ELSIcon2022 • Paper • May 27, 2022
Jenny Reardon, Stephanie M. Fullerton, and Sandra Soo-Jin Lee
Increasingly, public and private funders have come to recognize the critical significance of incorporating ethical and societal analysis into the design of science, technology, engineering and math (STEM) research. The NIH Ethical, Legal and Social Implications (ELSI) program has for over three decades supported the integration of bioethicists, social scientists, legal scholars and policy makers onto genomic research teams. Despite this public investment, there is little guidance on best practices for fostering this integration or for evaluating its impact. Researchers with expertise in ELSI are frequently asked to participate in research projects in name only or near the end of the writing of research proposals, leading to research in which ethical considerations are potentially marginalized or left under-explored. Even when such research is carefully designed in advance, it is often not well-understood by STEM researchers, or may be viewed as slowing down scientific progress, rather than as an integral and central to achieving scientific objectives. This can lead to researchers feeling they are working at cross-purposes. This presentation will describe the work of the multi-disciplinary, multi-institutional Leadership in Ethical and Equitable Design (LEED) of Science and Engineering Working Group, which aims to clarify, review, and revitalize the roles and value of engaging bioethicists and scholars in the social sciences, humanities and the arts in STEM research. We will discuss barriers and challenges to equitable, productive integration of ELSI expertise and the need for guidelines to establish the grounds and support for revitalizing and extending future collaborations in a productive manner.