Is global collaboration needed to tackle orphan diseases?

Although global collaboration on rare and orphan disease would be the best approach, several ethical factors stand in the way of international cooperation.

In this systematic review, researchers used relevant peer-reviewed articles related to rare diseases. Five main ethical issues linked to rare diseases and orphan drugs were identified, including:

-Funding research and development

-Compassion in decision-making

-Limitations in labelling diseases as rare

-global cooperationa

-establishing decision-makers

The authors concluded that although a global approach to rare diseases would be the most beneficial, it does not seem to be in reach due to a lack of “accepted ethical values and rules,” that are made worse by international and cultural conflicts.

“The aforementioned problems are difficult to avoid. Nevertheless, let us be cautiously optimistic,” the authors wrote. “At least, there are people who raise ethical questions about rare diseases and orphan drugs.”

Reference

Kacetl J, Marešová P, Maskuriy R, Selamat A. Ethical questions linked to rare diseases and orphan drugs – A systematic review. Risk Manag Healthc Policy. 2020;13;13:2125-2148. doi: 10.2147/RMHP.S260641. PMID: 33116992; PMCID: PMC7568613.