Making Human Rights Ordinary in the Bio and Nanotech Era

Abstract

This paper addresses the issue of science related human rights. It begins by showing how science was central yet paradoxically peripheral to the Universal Declaration of Human rights; this is followed by a discussion of the negligible impact of the Nuremberg Code, and the patient rights therein encoded, in the immediate post war. Two conclusions are drawn from these preliminary explorations. First, the interconnection between human rights and science was mediated via the sacralisation of the latter's autonomy from social capture, which in turn limited the types of science related human rights claims that could be made. Second, the explanatory gaze of social scientists should be focused on exploring the concrete configuration of social, political, economic and cultural forces that provide human rights with social efficacy. In other words human rights need to be conceptualised as ordinary objects of sociological analysis. These two points are further elaborated through a historical case study of the emergence of patient rights in the US, the most important science related human rights to date. This is followed by a discussion on the prospects for science related human rights in the bio and nano era by showing how the knowledge society, risk, scientific citizenship and ELSIfication (i.e. the development of research programs concerned with eliciting ethical, legal and social implications of genomics, nanotechnology, etc.) have weakened, but by no means done away with science's once sacred autonomy. This means that there are currently new opportunities for the emergence of science related human rights claims. It is concluded that science related human rights also raise important issues regarding hybridity and the conceptualisation of human vulnerability.