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Rare diseases, most of which have a genetic basis, collectively affect an estimated 300 million individuals worldwide and are associated with significant morbidity and mortality. Although less than 10% of rare diseases currently have an approved therapy, advances in gene and gene-targeted therapies have brought hope of effective—or even curative—treatment. While the potential for cure has prompted justifiable excitement, the high upfront cost of many of these therapies also raises complex ethical and policy issues.

Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90% of U.S. patients self-identify as Black and experience neglect as a result of structural racism, until recently, the condition has received very little research funding and minimal attention from the medical research community. Recent advances in human genetics have reinvigorated interest in the genetic underpinnings of SCD and the potential to “cure” it with novel genetic therapies.

All athletes playing on college sports teams governed by the National College Athletic Association (NCAA) are required to confirm their Sickle Cell Trait (SCT) status by taking a blood test or by providing prior test results. This SNAPSHOT explores the history, successes, and limitations of this mandatory SCT screening program, which was put in place to allow student athletes with SCT to safely participate in sports.

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