EVOLUTIONS IN THE FIELD OF BIOETHICS
Panel formed with individual proposals.
The article focuses on “nonconsensual genetic use“: The use of the “singular genome“—namely, the genome of a single individual—by private entities (e.g., researchers and personal adversaries), without the knowledge or consent of the person from whom it was taken. The Article maps the legal landscape in the United States and explores how the genome is conceptualized in briefs, court decisions, and legislation. The analysis reveals two main findings. First, there is a tension between two fundamentally different conceptions of the genome. The genome is conceptualized as either a “public good,“ governed by public health law - or as a “private good,“ governed by a private property regime. This binary division is superficial and can lead to harmful outcomes. Second, parties in court proceedings, judges, and legislatures are using the legislation and court proceedings to “negotiate“ the value of the genome. This indicates that the governance of the genome is de facto a function of power.
The issue of legislative omission arises as a problem linked to the need for legal certainty and the consequent observance of the normative precept. The response to the legislator's inertia implies an institutional conception from which it is possible to organize the individual powers, giving a characterization to the form of State and government. One of the most striking examples is Law 40/2004, through which the Italian legislature has regulated medically assisted procreation. The complexity of the matter involving ethical and cultural principles as well as scientific/technological progress has caused many difficulties both at the time of the request for specific protection and at the time of its application. The law turns out to be dated, unclear and with great gaps. The impossibility of forcing the political body to adopt an active behaviour by issuing a new law, has led to the intervention of the jurisdictional power through judgements that have literally rewritten this law.
The Irish Supreme Court has in recent years had to consider cases dealing with end-of-life medical care, and particularly the sometimes fine distinction between humane end-of-life care and euthanasia. The Court has held that this distinction turns to a large extent on the intentions of the medical practitioners involved.“ In this paper, we consider the normative underpinnings of these cases. We argue that explanations that focus on the intentions of medical practitioners fail to justify the jurisprudence. Such intentions are epistemically inaccessible, and doctors may have conflicting intentions. Secondly, we argue that we can make better sense of these cases by appealing to the moral value of principled consistency. Judges try to determine the principles of political morality that underpin assisted dying cases and apply them consistently across relevantly similar cases. As part of this process, they attribute intentions to doctors based on an analysis of the moral role of the doctor.