ELSI Research and Genetics: A Co-Evolution

Abstract

In April 2011, the Center for Genomics and Society at the University of North Carolina-Chapel Hill hosted a conference entitled “Exploring the ELSI Universe.”1 Although “ELSI,” the acronym for “ethical, legal, and social implications” used primarily in the US, does not spell out the source of these implications, such specification is now unnecessary. ELSI has taken on a life of its own that can be understood in terms of its origins in the Human Genome Project twenty-one years ago, as well as its generalization to any biologically-related science or technology. ELSI has inspired similar research programs, including GE3LS (Genomics-Related Ethical, Environmental, Economic, Legal and Social Research) in Canada and ELSA (Ethical, Legal and Social Aspects of the Life Sciences and Technology) in the EU. The organizers of this conference redefined the acronym in ways that reflect the evolution of the concept: Expanding, Linking, Specializing, and Internationalizing. Expanding—how has ELSI research expanded? Linking—how does ELSI relate to other areas of science and technology? Specializing—which areas of ELSI research would benefit from a deeper focus? Internationalizing—how should ELSI address global and local issues? This issue of AJOB Primary Research reports some of the work presented at this conference and reflects the maturation of ELSI as a field as well as the maturation of genetic research. Trinidad and colleagues (2012) and Brothers and Clayton (2012) both study the time-honored issue of informed consent for genomic research. However, these studies represent a shift from ELSI research operating independently from the scientific or clinical context and toward a concurrent and coordinated approach in which ELSI research is more proactively targeted at answering specific policy questions raised by research projects or their clinical applications. This approach requires close collaboration with scientific researchers for logistical coordination and to assure that the ELSI studies are relevant and conceptually on target. These studies, the results of which were both obtained from