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UK Health and Social Care Act 2001
http://www.opsi.gov.uk/ACTS/acts2001/20010015.htm
Institutional sources and documents 209
UK Human Genetics Commission
Report to the Human Genetics Commission on Public Attitudes to the
Uses of Human Genetic Information (2000)
http://www.hgc.gov.uk/UploadDocs/DocPub/Document/
public_attitudes.pdf
UK Human Tissues Act 2004
http://www.opsi.gov.uk/acts/acts2004/20040030.htm
UK Parliamentary Office of Science and Technology
The Great GM Food Debate : A Survey of Media Coverage in the First
Half of 1999 (2000)
www.parliament.uk/post/report138.pdf
UK Patient Information Advisory Group (PIAG)
Your Health Records: Safeguarding Confidential Information
http://www.advisorybodies.doh.gov.uk/piag/HealthRecords.pdf
UK Public Health Genetics Unit
Addressing Genetics Delivering Health: A Strategy for Advancing the
Dissemination and Application of Genetics Knowledge Throughout our
Health Professions (2003)
http://www.phgu.org.uk/pages/work/education/addressing.htm
US Counsel for War Crimes
The Nuremberg Code (1949)
Trials of War Criminals before the Nuremberg Military Tribunals under
Control Council Law no. 10, vol. 2, pp. 181 2.
http://www.ushmm.org/research/doctors/
Nuremberg_Code.htm
US Department of Energy
Draft Genetic Privacy Act and Commentary (1995)
http://www.ornl.gov/sci/techresources/Human_Genome/
resource/privacy/privacy1.htm
US Department of Health, Education, and Welfare
The Belmont Report: Ethical Principles and Guidelines for the
210 Institutional sources and documents
Protection of Human Subjects of Research (1979)
http://ohsr.od.nih.gov/guidelines/belmont.html
US Genetics and Public Policy Center
Reproductive Genetic Testing: What America Thinks (2004)
http://www.dnapolicy.org/tools-content/pdfs/6/66756.pdf
US National Conference of State Legislatures
State Genetic Privacy Laws (2005)
http://www.ncsl.org/programs/health/genetics/prt.htm
US National Institutes of Health
Privacy and Discrimination Federal Legislation Archive
http://www.genome.gov/11510239
World Medical Association
Declaration of Helsinki
Declaration of Ethical Principles for Medical Research Involving Human
Subjects (2004)
http://www.wma.net/e/policy/b3.htm
All URLs tested and working 29 March 2006.
Index
accountability 167 82, 197 confidentiality 123 7
first- and second-order obligations involved contrast with data protection 126 7
in 167 8 legal discussion of 124 6
managerial 172 4 consent. See also informed consent
professional 171 and non-competence 71, 192 4
promoting trust 167 as waiver 72 7, 189
purposes served by systems of 168 bogus 92, 95, 154
structure of 181 2 explicit and implicit 8, 10 11, 80
variety of systems of 167 9, 170 generic and specific 8, 11 12, 80, 190
Alder Hey Hospital 14 hypothetical 6
anonymisation impossibility of fully explicit 12
of DNA samples 118 19 in data protection legislation 112, 116, 128
of personal data 116 19, 157 8, 195 6 opacity of 12 15
autonomy 16 22, 69 72 proxy 6
individual 18, 20, 185 6 reasons for waiving prohibitions 75 6
Kantian 17 to cannibalism or torture 70
limitations of an appeal to 69 72 consent requirements
principled 17 varying standards for 81 2
rational 21
Data Protection Act 1998 22, 111 21, 128
commitments and personal information 113 15
cognitive and practical 50 7 broad definition of information processing 114
communication and 90 4 declaration of Helsinki. See Helsinki, declaration of
consent and 90 4 direction of fit 52, 161
communication Draft Genetic Privacy Act 133 7
agency model of 65, 66, 180
communicative commitments 90 4 epistemic norms 63 See also informational
conduit and container model of 34 5, 65 obligations
mathematical theory of 37, 146 7 and informed consent 184 5
two models of 64, 68 9, 130 1 epistemic responsibility 60 1
via action. See communicative actions European Directive (95/46/EC) on data
communicative actions 54 7 protection 120
communicative norms 41 2, 57 64, explicit consent. See consent, explicit and implicit
84 90
communicative obligations 123 7 generic consent. See consent, generic and specific
conduit and container metaphors 34 5, genetic exceptionalism 132
194 5, 197 genetic information
and genetic information 147 9, 150 2 attitudes to 142 3
and information privacy 105 11 conduit and container metaphors for 147 9,
and informed consent 68 9 150 2
and transparency 178 81 contained in DNA 145 9
211
212 Index
genetic information (cont.) distortions of 34
in molecular biology 146 7 extended scope of 4 6
nature of 145 9 justification in terms of individual autonomy
privacy rights over 133 45 16 22
risk of abusing 143 4 no uniform standard for 83
variety of uses of 140 2 practical proposals 189 97
genetic knowledge 131 2 regulatory reinforcement of 22 4
genetic privacy. See privacy, genetic rethinking justification of 72 7
Genetic Privacy Act. See Draft Genetic Privacy Act rethinking scope of 77 84
genetic privacy legislation 23 standards for 6 16, 189 92
transactional model of 69
Helsinki, declaration of 7 9, 80, 82 two models of 68 9
Human Tissues Act 2004 23
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