ELSIcon2022 Paper: “Big bioethics” research: Is the ELSI community ready?

ELSIcon2022 • Paper • May 31, 2022

Joel Pacyna, Richard Sharp

ELSI research has traditionally sought to give patients greater voice—especially patients at the margins of healthcare who may be impacted by genetic technologies in disproportionate ways. Consistent with this goal, ELSI researchers who conduct empirical studies have served as an important counterbalance to the highly technical nature of genomic research, focusing on the lived experiences of patients who encounter new genomic technologies. We argue that if ELSI researchers are to continue to give patients a voice, they must adapt their empirical methods to the changing scale of translational genomic research, which is increasingly focused on the creation of large research datasets and biorepositories (such as the All of Us Research Initiative and the eMERGE IV consortium), which touch many thousands of research participants. In these settings, there is an urgent need for “big bioethics research” – research which leverages the scale of modern translational research. We suggest that ELSI researchers may need to increase their expertise in research methods that are suited to this shift in the scale of genomic research. We offer a vision for “big ELSI” research, describing both its potential benefits and challenges.