Research ethics and the challenge of whole-genome sequencing.
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.
McGuire
Amy L
AL
Amy L. McGuire is at the Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA.
Caulfield
Timothy
T
Cho
Mildred K
MK
D032984:Ethics, Research; D005190:Family; D015894:Genome, Human; D006287:Health Planning Guidelines; D006801:Humans; D008969:Molecular Sequence Data; D011640:Public Policy; D011643:Publishing / Q000941:ethics / Q000331:legislation & jurisprudence; D012106:Research / Q000331:legislation & jurisprudence; D035842:Research Subjects / Q000331:legislation & jurisprudence; D017422:Sequence Analysis, DNA / Q000941:ethics*; D020458:Third-Party Consent / Q000331:legislation & jurisprudence