Abstract

In this PhD thesis I investigate the right of self-determination meant as individual right to decide about our own life or health. More precisely, the research examines how biotechnologies influence the concept of self-determination in legal theory and practice. My attention will be focused both on beginning-of-life issues and end-of-life issues. Among the first ones, I deepen the questions about preimplantation genetic diagnosis, wrongful life actions and embryonic stem cell sampling. Among the second ones, the study takes into account the questions about the right to refuse medical treatments and advance health care directives, with specific references to the Welby case and the Englaro case. The former deals with self-determination of conscious patients, the latter deals with self-determination of unconscious patients. As for the research method, firstly I analyze relevant judicial decisions or responses of the Italian Ethics Committee, comparing them with Italian law and also with foreign judicial decisions on similar problems. Secondly I suggest some philosophical remarks, moving from biolaw to bioethics. From a bioethical perspective, I assume that, in the cases I analyzed, autonomy is characterized by individualism, rationalism and voluntarism. These attitudes typically belong to a modern approach. Such a conception of autonomy deeply influences the right of self-determination. Therefore, my thesis tends to show that the plea for self-determination, which is very frequent in biolaw, is a product of modern voluntarism. Moreover, a consequence of such a perspective results in the metamorphosis of self-determination into hetero-determination. This phenomenon can be found in all the bioethical issues I examined: wrongful life actions, for example, hide parental decisions for abortion behind an impossible, though invoked, self-determination of the foetus; on the other hand, the so called ‘substituted judgement’, which tries to reconstruct the will of unconscious patients, can hide the will of surrogate decision-makers behind the self-determination of the patient. Absolutizing individual will can not protect self-determination from hetero-determination. Rather, it contributes to foster dynamics of hetero-determination. In this way, the individual right of self-determination can conceal someone else’s right to determine our life or health: a right of (self-)determination