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The global emergence of epidemiological biobanks: opportunities and challenges

Paul R. Burton, Isabel Fortier, and Bartha M. Knoppers

in Human Genome Epidemiology, 2nd Edition: Building the evidence for using genetic information to improve health and prevent disease

Published in print:
2009
Published Online:
May 2010
ISBN:
9780195398441
eISBN:
9780199776023
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780195398441.003.0005
Subject:
Public Health and Epidemiology, Public Health, Epidemiology

This chapter discusses the emergence of biobanks around the world. Specifically, it considers the scientific role of biobanks and the scientific and ethico-legal challenges of biobanks. The science ... More


Life on Ice: A History of New Uses for Cold Blood

Joanna Radin

Published in print:
2017
Published Online:
September 2017
ISBN:
9780226417318
eISBN:
9780226448244
Item type:
book
Publisher:
University of Chicago Press
DOI:
10.7208/chicago/9780226448244.001.0001
Subject:
History, History of Science, Technology, and Medicine

After the atomic bombing at the end of World War II, anxieties about survival in the nuclear age led scientists to begin stockpiling and freezing hundreds of thousands of blood samples from ... More


Cultural authority of informed consent: indigenous participation in biobanking and salmon genomics focus groups

Michael Burgess and James Tansey

in The Limits of Consent: A socio-ethical approach to human subject research in medicine

Published in print:
2009
Published Online:
September 2009
ISBN:
9780199231461
eISBN:
9780191723858
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780199231461.003.0012
Subject:
Public Health and Epidemiology, Public Health, Epidemiology

This chapter focuses on the ethics of involving indigenous people in research. It describes the Democracy, Ethics and Genomics project, which was organized to compare across human and non-human ... More


Risky business: re-evaluating participant risk in biobanking 1

Nils Hoppe

in Human Tissue Research: A European perspective on the ethical and legal challenges

Published in print:
2011
Published Online:
May 2011
ISBN:
9780199587551
eISBN:
9780191725630
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780199587551.003.0004
Subject:
Public Health and Epidemiology, Public Health

Participation in research and therapy in most cases entails a certain degree of risk for the participants. Traditionally, the notion of risk in this setting has been taken to mean risk of physical ... More


Reciprocity, trust, and public interest in research biobanking: in search of a balance

Nadja K. Kanellopoulou

in Human Tissue Research: A European perspective on the ethical and legal challenges

Published in print:
2011
Published Online:
May 2011
ISBN:
9780199587551
eISBN:
9780191725630
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780199587551.003.0005
Subject:
Public Health and Epidemiology, Public Health

The UK legal framework for research biobanking is central to this chapter. The chapter discusses normative paradoxes in the governance of human biological material in research. It points out that ... More


Mandating Consent for Future Research with Biospecimens: A Call for Enhanced Community Engagement

Carol Weil, Hilary Shutak, Benjamin Fombonne, and Nicole Lockhart

in Human Subjects Research Regulation: Perspectives on the Future

Published in print:
2014
Published Online:
January 2015
ISBN:
9780262027465
eISBN:
9780262320825
Item type:
chapter
Publisher:
The MIT Press
DOI:
10.7551/mitpress/9780262027465.003.0019
Subject:
Biology, Bioethics

The use of human biological samples in medical research has the potential to transform our understanding of health and disease in the age of the genome, but the collection and banking of samples for ... More


The Context and State of the Art in European Biobanking

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0003
Subject:
Law, Intellectual Property, IT, and Media Law

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 ... More


Testing the GDPR in Relation to Biobanking: When Does the GDPR Apply to Biobanking?

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0007
Subject:
Law, Intellectual Property, IT, and Media Law

This chapter looks at when the General Data Protection Regulation (GDPR) applies, rationae materiae, to biobanking—only when the law applies to biobanking can it be expected to provide any protection ... More


Conclusion

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0011
Subject:
Law, Intellectual Property, IT, and Media Law

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 ... More


Protecting Genetic Privacy in Biobanking through Data Protection Law

Dara Hallinan

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
book
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.001.0001
Subject:
Law, Intellectual Property, IT, and Media Law

Biobanks are critical infrastructure for medical research. Biobanks, however, are also the subject of considerable ethical and legal uncertainty. Given that biobanks process large quantities of ... More


Testing the GDPR in Relation to Biobanking: How Do the GDPR’s Substantive Provisions Apply to Biobanking?

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0009
Subject:
Law, Intellectual Property, IT, and Media Law

This chapter explains how the General Data Protection Regulation's (GDPR) substantive provisions apply to biobanking. It breaks provisions down into seven groups—oversight, legitimate processing, ... More


Introduction

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0001
Subject:
Law, Intellectual Property, IT, and Media Law

This introductory chapter provides an overview of the protection of genetic privacy in biobanking. The fact that genomic research relies on the processing of large quantities of individuals' genomic ... More


Genetic Privacy and Other Interests in Biobanking: Conflict and Confluence

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0004
Subject:
Law, Intellectual Property, IT, and Media Law

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 ... More


The Protection of Genetic Privacy in Biobanking at International Level: Establishing a Baseline Standard for Genetic Privacy Protection in Biobanking

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0005
Subject:
Law, Intellectual Property, IT, and Media Law

This chapter sketches a baseline level of protection for genetic privacy rights in biobanking, against which legal systems, including the General Data Protection Regulation (GDPR), might be compared. ... More


Do We Need Data Protection at All?: Evaluating Protection for Genetic Privacy in Biobanking in Europe Excluding Data Protection

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0006
Subject:
Law, Intellectual Property, IT, and Media Law

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, ... More


Testing the GDPR in Relation to Biobanking: How Does the GDPR Classify the Biobanking Process?

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0008
Subject:
Law, Intellectual Property, IT, and Media Law

This chapter addresses how the biobanking process—in the instances in which it falls within the scope of the General Data Protection Regulation (GDPR)—is classified under the GDPR's classification ... More


A Critical Analysis of the Efficacy of the GDPR as a Framework for the Protection of Genetic Privacy in Biobanking

Dara Hallinan

in Protecting Genetic Privacy in Biobanking through Data Protection Law

Published in print:
2021
Published Online:
April 2021
ISBN:
9780192896476
eISBN:
9780191918919
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/oso/9780192896476.003.0010
Subject:
Law, Intellectual Property, IT, and Media Law

This chapter presents a critical analysis of the efficacy of the General Data Protection Regulation (GDPR) as a framework for the protection of genetic privacy in biobanking. In this regard, it ... More


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