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020			_a9789401795739
040			_aES-MaUEC
050		4	_aQh332 _b2015 EB
082	0	4	_a610.1
245	0	0	_aEthics, law and governance of biobanking : _bnational, european and international approaches _cedited by Deborah Mascalzoni
260			_aDordrecht [etc.] _bSpringer _ccop. 2015
300			_a1 recurso en línea (VIII, 277 p.) ; _bil.
336			_aTexto (visual) _btxt _2rdacontent
337			_aelectrónico _bc _2rdamedia
338			_arecurso electrónico _bcr _2rdacarrier
338			_aonline resource _bcr _2rdacarrier
347			_atext file _bPDF _2rda
490	1		_aThe International Library of Ethics, Law and Technology _x1875-0044 _v14
520			_aBiobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but theÂ{u08AF}rders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks.Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldnâ€{u482F}nly be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.
942			_2lcc _cLE
650		7	_9141696 _aBioética _0comprobar BNE19901003060 _2embne
700	1		_aMascalzoni, Deborah _eeditor literario _995759 _0Local
856	4	0	_uhttps://go.openathens.net/redirector/universidadeuropea.es?url=https://link.springer.com/book/10.1007/978-94-017-9573-9 _zAcceso a este recurso digital (usuarios Universidad Europea de Madrid)
901			_ai9789401795739
907			_a.b12913121 _b10-10-17 _c10-02-16
988			_aSpringer_Medicine_2015
998			_am _a_alco _a_vill _b12-07-16 _cm _dz _ea _feng _gne _h0
945			_aQh332 .E84 2015 EB _g1 _ieBOOK _j0 _lmae _o- _pEUR0.00 _q- _r- _sb _t15 _u0 _v0 _w0 _x0 _y.i1158080x _z06-04-17
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