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Protecting Genetic Privacy in Biobanking through Data Protection Law最新文献

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Testing the GDPR in Relation to Biobanking 测试GDPR与生物银行的关系
Protecting Genetic Privacy in Biobanking through Data Protection Law Pub Date : 2021-03-11 DOI: 10.1093/OSO/9780192896476.003.0007
D. Hallinan
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引用次数: 0
Do We Need Data Protection at All? 我们到底需要数据保护吗?
Protecting Genetic Privacy in Biobanking through Data Protection Law Pub Date : 1900-01-01 DOI: 10.1093/oso/9780192896476.003.0006
D. Hallinan
{"title":"Do We Need Data Protection at All?","authors":"D. Hallinan","doi":"10.1093/oso/9780192896476.003.0006","DOIUrl":"https://doi.org/10.1093/oso/9780192896476.003.0006","url":null,"abstract":"This chapter assesses whether there is any need to consider European data protection law as a framework for the protection of genetic privacy in biobanking in Europe at all. To answer the question, the chapter conducts a thought experiment and examines what the standard of protection in Europe would look like if one were to exclude data protection law from consideration. This is merely a thought experiment, as data protection already plays, and will continue to play, a significant role in the protection of genetic privacy in biobanking in Europe. The exercise is enlightening, however, in showing the extent of flaws in protection in European legal systems stripped of data protection. In this regard, the chapter then maps the protection provided to genetic privacy in biobanking by the EU's, and three European states'—Estonia, Germany, and the UK—legal systems. It then engages in a critical analysis, highlighting the significant inadequacy of the protection provided by these systems excluding data protection law. Finally, the chapter shows why, generally, European data protection law under the General Data Protection Regulation (GDPR) looks a viable solution to address the problems displayed by other approaches.","PeriodicalId":239180,"journal":{"name":"Protecting Genetic Privacy in Biobanking through Data Protection Law","volume":"101 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"1900-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123543748","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Conclusion 结论
Protecting Genetic Privacy in Biobanking through Data Protection Law Pub Date : 1900-01-01 DOI: 10.1093/oso/9780192896476.003.0011
D. Hallinan
{"title":"Conclusion","authors":"D. Hallinan","doi":"10.1093/oso/9780192896476.003.0011","DOIUrl":"https://doi.org/10.1093/oso/9780192896476.003.0011","url":null,"abstract":"This concluding chapter argues that European data protection law, under the General Data Protection Regulation (GDPR), can and ought to be looked at to play a central role in the protection of genetic privacy in biobanking in Europe. In the first instance, the substantive framework presented by the GDPR already offers an impressive baseline level of protection for genetic privacy. In turn, while numerous problems with this baseline standard of protection are identifiable, the GDPR offers the normative flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to facilitate the realisation of solutions. The interaction between GDPR and biobanking is still, however, in the early stages. Whether this potential is realised now depends on the decisions and actions of regulatory stakeholders in the biobanking space. Their decisions have the potential to optimise or undermine the GDPR as a system for the protection of genetic privacy in biobanking. The biobanking community also have consequential choices as to how they perceive and operationalise the GDPR.","PeriodicalId":239180,"journal":{"name":"Protecting Genetic Privacy in Biobanking through Data Protection Law","volume":"77 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"1900-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122395542","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Context and State of the Art in European Biobanking 欧洲生物银行的背景和现状
Protecting Genetic Privacy in Biobanking through Data Protection Law Pub Date : 1900-01-01 DOI: 10.1093/oso/9780192896476.003.0003
D. Hallinan
{"title":"The Context and State of the Art in European Biobanking","authors":"D. Hallinan","doi":"10.1093/oso/9780192896476.003.0003","DOIUrl":"https://doi.org/10.1093/oso/9780192896476.003.0003","url":null,"abstract":"This chapter examines the context and state of the art in European biobanks and biobanking. Specifically, it seeks to provide an overview of the emergence, function, and practice of the current European biobanking landscape. It begins by looking at the emergence of biobanks and biobanking, exploring the Human Genome Project (HGP). The chapter then focuses on genomic research—the activity biobanks support—and considers its social significance and prospects. Against this background, it offers a definition for the concepts of biobank and biobanking. This definition is then used to map the range of types of biobanks, and biobanking activity, identifiable across Europe. The chapter concludes with a consideration of trends which will define European biobanking in future.","PeriodicalId":239180,"journal":{"name":"Protecting Genetic Privacy in Biobanking through Data Protection Law","volume":"2008 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"1900-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"125581793","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Genetic Privacy and Other Interests in Biobanking 基因隐私和生物银行的其他利益
Protecting Genetic Privacy in Biobanking through Data Protection Law Pub Date : 1900-01-01 DOI: 10.1093/oso/9780192896476.003.0004
D. Hallinan
{"title":"Genetic Privacy and Other Interests in Biobanking","authors":"D. Hallinan","doi":"10.1093/oso/9780192896476.003.0004","DOIUrl":"https://doi.org/10.1093/oso/9780192896476.003.0004","url":null,"abstract":"This chapter evaluates the concept of genetic privacy and its relationship with biobanking. Genetic privacy is simply a sub-concept of privacy referring to states of separation and exclusivity arising in relation to the processing of genetic data. Genetic privacy rights, then, are simply a subset of privacy rights relating to the processing of genetic data. The chapter then proceeds to map the range of genetic privacy rights engaged by the biobanking process along two axes: the transactional axis—genetic privacy rights held by research subjects; and the relational axis—genetic privacy right held by genetic relatives and genetic groups. Subsequently, it moves to map other types of interests engaged by biobanking, including interests related to the research process and third-party non-research interests in accessing biobank substances. Finally, the chapter offers a rough schematic of the relationships, including conflicts and confluences, between identified rights and interests.","PeriodicalId":239180,"journal":{"name":"Protecting Genetic Privacy in Biobanking through Data Protection Law","volume":"28 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"1900-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130655687","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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