Genetic data and the law : a critical perspective on privacy protection /

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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 con...

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Detalles Bibliográficos
Clasificación:Libro Electrónico
Autor principal: Taylor, Mark, 1973 March 26-
Formato: Electrónico eBook
Idioma:Inglés
Publicado: Cambridge : Cambridge University Press, 2012.
Colección:Cambridge bioethics and law.
Temas:
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.
Dossiers médicaux > Accès > Contrôle.
LAW > Medical Law & Legislation.
Biotechnology > Law and legislation
Data protection > Law and legislation
Genetic engineering > Law and legislation
Human chromosome abnormalities > Diagnosis > Law and legislation
Human genetics > Government policy
Medical genetics > Law and legislation
Medical records > Access control
Privacy, Right of
Instructional and educational works.
Matériel d'éducation et de formation.
Acceso en línea:Texto completo
Tabla de Contenidos:
  • Introduction ; Genetic data
  • The legal protection of genetic privacy
  • Assessing privacy protection
  • Public cf. private interest
  • Structure
  • Part I. The context ; 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
  • Genetic data ; Data and information
  • Genetic data cf. genetic information
  • What 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
  • 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 II. International legal standards applicable specifically to genetic data ; Transactional variable
  • Relational variable
  • Reflections
  • Part II: The critique ; Data in common
  • Terminology
  • Family members (and other affected individuals)
  • Structure
  • Section I. Data subjects and genetic data in common ; Defining data subjects
  • Can data 'relate to' more than one individual?
  • Can genetic data 'relate to' more than one individual?
  • Section II. 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 III. 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
  • Anonymity ; Structure ; Section I. Terminology
  • Section II. 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
  • Human tissue ; Structure ; Section I. Human biological material, samples, data and information
  • Section II. Personal data, biological samples and normative expectations ; Normative expectations
  • Convention on human rights and biomedicine
  • The Declaration of Helsinki
  • International Declaration on Human Genetic Data
  • International guidance on the use of genetic data with biobanks
  • Section III. The finite nature of data : a relevant distinction? ; Advantages to treating biological samples as 'personal data'
  • Reflection
  • Genetic discrimination ; Structure
  • Section I. Terminology ; Three kinds of genetic discrimination
  • Section II. Problems of distinction and definition ; An alternative approach
  • Drawing a distinction within different kinds of discrimination
  • Drawing a line within primary genetic discrimination
  • Drawing a line within secondary or tertiary genetic discrimination
  • Section III. Implications for regulatory reform
  • Part III. The consequence ; Potential, promise and possibility ; Personal information and privacy protection : a dysfunctional relationship
  • The limits of personal information
  • The interpretive pedigree of recorded information
  • Consent
  • Anonymisation
  • Implications for reform : short term
  • Implications for reform : medium term
  • Implications for reform : long term.

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