The politeness of data protection: exploring a legal instrument to regulate medical research using genetic information and biobanking

Research output: ThesisDoctoral ThesisInternal

Abstract

The European Data Protection Directive can contribute the single, adequate and sufficient legal framework to the governance structure for medical research using genetic information and biobanking. This is because the directive addresses both the expressed concerns and needs of the public as well as those of the research and medical communities working in this area. The research for this dissertation discusses technical and conceptual issues within and behind the Law that need to be revised to make this possible (particularly in relation to the concepts of property, the public interest, privacy and citizenship). The author also reflects on the question how the law can operate to encourage trust and confidence in the governance of medical research using genetic information and biobanking. For this purpose the author draws upon the eighteenth century philosophy of politeness as the basis of the attitude that is required to make the operation of the Law effective.
Original languageEnglish
QualificationDoctor of Philosophy
Awarding Institution
  • Maastricht University
Supervisors/Advisors
  • Horstman, Klasien, Supervisor
  • Nys, H., Supervisor, External person
Award date12 Sep 2012
Place of PublicationMaastricht
Publisher
Print ISBNs978 94 6159 163 0
Publication statusPublished - 1 Jan 2012

Keywords

  • biobanking
  • genetic information
  • medical research
  • data protection
  • privacy
  • property
  • public interest
  • citizenship
  • duty
  • politeness

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