A Just Genomics Needs an ELSI of Translation. Hastings Cent Rep 2024 Dec;54 Suppl 2:S126-S135
Date
12/22/2024Pubmed ID
39707956DOI
10.1002/hast.4938Scopus ID
2-s2.0-85212709285 (requires institutional sign-in at Scopus site) 5 CitationsAbstract
The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit ELSI of translation-normative and pragmatic scholarship that embraces the interconnectedness of research and clinical care and centers the obligations of researchers, institutions, and funders to mitigate inequities throughout the translational pipeline. We propose core principles to guide an ELSI of translation and to ensure that this work balances the value of the generalizable knowledge that genomics research generates and the value of the individuals and communities who make this research possible.
Author List
Halley MC, Olson NW, Ashley EA, Goldenberg AJ, Tabor HKAuthor
Meghan C. Halley PhD, BA, MPH Assistant Professor in the Institute for Health and Humanity department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
GenomicsHumans
Social Justice
