Incidental Findings in Genomic Research: A Review of International Norms

Ma’n H. Zawati, Brian Van Ness & Bartha M. Knoppers, “Incidental Findings in Genomic Research: A Review of International Norms” (2011) 9 GenEdit 1 (Translated in French as well), 1-8.

Human genomic research will influence the practice of medicine by further exploring the vast potential of large-scale biobanks and associated pharmacogenomics and clinical research initiatives. While population studies of normal genomic variation may assist in understanding heterogeneity and allow for targeted therapies, researchers may well discover incidental findings – discoveries that go beyond the aims of the intended study – especially when using whole genome sequencing technologies. Policies as well as literature have dealt with the issue of managing these findings in research in general, but a review of international norms governing genomic research will give us a more comprehensive look at the state of the legal and ethical guidance.

This content has been updated on December 16, 2015 at 15 h 38 min.