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Genetic Data and the Law : a Critical Perspective on Privacy Protection.
Mark Taylor demonstrates how research using genetic data can be reconciled with proper privacy protection.
| Clasificación: | Libro Electrónico |
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| Autor principal: | |
| Formato: | Electrónico eBook |
| Idioma: | Inglés |
| Publicado: |
Cambridge :
Cambridge University Press,
2012.
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| Colección: | Cambridge bioethics and law.
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| Temas: | |
| Acceso en línea: | Texto completo |
Tabla de Contenidos:
- Cover; Genetic Data and the Law; Series; Title; Copyright; Dedication; Contents; Preface; 1 Introduction; Genetic data; The legal protection of genetic privacy; Assessing privacy protection; Public cf. private interest; Structure; Part I: The context; 2 Privacy; What is privacy?; Privacy as control; Value and control; Privacy as a norm of exclusivity; Norms and the transactional variable; Norms, transactions and the relational variable; Privacy, public interest and legitimacy; Public expectations and genetic research; Reflection; 3 Genetic data; Data and information.
- Genetic data cf. genetic informationWhat is genetic information?; What cf. whether; Genetic information as an indicator; A composite understanding of genetic information; Private vs. observable cf. sensitive vs. non-sensitive; Personal genetic information vs. human genetic information; Changing access to genetic information; Reflection; 4 The law; SECTION I A LEGAL CONCEPT OF PRIVACY; Universal Declaration of Human Rights; The European Convention for the Protection of Human Rights and Fundamental Freedoms; Research and proportionate interference; Research and data protection.
- The Data Protection Directive (95/46/EC)What is personal data?; Multiple data subjects and biological samples; Personal data and norms of exclusivity; Legitimate data processing; Supplementary material?; Other principles of data protection; Rights to access and to object; SECTION I I INTERNATIONAL LEGAL STANDARDS APPLICABLE SPECIFICALLY TO GENETIC DATA; Transactional variable; Relational variable; Reflections; Part II: The critique; 5 Data in common; Terminology; Family members (and other affected individuals); Structure; SECTION I DATA SUBJECTS AND GENETIC DATA IN COMMON.
- Defining data subjectsCan data 'relate to' more than one individual?; Can genetic data 'relate to' more than one individual?; SECTION I I WHY MIGHT RECOGNISING MULTIPLE (GENETIC) DATA SUBJECTS BE PROBLEMATIC?; English law and secondary data subjects; Durant v. FSA [2003]; Passing the threshold; Problems with not recognising multiple data subjects; Inadequate protection; Alternative responses; SECTION I I I ADDRESSING THE BALANCE; How should data be understood to 'relate to' another individual in order for that data to be personal data?; Expanding the exemptions; 6 Anonymity; Structure.
- SECTION I TERMINOLOGYSECTION I I DATA PROTECTION AND ANONYMOUS DATA; The burden of compliance and the UK implementation of identifiability; Can a data controller meet responsibilities to an anonymous data subject?; Notification; Access and objection; Reasons to protect anonymous data; Zorro's mask and re-identification; Fresh association; Anonymity and failure to protect group interests; Private data cf. identifiable data; Are we overprotecting identifiability?; Reflection; 7 Human tissue; Structure; SECTION I HUMAN BIOLOGICAL MATERIAL, SAMPLES, DATA AND INFORMATION.