Within the normative puzzles that have formed around the biobanking of human biological materials (HBMs) and information, two strategies have been adopted in the US and in Europe; these are distinguished by their focus on two main legal concepts: individual property rights and individual autonomy – mostly interpreted as the right to privacy. The US addressed the question of proprietary interests in the human body materials explicitly and directly. In fact, the U.S. justice system has always explicitly defined the question in terms of property, removing privacy from the equation essentially as a way to “avert the danger” of the proprietary issue. The tendency has always been to negate the uncertain “proprietary interests” associated with the bodies of private citizens, and to use the much stronger and more consolidated "proprietary rights", meaning intellectual property; or else to justify the acquisition of control over the HBMs by research and market structures through a presumption of donation and subsequent abandonment of human tissues by the sources of those tissues. In Europe, the approach went instead in the direction of removing the corporeity of HBMs, seeing them instead as symbolically representing the most secure limits of human dignity, according to which the body is “priceless.” The opaqueness and unworkability of this is made clear by the fact that negation of the marketability of the body went hand in hand with the institutionalization of the European tissue market. There are two inconvenient principles inherent in these two perspectives. The first is the reduction of the means of control of HBMs to one proprietary, operative model, where all powers are allocated to the owner-subject and the object in itself lacks any ultimate value, be it individual or even social. This model has demonstrable limits which can be seen, for example, if it is applied to the environment, which has several affinities with the theme of tissues. The second principle concerns the misleading prevalence of language of individual autonomy, when the actual values in question instead reflect public space, collective dimensions, and a sense of scientific citizenship – which are taken as recognition of the rights of citizens to participate, even if it is epistemic, in public decisions.
|Titolo della pubblicazione ospite||Ethics, Law and Governance of Biobanking. National, European and International Approaches|
|Numero di pagine||18|
|Stato di pubblicazione||Pubblicato - 2015|