Genetic data and the law: a critical perspective on privacy protection
Gespeichert in:
| 1. Verfasser: | |
|---|---|
| Format: | Buch |
| Sprache: | English |
| Veröffentlicht: |
Cambridge [u.a.]
Cambridge Univ. Press
2012
|
| Ausgabe: | 1. publ. |
| Schriftenreihe: | Cambridge bioethics and law
|
| Schlagworte: | |
| Online-Zugang: | Cover image Inhaltsverzeichnis |
| Beschreibung: | "Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection"-- Provided by publisher. |
| Beschreibung: | XIII, 232 S. |
| ISBN: | 9781107007116 |
Internformat
MARC
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| 500 | |a "Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection"-- Provided by publisher. | ||
| 650 | 4 | |a Politik | |
| 650 | 4 | |a Recht | |
| 650 | 4 | |a Medical genetics |x Law and legislation | |
| 650 | 4 | |a Medical records |x Access control | |
| 650 | 4 | |a Genetic engineering |x Law and legislation | |
| 650 | 4 | |a Biotechnology |x Law and legislation | |
| 650 | 4 | |a Human chromosome abnormalities |x Diagnosis |x Law and legislation | |
| 650 | 4 | |a Human genetics |x Government policy | |
| 650 | 4 | |a Privacy, Right of | |
| 650 | 4 | |a Data protection |x Law and legislation | |
| 650 | 7 | |a LAW / Medical Law & Legislation |2 bisacsh | |
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Datensatz im Suchindex
| _version_ | 1804148963301916672 |
|---|---|
| adam_text | Titel: Genetic data and the law
Autor: Taylor, Mark
Jahr: 2012
Contents
Preface page xü
Introduction l
Genetic data 3
The legal protection of genetic privacy 5
Assessing privacy protection 7
Public cf. private interest 8
Structure 10
Part I The context 11
2 Privacy 13
What is privacy? 14
Privacy as control 17
Value and control 22
Privacy as a norm of exclusivity 25
Norms and the transactional variable 26
Norms, transactions and the relational variable 28
Privacy, public interest and legitimacy 29
Public expectations and genetic research 34
Reflection 38
3 Genetic data 41
Data and information 41
Genetic data cf. genetic information 43
What is genetic information? 44
What cf. whether 47
Genetic information as an indicator 48
A composite understanding of genetic information 53
Private vs. observable cf. sensitive vs. non-sensitive 55
Personal genetic information vs. human genetic information 57
Changing access to genetic information 58
Reflection 60
4 The law 62
SECTION I A LEGAL CONCEPT OF PRIVACY 64
Universal Declaration of Human Rights 64
x Contents
The European Convention for the Protection of Human Rights
and Fundamental Freedoms 66
Research and proportionate interference 73
Research and data protection 74
The Data Protection Directive (95/46/EC) 76
What is personal data? 78
Multiple data subjects and biological samples 80
Personal data and norms of exclusivity 82
Legitimate data processing 83
Supplementary material? 85
Other principles of data protection 87
Rights to access and to object 89
SECTION II INTERNATIONAL LEGAL STANDARDS APPLICABLE
SPECIFICALLY TO GENETIC DATA 93
Transactional variable 94
Relational variable 96
Reflections 97
Part II The critique 101
5 Data in common 103
Terminology 104
Family members (and other affected individuals) 106
Structure 107
SECTION I DATA SUBJECTS AND GENETIC DATA IN COMMON 109
Defining data subjects 110
Can data relate to more than one individual? Ill
Can genetic data relate to more than one individual? 113
SECTION II WHY MIGHT RECOGNISING MULTIPLE (GENETIC) DATA
SUBJECTS BE PROBLEMATIC? 116
English law and secondary data subjects 119
Durantv.FSA [2003] 120
Passing the threshold 121
Problems with not recognising multiple data subjects 122
Inadequate protection 122
Alternative responses 124
SECTION III ADDRESSING THE BALANCE 126
How should data be understood to relate to1 another individual in order
for that data to be personal data? 127
Expanding the exemptions 129
6 Anonymity 131
Structure 131
SECTION I TERMINOLOGY 134
SECTION II DATA PROTECTION AND ANONYMOUS DATA 138
The burden of compliance and the UK implementation of identifiability 140
Can a data controller meet responsibilities to an anonymous data subject? 142
Notification 142
Access and objection 143
Reasons to protect anonymous data 145
Contents
XI
Zorro s mask and re-identification 146
Fresh association 149
Anonymity and failure to protect group interests 150
Private data cf. identifiable data 151
Are we overprotecting identifiability? 153
Reflection 155
7 Human tissue 157
Structure 160
SECTION I HUMAN BIOLOGICAL MATERIAL, SAMPLES,
DATA AND INFORMATION 16]
SECTION II PERSONAL DATA, BIOLOGICAL SAMPLES
