The debate over whether — and if so, which, when, and how — results and incidental findings from gene-finding and other genomic research should be provided to individual subjects has been a long-standing focus of attention for ELSI researchers. Importantly, the question itself exemplifies the blurring of research and practice in two ways. First, the very expectation that any data arising from a research project will have meaning and value for individual research subjects arises from the belief that the research will have direct and immediate clinical significance. Second, the failure to distinguish between “research results” and “incidental findings” — a blurring that, although not ubiquitous, is far from uncommon — compounds the problem.
