关键词: gene therapy health equity human subjects research sickle cell disease translational bioethics translational research translational science

Mesh : Humans Translational Research, Biomedical Health Equity Anemia, Sickle Cell / genetics therapy Translational Science, Biomedical Policy

来  源:   DOI:10.1002/eahr.500211

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.
摘要:
2023年8月,美国国家科学院,Engineering,和医学及时发表了题为“迈向健康和医学的公平创新:一个框架”的报告。\"这里,我们回顾了报告的一些主要贡献,关注公平的两个维度:投入公平和部署公平。然后,我们以治疗镰状细胞病(SCD)的新基因疗法为例,作为转化研究中投入和部署公平性的案例研究。SCD案例研究表明,需要一种对生活经验和临床现实以及高度经济和政策复杂性的深刻理解的转化生物伦理学。
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