ELSIcon2022 Paper: Shining a light on overlooked questions in ELSI genomics

ELSIcon2022 • Paper • May 27, 2022

Ainsley Newson

The rapid mainstreaming of clinical genomics and an ever-expanding global genomics research agenda have given rise to a large body of scholarship addressing its ethical, legal and social implications. This has been highly effective at promoting important conversations among publics, patients, professionals and policy-makers. However, for the most part, this scholarship has left several important questions unanswered. This presentation takes some initial steps towards articulating what those questions might be, and how we should go about answering them. A key premise for the presentation is that much (but, of course, not all) existing ELSI scholarship in genomics is unjustifiably focused on both the clinical paradigm (and thus clinical ethics-informed analyses) and on issues as they are experienced by individuals. For example, questions such as how big a reproductive carrier screening panel should be, or whether a person should have access to their raw sequencing data, or how the value of a gnomic test ought to be defined, have all tended to be addressed in narrow ways, focusing on individual autonomy and similar concepts. This status quo risks overlooking important considerations, ones that arise from our interrelatedness: with each other and with the social and political systems in which we live. It will be argued that such collective and systems-level issues, questions and concepts must also be accounted for in order to achieve a deep ELSI analysis in genomic health.