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Your Genetic Secrets May Not Be as Safe as You Think
Date:1/18/2013

p>With the Human Genome Project, it was decided to put all information "into the public domain within 24 hours of it being produced," she explained. "So it wasn't then only a benefit to those trying to complete mapping the genome and the production of the sequence itself, but also to begin using it to understand biology, which can then improve health; to look at what genes might be contributing to disease."

Rodriguez and Erlich emphasized both the importance of sharing public data and the need for full disclosure to research participants.

"We want to be open and transparent with the participants. We want to tell them the benefits -- and I'm not diminishing the benefits," Erlich said. "We want to tell them the risks. And we are very open and clear about the risks: You might be identified. It's about autonomy. It's about empowering these people who take this and form their decision."

Rodriguez said the study highlights the need to stay on top of privacy issues.

"There are privacy protections in place for participants and we just need to make sure that those remain up to date with the technology and methods and information available to the public, so that they remain as robust as we want them to be and the public wants them to be," she said.

More information

The U.S. National Human Genome Research Institute has more about genetic testing.

SOURCES: Yaniv Erlich, Ph.D., Andria and Paul Heafy Fellow, Whitehead Institute for Biomedical Research, Cambridge, Mass.; Laura Lyman Rodriguez, Ph.D., director, Office of Policy, Communications and Education, and acting chief, Genomic Healthcare Branch, National Human Genome Research Institute, U.S. National Institutes of Health; Jan. 18, 2013, Science


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