Rare diseases generally receive less funding for their medical research and treatments than other diseases. Apart from well-known scientific and economic explanations, there are two major ethical positions regarding this fact, the one that approves it for reasons of utilitarian ethics, and the one that condemns it by insisting on egalitarian and individual rights reasons. In this article, I analyse the problems of both types of moral justification, and propose an ethical alternative based on the idea of political fraternity that, applied to rare diseases, avoids the worst consequences of both utilitarianism and the language of individual rights to health and mere egalitarianism.
|Translated title of the contribution||Political Fraternity and Rare Diseases|
|Number of pages||18|
|Publication status||Published - 10 Mar 2021|