Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint
- 92 Downloads
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.
KeywordsTissue and organ procurement Genetic research Tissue banks Trust Public policy
I would like to thank Dianne Nicol for her helpful comments on an earlier version of this paper.
- 2.Australian Law Reform Commission and Australian Health Ethics Committee (ALRC/AHEC) (2003). Report No. 96, Essentially yours: The protection of human genetic information in Australia. Sydney: Australian Law Reform Commission.Google Scholar
- 3.National Statement on Ethical Conduct in Human Research. National Health and Medical Research Council (NHMRC) (2007). Available online from http://www.nhmrc.gov.au/publications/synopses/e72syn.htm. Accessed 14/05/2007.
- 5.Shorter Oxford English dictionary on historical principles (2002). 5th edition. Oxford: Oxford University Press.Google Scholar
- 6.Murray, T. (1987). On the human body as property: The meaning of embodiment, markets and the meaning of strangers. Journal of Law Reform, 20, 1055–1088.Google Scholar
- 7.Tutton, R. (2004). Person, property and gift: Exploring languages of tissue donation to biomedical research. In R. Tutton & O. Corrigan (Eds.), Genetic databases: Socio-ethical issues in the collections and use of DNA. London: Routledge, Chapter 2.Google Scholar
- 8.Korts, K., Weldon, S. & Guâmundsdóttir, M. (2004). Genetic databases and public attitudes: A comparison of Iceland, Estonia and the UK. TRAMES, 8, 131–149.Google Scholar
- 10.Barlow-Stewart, K., Taylor, S., & Otlowski, M. (2005). Knowing your genes. In S. Wilson, G. Meagher, & R. Gibson, et al. (Eds), Australian social attitudes: The first report. Sydney: University of New South Wales. Chapter 12.Google Scholar
- 11.Cousins, G., McGee, H., & Ring, L., et al. (2005). Public perceptions of biomedical research: A survey of the general population in Ireland. Health Services Research Centre, Royal College of Surgeons in Ireland.Google Scholar
- 13.UNESCO Universal declaration on the human genome and human rights (1997). Available online: http://portal.unesco.org/shs/en/ev.php-URL_ID=1881&URL_DO=DO_TOPIC&URL_SECTION=201.html. Accessed 14.5.2007.
- 14.UNESCO International declaration on human genetic data (2003). Available online: http://portal.unesco.org/shs/en/ev.php-URL_ID=1882&URL_DO=DO_TOPIC&URL_SECTION=201.html. Accessed 14.5.2007.
- 15.Nicol, D. (2004). Property in human tissue and the right of commercialisation: The interface between tangible and intellectual property. Monash University Law Review, 30, 139–164.Google Scholar
- 16.Laurie, G. (2002). Genetic privacy: A challenge to medico–legal norms. Cambridge: Cambridge University Press, pp 315–318.Google Scholar
- 17.Goold, I. (2005). Sounds suspiciously like property treatment: Does human tissue fit within the common law concept of property? University of Tasmania Law Review 7 (Special issue: The mind, the body and the law) pp. 62–86.Google Scholar
- 18.Skene, L. (2002). Arguments against people legally ‘owning’ their own bodies, body parts and tissue. Macquarie Law Journal, 2, 165–176.Google Scholar
- 19.Moore v Regents of the University of California (1990). 51 Cal 3d 120 (Cal).Google Scholar
- 20.Kelly, R. v. (1998). 3 All ER 741, 750.Google Scholar
- 21.Greenberg v Miami Children’s Hospital (2003). 264 F Supp. 2d 1064 (Fla).Google Scholar
- 22.Washington University v William Catalona (2006). 437 F Supp 2d 985.Google Scholar
- 25.Martin, P., Kaye, J. (1999). The use of biological sample collections and personal medical information in human genetic research. Prepared for the Wellcome Trust.Google Scholar
- 26.Powles, J. (2006). Rights attaching to human tissue samples in large genetic databases and the practical ramifications for consent and commercialisation. Honours thesis. Faculty of Law, University of Western Australia, and Western Australian Institute for Medical Research.Google Scholar
- 27.Magnusson, R. (2000). The use of human tissue samples in medical research: Legal issues for HRECs. Journal of Law and Medicine, 7, 390–403.Google Scholar
- 28.Fleming, J. (2006). Perspectives on tissue banks and human genetic research databases: implications for research and regulatory reform. Paper for the Centre for Law and Genetics and Australian Centre for Emerging Technologies and Society Joint Symposium, ‘Human biotechnology and public trust,’ Melbourne, November.Google Scholar
- 29.Fleming, J. (2006). Issues with tissue: perspectives of donors and the public towards tissue banks and human genetic research databases. Abstract no. 814, Proceedings of the Australian health and medical research congress, Melbourne.Google Scholar
- 32.Kaye, J. (2002). Broad consent: The only option for population genetic databases? In G. Árnason, S. Nordal, & V. Árnason (Eds.), Blood and data: Ethical, legal and social aspects of human databases, chapter 11. Reykjavík, Iceland: University of Iceland Press.Google Scholar
- 33.Council of Europe (1997). Convention on human rights and biomedicine.Google Scholar
- 34.HUGO Ethics Committee (2002). Statement on genetic databases.Google Scholar
- 35.Commonwealth Attorney General’s Department (2005). Australian Law Reform Commission and Australian Health Ethics Committee Report, Essentially yours: The protection of human genetic information in Australia: Government response to recommendations, Canberra, Commonwealth of Australia.Google Scholar
- 37.HUGO Ethics Committee (1996). Statement on the principled conduct of genetic research.Google Scholar
- 38.HUGO Ethics Committee (2000). Statement on Benefit Sharing.Google Scholar
- 42.Corrigan, O. (2006). Property matters: Public and private venture in human genetic databases. Paper for the Centre for Law and Genetics and Australian Centre for Emerging Technologies and Society Joint Symposium, ‘Human biotechnology and public trust,’ Melbourne, November.Google Scholar
- 45.Creation and governance of human genetic research databases (2006). Paris. OECD.Google Scholar