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Updated: Jun 28, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Translational Research and Health Equity: Gene Therapies for Sickle Cell Disease as a Case Study
Mary A Majumder1, Titilope Fasipe2
1Dalton Tomlin Professor of Medical Ethics and Health Policy in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine.
Abstract:
In August of 2023, the National Academies of Science, Engineering, and Medicine published a timely report titled "Toward Equitable Innovation in Health and Medicine: A Framework." Here, we review some of the key contributions of the report, focusing on two dimensions of equity: input equity and deployment equity. We then use the example of new gene therapies to treat sickle cell disease (SCD) as a case study of input and deployment equity in translational research. The SCD case study illustrates the need for a kind of translational bioethics with deep understanding of lived experiences and clinical realities as well as a high degree of economic and policy sophistication.
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