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

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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.

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Notes

  1. Australian data on these issues is in the process of being gathered by Jennifer Fleming who is undertaking her PhD research to determine stakeholder perspectives with regard to tissue donation, drawing on the views of professionals, donors and the public (as potential donors). See references 28 and 29.

  2. It is interesting to speculate what the situation would be if there was a contract to the contrary, and whether this would be legally enforceable. There are a number of potential impediments to the enforceability of an agreement dealing with the donation of tissue, including public policy objections based on aversion to commodification of the human body and research participation, and the difficulty of ordering specific performance of such an agreement: for discussion, see Nicol, D. Property in human tissue and the right of commercialisation: The interface between tangible and intellectual property, Monash University Law Review, 2004; 30, 139–164 at 157–158.

  3. See chapter 20 of the Essentially yours Report, Recommendation 20-1. Instead, the Report recommended the protection of genetic samples through extension of privacy legislation (see Recommendations 8-1 – 8-4), and also the introduction of a new criminal offence in respect of non-consensual genetic testing (see Recommendation 12-1) discussed below.

  4. But see Human Genetics Commission, (2000). Public attitudes to human genetic information. London, MORI Social Research, which reported that a majority of respondents were of the view that fresh consent should be sought before new research is conducted on existing samples held in ‘medical genetic databases.’ This terminology was used to differentiate medical from police genetic databases but research human genetic databases for which general consent is sought for inclusion of samples at the outset, may be regarded differently by the public.

  5. Note, however, the case of Moore discussed above, where the absence of any consent to the use for research purposes was the basis for a successful claim of breach of fiduciary duty.

  6. The revised National statement contains a new chapter on databanks (3.2) but fuller NHMRC guidelines on human genetic databanks are planned: see Trent R. (Chair of the Human Genetics Advisory Committee of Australia), The role of the Human Genetics Advisory Committee (HGAC). Paper for the Centre for Law and Genetics and Australian Centre for Emerging Technologies and Society Joint Symposium, ‘Human biotechnology and public trust’, November 2006.

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Acknowledgement

I would like to thank Dianne Nicol for her helpful comments on an earlier version of this paper.

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  1. Centre for Law and Genetics, Faculty of Law, University of Tasmania, Private Bag 89, Hobart, 7001, Tasmania, Australia

    Margaret Otlowski

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Correspondence to Margaret Otlowski.

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Otlowski, M. Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint. Bioethical Inquiry 4, 135–150 (2007). https://doi.org/10.1007/s11673-007-9055-4

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