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10 results

  • Communicating Identifiability Risks to Biobank Donors

  • T.J. KASPERBAUER, MICKEY GJERRIS, GUNHILD WALDEMAR, PETER SANDØE
  • Journal:
    Cambridge Quarterly of Healthcare Ethics / Volume 27 / Issue 1 / January 2018
    Published online by Cambridge University Press:
    07 December 2017, pp. 123-136

  • Recent highly publicized privacy breaches in healthcare and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This article focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or a simplified method of communicating risks during the consent process.

Animal Ethics in Animal Research
  • Helena Röcklinsberg, Mickey Gjerris, I. Anna S. Olsson
  • Published online:
    19 October 2017
    Print publication:
    26 October 2017
  • The use of animals in research has always been surrounded by ethical controversy. This book provides an overview of the central ethical issues focusing on the interconnectedness of science, law and ethics. It aims to make theoretical ethical reasoning understandable to non-ethicists and provide tools to improve ethical decision making on animal research. It focuses on good scientific practice, the 3Rs (replacement, reduction and refinement), ethical theories applied to specific cases and an overview of regulatory issues. The book is co-authored by experts in animal research, animal welfare, social sciences, law and ethics, and provides both animal researchers and members of animal ethics committees with knowledge that can facilitate their work and communication with stakeholders and the public. The book is written to provide knowledge, not to argue a certain position, and is intended to be used in training that aims to fulfil EU Directive 2010/63/EU.