Translational Research and Health Equity: Gene Therapies for Sickle Cell Disease as a Case Study.

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.