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This is a Literature Review study.

September 10, 2025

A general overview of ethical issues encountered in rare diseases

Key Points

The ethical issues in rare diseases complicate patient care and access to necessary treatments.
Access to orphan drugs is hindered by high costs and low profitability, contributing to ethical dilemmas.
Patients often experience prolonged diagnosis periods, which negatively affects their quality of life.
Lack of medical information leads to difficult decisions for both physicians and caregivers of patients.

Abstract

Rare diseases are diseases that are seen quite rarely in society with a prevalence of 1/2000. However, this prevalence varies from country to country. These diseases are serious, chronic, and reduce the quality of life and expectation. The lack of sufficient medical and scientific information about them prolongs the diagnosis process. The prolongation of the diagnosis period makes it difficult for the physician to make a diagnosis in the clinic, while the time works to the detriment of the patient. Since their drugs are not profitable drugs, their development has been neglected and they have been defined as orphan drugs. In addition to the difficulty of accessing drugs and the high costs, the difficulty of caring for these diseases brings psychological, social and economic burdens to the person or persons providing care to the patient. Such difficulties bring many ethical problems. In this study, some ethical issues encountered in rare diseases will be discussed.

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