Tokenism in Clinical Trials for Rare Disease Patients: Beyond Representation
Tokenism in Clinical Trials for Rare Disease Patients: Beyond Representation Introduction In the realm of medical research and clinical trials, inclusivity and representation are crucial pillars for ensuring the efficacy and safety of treatments. However, when it comes to rare diseases, such as Huntington's disease, cystic fibrosis, or amyotrophic lateral sclerosis (ALS), the challenges of inclusion can become even more pronounced. Tokenism, a term often used to describe superficial or symbolic inclusion of minority groups, can unfortunately manifest in clinical trials for rare disease patients, posing significant ethical and practical concerns. Rare diseases affect a small percentage of the population, making it inherently difficult to conduct robust clinical trials due to the limited pool of eligible participants. Despite the rarity of these conditions, they can have profound and debilitating effects on individuals and families. Consequently, the need for effective treatments i...