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September 4, 2013

NIH Funds Program to Give Newborns a Big Data Birthday Present

Isaac Lopez

A popular tradition in Finland going back to the 1930’s is to give the mothers of newborn babies a cardboard box with a thin mattress at the bottom, along with an assortment of baby paraphernalia. It’s a nice little care kit that the country attributes its very low infant mortality rate. In the United States, however, the question is being asked “what if the newborn kit included genome sequencing.”

Can sequencing of a newborn’s genomes provide useful medical information beyond what current newborn screenings already provide? This is the question that the National Institute of Health (NIH) is seeking to answer through a $25 million dollar pilot program it’s launching called the Genomic Sequencing and Newborn Screening Disorders research program.

Funded through the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the National Human Genome Research Institute (NHGRI), the program has already begun at the tune of $5 million in 2013 dispersed among four institutions. Included among the grantees are the following organizations:

  • Brigham and Women’s Hospital, Boston
  • Children’s Mercy Hospital, Kansas City, MO
  • University of California, San Francisco
  • University of North Carolina at Chapel Hill

The NIH says that the program will be funded to total $25 million over the next five years as funds are made available.

Currently, more than 4 million infants born in the United States receive a standard screening, with DNA testing happening only to confirm a diagnosis of certain disorders such as cystic fibrosis. The NIH’s study will explore whether using DNA analysis as part of the first-line screening can improve newborn health care across the board.

The NIH says that as they examine this question, the awards will consist of three specific parts, including genomic (and exome) sequencing and analysis; research related to patient care; and the ethical, legal and social implications of using genomic information in the newborn period.

Related items:

NIH Director Pledges Openness for BD4K Initiative 

Doctors Look to Medical Informatics for Novel Cures 

The Power and Promise of Data Driven Medicine 

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