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.
History
Publication title
Journal of bioethical inquiry
Volume
4
Pagination
135-150
ISSN
1176-7529
Department/School
Faculty of Law
Publisher
Springer
Place of publication
The Netherlands
Rights statement
The original publication is available at www.springerlink.com