title: Evolving approaches to the ethical management of genomic data.
abstract: The ethical landscape in the field of genomics is rapidly shifting. Plummeting sequencing costs, along with ongoing advances in bioinformatics, now make it possible to generate an enormous volume of genomic data about vast numbers of people. The informational richness, complexity, and frequently uncertain meaning of these data, coupled with evolving norms surrounding the sharing of data and samples and persistent privacy concerns, have generated a range of approaches to the ethical management of genomic information. As calls increase for the expanded use of broad or even open consent, and as controversy grows about how best to handle incidental genomic findings, these approaches, informed by normative analysis and empirical data, will continue to evolve alongside the science.
authors: Ethical, Legal, and Social Implications Program, Division of Genomics and Society, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892-9305, USA. jm522n@nih.gov
authors: Jean E
authors: JE
authors: McEwen
authors: Joy T
authors: JT
authors: Boyer
authors: Kathie Y
authors: KY
authors: Sun
mesh_terms: D023281:Genomics / Q000941:ethics*; D063025:Health Information Management / Q000941:ethics* / Q000639:trends; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D018907:Privacy