AND NORMATIVE EXPECTATIONS 164
Normative expectations 165
Convention on Human Rights and Biomedicine 167
The Declaration of Helsinki 169
International Declaration on Human Genetic Data 172
International guidance on the use of genetic data within biobanks 174
SECTION III THE FINITE NATURE OF DATA - A RELEVANT
DISTINCTION? 175
Advantages to treating biological samples as personal data 176
Reflection 178
8 Genetic discrimination 180
Structure 182
SECTION I TERMINOLOGY 183
Three kinds of genetic discrimination 185
SECTION II PROBLEMS OF DISTINCTION AND DEFINITION 188
An alternative approach? 190
Drawing a distinction within different kinds of discrimination 191
Drawing a line within primary genetic discrimination 192
Drawing a line within secondary or tertiary genetic discrimination 193
SECTION III IMPLICATIONS FOR REGULATORY REFORM 197
Part III The consequence 199
9 Potential, promise and possibility 201
Personal information and privacy protection: a dysfunctional relationship 202
The limits of personal information 203
The interpretive pedigree of recorded information 204
Consent 206
Anonymisation 210
Implications for reform: short term 211
Implications for reform: medium term 216
Implications for reform: long term 219
Index 222
|
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| id | DE-604.BV039980539 |
| illustrated | Not Illustrated |
| indexdate | 2024-07-10T00:15:29Z |
| institution | BVB |
| isbn | 9781107007116 |
| language | English |
| lccn | 2011042621 |
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| physical | XIII, 232 S. |
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| series2 | Cambridge bioethics and law |
| spelling | Taylor, Mark Verfasser aut Genetic data and the law a critical perspective on privacy protection Mark Taylor 1. publ. Cambridge [u.a.] Cambridge Univ. Press 2012 XIII, 232 S. txt rdacontent n rdamedia nc rdacarrier Cambridge bioethics and law "Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection"-- Provided by publisher. Politik Recht Medical genetics Law and legislation Medical records Access control Genetic engineering Law and legislation Biotechnology Law and legislation Human chromosome abnormalities Diagnosis Law and legislation Human genetics Government policy Privacy, Right of Data protection Law and legislation LAW / Medical Law & Legislation bisacsh http://assets.cambridge.org/97811070/07116/cover/9781107007116.jpg Cover image HBZ Datenaustausch application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=024837891&sequence=000004&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | Taylor, Mark Genetic data and the law a critical perspective on privacy protection Politik Recht Medical genetics Law and legislation Medical records Access control Genetic engineering Law and legislation Biotechnology Law and legislation Human chromosome abnormalities Diagnosis Law and legislation Human genetics Government policy Privacy, Right of Data protection Law and legislation LAW / Medical Law & Legislation bisacsh |
| title | Genetic data and the law a critical perspective on privacy protection |
| title_auth | Genetic data and the law a critical perspective on privacy protection |
| title_exact_search | Genetic data and the law a critical perspective on privacy protection |
| title_full | Genetic data and the law a critical perspective on privacy protection Mark Taylor |
| title_fullStr | Genetic data and the law a critical perspective on privacy protection Mark Taylor |
| title_full_unstemmed | Genetic data and the law a critical perspective on privacy protection Mark Taylor |
| title_short | Genetic data and the law |
| title_sort | genetic data and the law a critical perspective on privacy protection |
| title_sub | a critical perspective on privacy protection |
| topic | Politik Recht Medical genetics Law and legislation Medical records Access control Genetic engineering Law and legislation Biotechnology Law and legislation Human chromosome abnormalities Diagnosis Law and legislation Human genetics Government policy Privacy, Right of Data protection Law and legislation LAW / Medical Law & Legislation bisacsh |
| topic_facet | Politik Recht Medical genetics Law and legislation Medical records Access control Genetic engineering Law and legislation Biotechnology Law and legislation Human chromosome abnormalities Diagnosis Law and legislation Human genetics Government policy Privacy, Right of Data protection Law and legislation LAW / Medical Law & Legislation |
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