Personal genome research : what should the participant be told?
Should the results of whole genome sequencing research be disclosed to participants, in particular when the results have uncertain or indeterminate phenotypic consequences? This controversial question is considered in light of one author's (J.L.) experience as a geneticist who recently had his own genome sequenced.
McGuire
Amy L
AL
Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, BCM420 Houston, Texas 77030, USA. amcguire@bcm.edu
Lupski
James R
JR
D003627:Data Interpretation, Statistical; D014644:Genetic Variation; D015894:Genome, Human; D006801:Humans; D017422:Sequence Analysis, DNA / Q000191:economics / Q000941:ethics*; D014342:Truth Disclosure / Q000941:ethics*
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