title: What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
abstract: Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty--that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted "in the public square."
authors.affiliation: Department of Social Medicine, School of Medicine, Center for Genomics and Society, University of North Carolina-Chapel Hill, Chapel Hill, NC, USA.
authors.forename: Gail E
authors.initials: GE
authors.lastname: Henderson
authors.forename: Eric T
authors.initials: ET
authors.lastname: Juengst
authors.forename: Nancy M P
authors.initials: NM
authors.lastname: King
authors.forename: Kristine
authors.initials: K
authors.lastname: Kuczynski
authors.forename: Marsha
authors.initials: M
authors.lastname: Michie
mesh_terms: D018070:Biological Specimen Banks / Q000941:ethics; D030881:Disclosure / Q000941:ethics; D032984:Ethics, Research; D036281:Genetic Research / Q000941:ethics* / Q000331:legislation & jurisprudence; D023281:Genomics / Q000941:ethics*; D006801:Humans; D033162:Incidental Findings; D007258:Informed Consent / Q000941:ethics; D017008:Negotiating; D012941:Social Responsibility; D057170:Translational Research, Biomedical / Q000941:ethics / Q000331:legislation & jurisprudence; D035501:Uncertainty