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Justice, diversity, and research ethics review

It is time for institutional review boards and research ethics committees to address the ethics of inclusion The disproportionate impact of COVID-19 on certain populations, such as Black, Latinx, and Indigenous populations in the United States, has focused attention on inequalities in health and on...

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Published in:Science (American Association for the Advancement of Science) 2021-03, Vol.371 (6535), p.1209-1211
Main Authors: Strauss, David H, White, Sarah A, Bierer, Barbara E
Format: Article
Language:English
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Summary:It is time for institutional review boards and research ethics committees to address the ethics of inclusion The disproportionate impact of COVID-19 on certain populations, such as Black, Latinx, and Indigenous populations in the United States, has focused attention on inequalities in health and on the need to increase enrollment of racial and ethnic minorities and other underrepresented groups in biomedical research ( 1 ). Yet too often, in the United States and globally, participant enrollment in research has not reflected the demographic composition of the general population, those affected by the health conditions being studied, or those for whom the investigational product is intended ( 2 ), with racial and ethnic minorities and the young and the elderly, among others, being consistently underrepresented ( 3 ). Underlying causes for this underrepresentation have been described ( 4 , 5 ), but change has been slow. Notwithstanding the roles of other stakeholders in addressing this issue, we maintain that the specific value of institutional review boards (IRBs) and research ethics committees (RECs) in promoting diversity has been underrecognized and their authority underutilized. Here, we substantiate the role of and outline practical steps for the IRB and REC (hereafter “IRB”) to help achieve greater diversity in clinical research.
ISSN:0036-8075
1095-9203
DOI:10.1126/science.abf2170