Stephanie Kraft, JD - University of Washington

ELSIconversations - March 5, 2021

Demonstrating respect for research participants is not only an ethical imperative but, if done effectively, it may support trusting relationships between research teams and participants. Respect for persons may be especially important for how researchers engage with individuals from historically underrepresented groups, who often have lower trust in research due to prior and ongoing discrimination and exclusion. Yet there is little known about how to demonstrate respect in genomics research, which may result in missed opportunities to improve diversity among participants. In this presentation, we will examine how participants from diverse backgrounds define ‘respect’ and what role it plays in their enrollment decisions; we will also offer practical considerations for genomics researchers to more effectively demonstrate respect. We conducted individual interviews (n=40) with participants in a translational genomics study of hereditary cancer risk among ethnically, socioeconomically, and linguistically diverse primary care patients. Four approaches were identified for research teams to meaningfully demonstrate respect: (1) minimize barriers to participation to support inclusion of individuals from diverse backgrounds; (2) train research staff to provide support and empathy to prospective participants; (3) provide clear expectations about the study, including its social value; and (4) clarify and protect prospective participants’ autonomy rights. In this presentation, we will describe the contours of these broad considerations and identify specific interventions, informed by stakeholder feedback, that have potential to better convey respect to participants. Through this work, we aim to offer concrete guidance for genomics researchers to improve engagement with individuals from groups historically underrepresented in research.