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Ethical Questions Linked to Rare Diseases and Orphan Drugs - A Systematic Review.

Jaroslav KacetlPetra MaresovaRaihan MaskuriyAli Selamat
Published in: Risk management and healthcare policy (2020)
A strictly global approach would be the most appropriate way to deal with rare diseases. Nonetheless, international, let alone global, cooperation seems to be completely beyond the reach of the current international community, although the EU, for instance, has a centralized procedure for labelling orphan drugs. This deficit in international cooperation can be partly explained by the fact that the current technologically globalized world still lacks globally accepted ethical values and rules. This is further aggravated by unresolved international and intercultural conflicts. In addition, the sub-interests of various parties as well as the lack of desire to deal with other people's problems need to be taken into account. The aforementioned problems are difficult to avoid. Nevertheless, let us be cautiously optimistic. At least, there are people who raise ethical questions about rare diseases and orphan drugs.
Keyphrases
  • mental health
  • decision making
  • healthcare