A Vision for Empirical ELSI along the R&D Pipeline.

The field of examining the ethical, legal, and social implications (ELSI) of genetics and genomics in the United States has evolved over the past 30 years. Initially focused on normative and conceptual studies, ELSI research has become more investigational and observational, incorporating social science methods. Engaging the perspectives and voices of those impacted by these technologies, including patients and practitioner communities, is important for enhancing public trust in science and addressing health equity gaps. However, current models for ELSI research and governance are often retrospective and occur too late in the research process to meaningfully inform technology design and implementation. There have been efforts to expand early-stage studies led by technologists and incorporate stakeholder engagement, but more needs to be done to ensure the active involvement of publics in the research process. Initiating empirical ELSI research upstream in the R&D pipeline for emerging technologies could generate significant benefits, including the design of technologies that align with social and ethical considerations and public values. This approach could also enhance the desirability, acceptability, and accessibility of research processes and products within communities. Empirical ELSI should be expanded beyond genomics to other emerging technologies, such as artificial intelligence, and be more formally incorporated into the research innovation ecosystem. This would require cultural shifts in how science is done, increased support for ELSI researchers, and the prioritization of public deliberation and participation. By incorporating upstream empirical ELSI, we can advance responsible innovation and address ethical [Extracted from the article]