Justice and vulnerability in research and therapy for rare diseases

Persons with rare diseases are frequently labeled as vulnerable, a classification that seams self-evident given their circumstances: they often endure severe conditions associated with significant disabilities and reduced life expectancy. Central to current debates is the idea that the rarity of these diseases amplifies vulnerability, thereby generating to moral obligations, particularly in light of the exorbitant costs of developing treatments.

However, there remains a lack of in-depth analysis that clearly defines this vulnerability and establishes a solid foundation for the corresponding moral duties. A more nuanced understanding of the specific vulnerability faced by individuals with rare diseases is therefore essential, especially to inform well-grounded normative conclusions.

The project employs a critical concept of vulnerability to examine the justice-related social structures that shape the lives of persons with rare diseases. Building on this analysis, it will develop a robust framework for assessing moral obligations towards these individuals, grounded in their specific forms of vulnerability.

Ultimately, the analysis will articulate normative conclusions regarding the moral duties owed to this group, emphasizing the need for a comprehensive understanding of  vulnerability as a prerequisite for justice, extending the discussion beyond distributive justice alone.