Research Ethicists Work Beyond the IRB to Integrate Justice-Based Considerations

Abstract: Justice-based issues and community concerns have been highlighted as central in research ethics. While there is an expectation that Institutional Review Boards (IRBs) can address certain types of justice concerns, in reality there are impediments in determining and promoting required justice-based considerations to protocols. We argue that attention should be redirected to what research ethicists can do upstream that is effective but is presently underutilized. Based on the accumulated experience of authors in research ethics consultation work (broadly conceived) in a Clinical and Translational Science Award Institution, we have identified the following three alternative spaces that yield more effective justice-based outcomes. First, research ethicists can integrate early into grant and protocol development to help researchers consider alongside other ethics issues justice-based issues from the outset. This includes designing and budgeting for the study to make diversity and accessibility feasible. Secondly, ethicists may play a constructive role in building trust between the increasing number of community engagement activities and boards where scientists can find an audience to better build community values into their work. This approach can increase the ability of researchers to implement their project directly in communities which increases community benefits. Third, policy-based research ethics consultation with institutional leaders is often more effective at changing university policies that hinder inequitable research practices. By comparing the three spaces to the IRB process, we will highlight how research ethicists can work in collaboration with other stakeholders to play a key role in upstream efforts to ensure just research practices.

Elise MR Smith, PHD – Assistant Professor, Bioethics & Health Humanities, University of Texas Medical Center