A significant part of ELSI research has always been looking beyond the challenges that genomic technology can raise for scientists and clinicians to the larger questions it raises for the public. During the tool-building era of the Human Genome Project itself, most ELSI research looked ahead to anticipate the effects that increased genomic information would have on society at large, through studies of its implications for insurance, employment, privacy, and the justice system, as well as its potential impact on cultural notions of personal and group identity, and concepts of normality and health. While these studies set the stage for important policy developments like the Genetic Information Non-Discrimination Act, they were also criticized by some for looking too far downstream from genomics, as if the design and conduct of genome research itself required no discussion by societal stakeholders beyond the scientific community. Indeed, the “Genomes to Society” portion of the ELSI research agenda is sometimes still portrayed as operating at a distance from genome research itself, as referring to “broader” or “downstream” considerations “beyond” the lab or clinic, with the lowered urgency that distance connotes.
