Research ethics and the challenge of whole-genome sequencing

• Published in: Nature reviews. Genetics Vol. 9; no. 2; pp. 152 - 156
• Main Authors: McGuire, Amy L., Caulfield, Timothy, Cho, Mildred K.
• Format: Journal Article
• Language: English
• Published: London Nature Publishing Group UK 01.02.2008; Nature Publishing Group
• Subjects: Agriculture; Animal Genetics and Genomics; Biological and medical sciences; Biomedical and Life Sciences; Biomedicine; Cancer Research; Clinical significance; Disclosure; DNA sequencing; Ethics, Research; Family; Fundamental and applied biological sciences. Psychology; Gene Function; Genes. Genome; Genetic research; Genome, Human; Genomes; Genomics; Health Planning Guidelines; Human Genetics; Humans; Methods; Molecular and cellular biology; Molecular genetics; Molecular Sequence Data; Nucleotide sequencing; Public Policy; Publishing - ethics; Publishing - legislation & jurisprudence; Research - legislation & jurisprudence; Research ethics; Research Subjects - legislation & jurisprudence; science-and-society; Sequence Analysis, DNA - ethics; Third-Party Consent - legislation & jurisprudence; United States; Human; Ethics; Genome; Sequencing; Individual
• ISSN: 1471-0056; 1471-0064; 1471-0064
• DOI: 10.1038/nrg2302

As personal genome research advances, investigators and international research bodies must ensure ethical research conduct. The authors discuss three major ethical implications of personal genomics that relate to the participants, their next-of-kin and the data. 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.