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Research ethics and the challenge of whole-genome sequencing

Abstract

The recent completion of the first two individual whole-genome sequences is a research milestone. As personal genome research advances, investigators and international research bodies must ensure ethical research conduct. We identify three major ethical considerations that have been implicated in whole-genome research: the return of research results to participants; the obligations, if any, that are owed to participants' relatives; and the future use of samples and data taken for whole-genome sequencing. Although the issues are not new, we discuss their implications for personal genomics and provide recommendations for appropriate management in the context of research involving individual whole-genome sequencing.

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Acknowledgements

Research is supported by the Greenwall Foundation Faculty Scholars Program, The Gillson Logenbaugh Foundation and The ARCO Foundation Young Teacher–Investigator Award, Genome Alberta, the Ethical, Legal, and Social Implications (ELSI) Research Program, Genome Canada, Alberta Heritage Foundation for Medical Research, National Human Genome Research Institute (NHGRI-ELSI) and US National Insitutes of Health grants R01HG004333 and 5P50HG003389. Thanks to A. Adair.

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Correspondence to Timothy Caulfield.

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McGuire, A., Caulfield, T. & Cho, M. Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet 9, 152–156 (2008). https://doi.org/10.1038/nrg2302

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