Weekend Economists Silent Night Christmas Eve 2014

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35. How the U.S. Government Botched Its Multibillion-Dollar Plan to Beat Childhood Disease

http://www.businessweek.com/articles/2014-12-23/how-the-national-childrens-study-fell-apart

In the late 1990s, scientists studying children's health pondered crucial questions they couldn’t answer: Conditions as diverse as asthma and autism were increasing in prevalence, with no clear reason why. Many suspected that a child’s early environment—even exposures in the womb—were connected to medical problems that manifested years later. For example, is risk of asthma influenced by the stress a mother experiences during pregnancy? What role does air pollution play? What about diet? Those links proved difficult to study because by the time a child shows signs of asthma, it's too late to take a blood sample during pregnancy, or analyze the air the newborn breathed.

To address those challenges, leading pediatric researchers in the U.S. envisioned an ambitious study. They wanted to track 100,000 American children from before birth until the age of 21 by collecting detailed data, biological specimens such as blood and urine, and environmental samples, including dust from childhood homes. In 2000, Congress authorized the National Institutes of Health (NIH) to go ahead with the project, which would be called the National Children's Study.

In the 14 subsequent years, the government has spent $1.3 billion, working with hundreds of scientists at dozens of sites around the country. There's little to show for the effort. While some 5,700 children have been enrolled in pilot studies since 2009, researchers stopped collecting data on Dec. 12, when the NIH concluded that the project could not be salvaged and moved to shut it down. Families that had signed up received letters saying their contributions would no longer be needed.

"The goals of the study were laudable and they remain laudable," Francis Collins, NIH director, says. "Most of us believe it should now be possible to accomplish those goals at a substantially lower cost and higher efficiency."