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

Author:

Majumder Mary A.1,Fasipe Titilope2

Affiliation:

1. Dalton Tomlin Professor of Medical Ethics and Health Policy in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine

2. Assistant professor in the Division of Hematology/Oncology in the Department of Pediatrics at Baylor College of Medicine and the codirector of the Sickle Cell and Thalassemia Program at Texas Children's Hospital

Abstract

ABSTRACTIn 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.

Publisher

Wiley

Reference26 articles.

1. Ibid. 20.

2. Ibid. 47.

3. Ibid. 60 see also discussion on p.92.

4. Ibid. 41.

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