Genetic data and the law : a critical perspective on privacy protection / Mark Taylor.
2012
K3611.R43 T39 2012 (Map It)
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Details
Author
Title
Genetic data and the law : a critical perspective on privacy protection / Mark Taylor.
Published
Cambridge ; New York : Cambridge University Press, 2012.
Call Number
K3611.R43 T39 2012
ISBN
9781107007116 (hbk.)
1107007119 (hbk.)
1107007119 (hbk.)
Description
xiii, 232 pages ; 24 cm.
System Control No.
(OCoLC)756913060
Summary
"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.
Bibliography, etc. Note
Includes bibliographical references and index.
Series
Record Appears in
Table of Contents
Preface
xii
1.
Introduction
1
Genetic data
3
The legal protection of genetic privacy
5
Assessing privacy protection
7
Public cf. private interest
8
Structure
10
pt. 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
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
pt. 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?
111
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
Durant v. 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 to' 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
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
161
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
pt. 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