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The emergence of biobanks: between ethics, risks, and governance

dc.contributor.authorDowney, Catarina
dc.contributor.authorCurado, Henrique
dc.contributor.authorJacquinet, Marc
dc.date.accessioned2017-01-16T12:13:20Z
dc.date.available2019-12-31T01:30:12Z
dc.date.issued2016-04-20
dc.description.abstractPublic health research and planning, and the development of more effective therapies for individuals may take on radical new dimensions with the newly information made available through biobanks. Furthermore, the information that can be disclosed about an individual can also be used, intentionally or unintentionally, for economic and social discrimination, especially in insurance, employment, attribution of bank credits and other access issues (Rose & Novas, 2005). Alongside the scientific revolution, the European understanding and acceptance of biotechnology evolved. Data protection is an important aspect of medical data and a major condition for the safeguarding of fundamental rights and freedoms of individuals, especially privacy. However, the development of these important safeguards still requires the consideration of many key questions about the meaning of privacy in relation to genetic information and about effective protection of legitimate rights (Taylor & Townend, 2010. Several studies have been devoted to the ethical, regulatory and social challenges associated with biobanks, particularly in relation to consent and privacy.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.doi10.4018/978-1-4666-9978-6.ch014pt_PT
dc.identifier.isbn9781466699786
dc.identifier.isbn9781466699793
dc.identifier.urihttp://hdl.handle.net/10400.2/5931
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherIGI Globalpt_PT
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/pt_PT
dc.titleThe emergence of biobanks: between ethics, risks, and governancept_PT
dc.typebook part
dspace.entity.typePublication
oaire.citation.conferencePlaceHerseypt_PT
oaire.citation.endPage178pt_PT
oaire.citation.startPage169pt_PT
oaire.citation.titleEncyclopedia of E-Health and Telemedicinept_PT
person.familyNameCurado
person.familyNameJacquinet
person.givenNameHenrique
person.givenNameMarc
person.identifierR-000-K0Z
person.identifier.ciencia-idCC11-51FD-F4CE
person.identifier.orcid0000-0002-2358-9124
person.identifier.orcid0000-0003-1157-060X
person.identifier.ridC-1097-2009
person.identifier.scopus-author-id56534034400
person.identifier.scopus-author-id36727345600
rcaap.rightsopenAccesspt_PT
rcaap.typebookPartpt_PT
relation.isAuthorOfPublication352c20bf-7a2c-435f-96fb-0f7fe9b20148
relation.isAuthorOfPublication3f95c487-fed0-4374-a428-b1dee2db4a9a
relation.isAuthorOfPublication.latestForDiscovery3f95c487-fed0-4374-a428-b1dee2db4a9a

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