Last month, we wrote about the precarious position of the National Children’s Study (NCS), an initiative to track the health of children from birth to adulthood to identify the best ways to prevent childhood disorders.
Despite an investment of 10 years and $1.3 billion, it was canceled last week by the National Institutes of Health (NIH) because of mismanagement, cost and outdated research methods, as reported by KaiserHealthNews.org (KHN).
“Researchers and children's health advocates,” according to KHN, “now fear that while funding for smaller projects will continue in 2015 with an already appropriated $165 million, NIH may use that money for research not related to children's health.”
When Congress passed the Children’s Health Act in 2000, the ambitious study was commissioned to follow 100,000 newborns until they turned 21 to examine how environmental and biological influences affected their health. But as Dr. Francis Collins, the director of the NIH, announced with the study’s demise, “"Based on the working group's findings and internal deliberation, I am accepting ... findings that the NCS is not feasible. I am disappointed that this study failed to achieve its goals. Yet I am optimistic that other approaches will provide answers to these important research questions."
Several prestigious agencies, including the Institute of Medicine and the National Academy of Sciences, had weighed in over the last few months to a “working group” the NIH assembled to assess the program’s viability, and they hadn’t been optimistic.
An NIH official indicated that the agency will make lemonade out of the NCS lemon by refining best practices on data collection and study recruitment, and applying that knowledge to examine the links between environmental factors and child health and development in smaller studies starting next year.
But the study’s cancellation disappointed a lot of people, including Dean Baker, director of the Center for Occupational and Environmental Health at the University of California Irvine. He told KHN the NIH might just use the $165 million for other research and still claim it’s doing what is required by the Children's Health Act.
Nigel Paneth, a professor of epidemiology and pediatrics at the University of Michigan, helped design the study starting in 2000. He supports its cancellation, but told KHN that he disagrees with how the NIH dismantled the work at the original 40 pilot sites, and he says communications announcing the decision were bungled, noting that researchers put a large effort into engaging these communities.
"They [NIH] had no concept that they were real people out there," he told KHN. As the research was slowing down, researchers were expected to turn over individuals' information to other researchers without consulting the participants. "It was mismanaged, from the conceptual idea to actualization in the field."
How many times has that happened, when a public agency makes a rational decision, then forgets that there are consequences for the people who were invested in the process?