Health Research, (Bio)Technology, Regulation & Values: Operationalising Socio-Moral Values in the Legal Setting
Harmon, Shawn H.E.
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The rapidly evolving biosciences increasingly rely on the analysis, manipulation and reproduction of the human body. In the health setting, novel biotechnologies offer new methods/avenues for the investigation of wellbeing and the treatment of illness, but they do not just expand the clinician’s toolbox, they increase the very scope of her work. By offering new (and formerly invisible) measures for health, they have created new categories of illhealth (ie: expanding the ways in which humans can be classified as abnormal, unhealthy, or diseased). In doing so, they contain huge marginalising potential. And they are evolving at a pace that the law cannot match. Given this, important questions arise such as: What institutions are acting in this field and what is guiding them? How is health-related research being encouraged and regulated? How does the human subject figure in the bioeconomy? What values are we claiming and vindicating under existing regulatory regimes? What values ought we be emphasising bearing in mind social needs and individual rights? The body of work that forms this submission represents five years of socio-legal research and evolving thought on the topic of how values inform the law and are operationalised through the law and legal institutions. While the publications relied on are diverse, they all pursue small facets of this value inquiry. The first theme addressed – international values and actors – is composed of three papers which explore broad internationally shared values claimed in legal instruments such as the Universal Declaration on the Human Genome and Human Rights and the Universal Declaration on Bioethics and Human Rights, and institutions such as UNESCO and the EPO. A range of values emerge from these. Papers under the second theme – human participation in health research – explore how we access and use the human body in the modern biosociety/bioeconomy, and how we might better encourage subject participation in, and equitable benefit from, the biomedical research setting. Focusing on population biobanking, it assesses who has rights in the body and what those rights are, and how the existing environment interacts with our claimed values. Papers under the third theme – encouraging stem cell research in Argentina – explore governance instruments and their significance for realising claimed or desired values. These papers are informed by original empirical work conducted in Argentina over a 24-month period during which the Argentine government grappled with the realities of the new biosociety and the (perceived) need to facilitate bioscience research and medical treatment using human tissue. While these papers represent only part of the scholarship deriving from this project, they deploy new evidence on the existing environment and the way forward in that jurisdiction. As argued in the Critical Review, these publications form a broadly coherent and farranging body of interdisciplinary work which persistently questions the link between law and values and how we govern modern bioscience. While there are necessarily descriptive elements, the whole is critically analytical and normatively suggestive. In addition to summarising the aims, objectives, methodology, results and conclusions of these works, and indicating how they form a coherent body of work, the Critical Review goes further. Drawing on evolving thinking and recent scholarship, it argues for a regime less reliant on instruments and more reliant on expert institutions informed by, and charged with protecting, socio-moral values informed by the human rights paradigm.