Virtual Penn Bioethics Seminar (PBS): "Research Ethicists Work Beyond the IRB to Integrate Justice-Based Considerations"- Emma Tumilty, PhD / Elise Smith, PhD

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

Emma Tumilty, PhD

Director of Graduate Studies, Institute for Bioethics and Health Humanities
University of Texas Medical Branch at Galveston

Elise Smith, PhD

Assistant Professor in the Department of Bioethics and Health Humanities 
University of Texas Medical Branch at Galveston

Justice-based issues and community concerns are central to research ethics. Although the research ethics literature highlights how Institutional Review Boards (IRBs) should address certain types of justice concerns, in practice significant limitations hinder meaningful changes to protocols and ensuing research practices. In this presentation, we argue that greater attention should be paid to what research ethicists can do upstream that is effective but presently underutilized. Based on the accumulated experience of the authors in research ethics consultation work in a Clinical and Translational Science Award (CTSA) Institution, we have found three alternative spaces that show more promise for providing justice-based outcomes. We will compare these three spaces to the IRB process and highlight how they allow for access to a broader set of options to integrate justice and community concerns. We conclude by developing research ethics consultation evaluation practices that can assess downstream implications of justice-based interventions.