{"title":"转化研究与健康公平:镰状细胞病基因疗法案例研究","authors":"Mary A. Majumder, Titilope Fasipe","doi":"10.1002/eahr.500211","DOIUrl":null,"url":null,"abstract":"<div>\n \n <p>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.</p>\n </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 3","pages":"34-39"},"PeriodicalIF":0.0000,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Translational Research and Health Equity: Gene Therapies for Sickle Cell Disease as a Case Study\",\"authors\":\"Mary A. Majumder, Titilope Fasipe\",\"doi\":\"10.1002/eahr.500211\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n <p>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.</p>\\n </div>\",\"PeriodicalId\":36829,\"journal\":{\"name\":\"Ethics & human research\",\"volume\":\"46 3\",\"pages\":\"34-39\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-04-17\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Ethics & human research\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/eahr.500211\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"Social Sciences\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Ethics & human research","FirstCategoryId":"1085","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/eahr.500211","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"Social Sciences","Score":null,"Total":0}
Translational Research and Health Equity: Gene Therapies for Sickle Cell Disease as a Case Study
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.