a(EBL)990451 035 $a(OCoLC)809768484 035 $a(SSID)ssj0000689589 035 $a(PQKBManifestationID)12329231 035 $a(PQKBTitleCode)TC0000689589 035 $a(PQKBWorkID)10636239 035 $a(PQKB)10481158 035 $a(MiAaPQ)EBC1772812 035 $a(MiAaPQ)EBC990451 035 $a(Au-PeEL)EBL1772812 035 $a(CaPaEBR)ebr10579753 035 $a(CaONFJC)MIL377398 035 $a(OCoLC)893332327 035 $a(OCoLC)802279445 035 $a(UtOrBLW)bpp09256705 035 $a(Au-PeEL)EBL990451 035 $a(EXLCZ)992550000000107600 100 $a20140929d2012 uy 0 101 0 $aeng 135 $aur|n|---||||| 181 $ctxt 182 $cc 183 $acr 200 00$aGoverning biobanks $eunderstanding the interplay between law and practice /$fby Jane Kaye ... [and others] 205 $a1st ed. 210 1$aOxford [England] ;$aPortland, Oregon :$cHart Publishing,$d2012. 215 $a1 online resource (380 p.) 300 $aDescription based upon print version of record. 311 $a1-84113-905-X 320 $aIncludes bibliographical references and index. 327 $tFrom an idea to a project /$rJane Kaye ... [et al.] --$tEmbedding biobanks in a changing context /$rJane Kaye --$tMapping the regulatory space /$rSusan M.C. Gibbons --$tDynamic networks of practice /$rCatherine Heeney --$tGovernance in practice : patterns of awareness and engagement /$rSusan M.C. Gibbons and Andrew Smart --$tGeneral attitudes to governance /$rSusan M.C. Gibbons and Andrew Smart --$tAttitudes to particular laws and governing bodies /$rSusan M.C. Gibbons and Andrew Smart --$tPreferences for governance /$rSusan M.C. Gibbons and Andrew Smart --$tEnacting governance : the case of access /$rCatherine Heeney and Andrew Smart --$tReflections on practice and governance /$rJane Kaye --$tEthics and the governance of biobanks /$rCatherine Heeney and Michael Parker. 330 $a"Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current governance structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used."--Bloomsbury Publishing. 606 $aBiobanks$xLaw and legislation$zGreat Britain 606 $aBiobanks$xLaw and legislation 606 $aBiobanks$xManagement 606 $2Medical & healthcare law 615 0$aBiobanks$xLaw and legislation 615 0$aBiobanks$xLaw and legislation. 615 0$aBiobanks$xManagement. 676 $a344.4204194 702 $aKaye$b Jane$f1962- 801 0$bUtOrBLW 801 1$bUtOrBLW 906 $aBOOK 912 $a9910779495103321 996 $aGoverning biobanks$93780507 997 $aUNINA