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What is in a Clause?

A Comparison of Clauses from Population Biobank and Disease Biobank Consent Materials
  • Susan Wallace
  • Stephanie Lazor
  • Bartha Maria Knoppers
Conference paper
  • 635 Downloads
Part of the Veröffentlichungen des Instituts für Deutsches, Europäisches und Internationales Medizinrecht, Gesundheitsrecht und Bioethik der Universitäten Heidelberg und Mannheim book series (IMGB, volume 33)

Abstract

The number of population-based and disease-based biobanks being created for research purposes is increasing. These collections of samples and associated data are being used to discover the links between genes and disease, and the genetic, lifestyle and environmental factors behind common complex diseases. In order to make a decision as to whether or not to provide their consent, potential participants in both types of biobanks need to be informed of the requirements and implications of participation. This comparative examination of clauses contained in consent materials from disease biobanks and population biobanks points to the factors that are specific to each type of biobank and highlights the issues that should be taken into consideration when creating consent materials for biobanking activities.

Keywords

Genetic Research Informed Consent Process Prospective Participant Common Complex Disease Consent Material 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Copyright information

© Springer-Verlag Berlin Heidelberg 2012

Authors and Affiliations

  • Susan Wallace
    • 1
  • Stephanie Lazor
    • 2
  • Bartha Maria Knoppers
    • 2
  1. 1.Governance and Public Participation of the P3G ConsortiumMcGill UniversityMontrealCanada
  2. 2.Centre of Genomics and PolicyMcGill UniversityMontrealCanada

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