Article

Journal of Bioethical Inquiry

, Volume 4, Issue 2, pp 135-150

First online:

Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint

  • Margaret OtlowskiAffiliated withCentre for Law and Genetics, Faculty of Law, University of Tasmania Email author 

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Abstract

This paper provides a legal overview of key issues associated with donation of genetic samples and information from a donor perspective. In particular, it addresses the property status of samples as well as issues in respect of consent, privacy, commercialisation and benefit sharing. The paper highlights the need for appropriate protection and safeguards for individuals, but also, importantly, for understanding what donors actually think and want in terms of genetic research and the use of their samples and information. The paper seeks to emphasise the importance of transparency and accountability in the conduct of research in order to maximise donor participation and confidence and public trust in general.

Keywords

Tissue and organ procurement Genetic research Tissue banks Trust Public policy