Looking Beyond the IRB

Looking Beyond the IRB
Editorial
Quinn Waeiss, Margaret Levi, Leif Wenar, David Magnus
The American Journal of Bioethics, 29 January 2025
Excerpt
…Looking to the informed consent process to address group harms also brings serious complications. The first is defining the groups that could experience harm. Without careful thought to the identification of these groups, researchers run the risk of using social groups as inappropriate proxies for the groups actually under study—and those ultimately at risk of harm (Juengst Citation1998). Blanket calls for community engagement in data-centric research without careful consideration of the communities in question seems likely to reinforce the incorrect use of population descriptors in fields like genomics. Doerr and Meeder (Citation2025) highlight several additional complexities with appropriately demarcating groups in data-intensive research, including groups that researchers can analyze into existence. Even if groups are properly identified, we still need to consider the additional burdens placed on communities and their members through community engagement in the research process, and how burdens could compound if such engagement were mandatory…