One of the key ideas behind sequencing the human genome wasthe promise of "personalized medicine." The idea was that geneticinformation could be used to make health care more precise,efficacious, and safe. The Human Genome Project showed us thatamong humans, DNA sequences are 99.9 percent similar, but theremaining 0.1 percent, in the context of environmental and epigeneticfactors, produces the entirety of genetic variability withinthe human population. How can we use the information about humangenetic variation to achieve these stated goals of the genome-sequencingeffort?1 Investigators are currently collecting phenotypic informationabout patients (their . . . [Full Text of this Article]
The Effects on Clinical Genomic Research of Large Populations That Have Been Phenotyped
Cause for Concern: No Perfect Anonymity
The Risks of Sharing Data
Varying Levels of Concern
A Potential Solution and a Proposal
Source Information
From the Department of Pediatrics, Children's Hospital and Harvard Medical School, Boston (I.S.K.); and the Department of Genetics, Stanford University, Stanford, Calif. (R.B.A.).
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