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How will patients, families and doctors handle the coming flood of personalized genetic data?
Date:12/6/2011

Sequencing the entire human genome took more than a decade before leaders of the Human Genome Project announced their completion of a rough draft in a 2000 White House ceremony. Finished in 2003, sequencing that first genome cost nearly $3 billion. Today, with advances in technology, an individual's whole genome can be sequenced in a few months for about $4,000.

But knowing just what to do with this knowledge has not kept pace with the gusher of genetic data. People can now have their own genome analyzedall 3 billion pairs of DNA letters per personoffering clues to their current and future risks of genetic diseases. But what will individuals do with this flood of information? Is some of it information that they prefer not to know? How will knowledge of a child's possible future risks affect the parents' decisions now?

These are just a few of the near-future issues being explored in a new four-year grant from the National Human Genome Research Institute (NHGRI), the federal agency that sponsored the Human Genome Project. The Children's Hospital of Philadelphia is one of five U.S. centers, and the only one focusing on pediatrics, to receive a new four-year Clinical Sequencing Exploratory Research Project award. Children's Hospital will receive $2.2 million per year for four years.

The NHGHI announced the grant today as part of an intensified focus on the medical applications of its flagship Genome Sequencing Program.

The grant recipients are forming a consortium to define social and ethical issues associated with clinical sequencing, and to propose guidelines on sharing, interpreting and using this genetic information. Much of the consortium's work will focus on guiding physicians and genetic counselors in interpreting data for families and patients.

"Currently, when gene analysis helps us arrive at a diagnosis of a child's disorder, we can then counsel a family, providing information about what to expect and what o
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Contact: John Ascenzi
Ascenzi@email.chop.edu
267-426-6055
Children's Hospital of Philadelphia
Source:Eurekalert

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