Journal of Bioethical Inquiry, Volume 4, Number 2 (July 2007)
Guest Editor: Cameron Stewart
The use of human tissue raises ethical issues of great concern to health care professionals, biomedical researchers, ethics committees, tissue banks and policy makers because of the heightened importance given to informed consent and patient autonomy. The debate has been intensified by high profile scandals such as the “baby hearts” debacle and revelations about the retention of human brains in neuropathology laboratories worldwide. Respect for patient’s rights seems, however, to impede research and development of clinical knowledge in contemporary health care. The Common clinical endeavour argument and a Presumption for beneficial use argument suggest that the use of tissues for research and teaching in contemporary health care can respect patients and their values in multicultural communities where there are provisions for oversight and for opting not to contribute, both of which should respect the diverse views of different ethnic or cultural groups.
This paper outlines the current common law principles that protect people’s interests in their bodies, excised body parts and tissue without conferring the rights of full legal ownership. It does not include the recent statutory amendments in jurisdictions such as New South Wales and the United Kingdom. It argues that at common law, people do not own their own bodies or excised bodily material. People can authorise the removal of their bodily material and its use, either during life or after their death, for medical or scientific purposes. Researchers who acquire human bodies, body parts or tissue pursuant to such an authority have a right to possess and use them according to the authorisation they have been given, but their rights fall short of full ownership because they are limited in the way that they can use the material. The legal rights of researchers who develop intellectual property and biological products from excised human tissue can be adequately protected by existing common law principles without the need for a new legal principle that people own body parts and tissue removed from their bodies.
Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint
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.
Jocelyn Downie, Matthais Schmidt, Nuala Kenny, Ryan D’Arcy, Michael Hadskis, and Jennifer Marshall
In this paper, we first briefly describe neuroimaging technology, our reasons for studying magnetic resonance imaging (MRI) technology, and then provide a discussion of what we have identified as priority issues for paediatric MRI research. We examine the issues of respectful involvement of children in the consent process as well as privacy and confidentiality for this group of MRI research participants. In addition, we explore the implications of unexpected findings for paediatric MRI research participants. Finally, we explore the ethical issues concerning advances in functional MRI. This paper aims to provide a clear description of priority paediatric MRI research ethics issues to make some preliminary recommendations regarding next steps.
Corpus Interruptus: Biotech Drugs, Insurance Providers and the Treatment of Breast Cancer and Erratum
Jane E. Schultz
In researching the biomedically-engineered drug Neulasta (filgrastim), a breast cancer patient becomes aware of the extent to which knowledge about the development and marketing of drugs influences her decisions with regard to treatment. Time spent on understanding the commercial interests of insurers and pharmaceutical companies initially thwarts but ultimately aids the healing process. This first-person narrative calls for physicians to recognize that the alignment of commercial interests transgresses the patient’s humanity.
Yvette E. Pearson
In this paper I examine the prevailing assumption that there is a right to procreate and question whether there exists a coherent notion of such a right. I argue that we should question any and all procreative activities, not just alternative procreative means and contexts. I suggest that clinging to the assumption of a right to procreate prevents serious scrutiny of reproductive behavior and that, instead of continuing to embrace this assumption, attempts should be made to provide a proper foundation for it. I argue that the focus of procreative activities and discourse on reproductive ethics should be on obligations instead of rights, as rights talk tends to obfuscate recognition of obligations toward others, particularly those who bear the most significant burdens of the procreative process. I examine some possible foundations of a right to procreate as well as John Robertson’s thoughtful account of “procreative liberty” but conclude that at the present time there exists no compelling account of a right to procreate. Finally, I conclude that in the absence of a satisfactory account of a right to procreate, we should refrain from grounding practices or polices on the assumption that there is such a right.
This article was originally published in the Journal of Bioethical Inquiry 4(1): 77–78, doi:10.1007/s11673-007-9038-5. It is reprinted here for the sake of coherence.
Carrie Ritchie, Peter Baker, Ian Buchanan, and Peter Magee