The National Children’s Study


Why should the National Children’s Study matter to you? Most of you probably haven’t even heard of it. It is the most ambitious study of children’s development ever attempted in the United States. The study has stumbled, but it just might succeed. I’m talking about the National Children’s Study, a prospective study of 100,000 children, following them from birth until they are 21. Researchers want to figure out the influence of genetics and the environment on children. This is a public health study, which explores big picture questions about things that influence health, the kind of questions that don’t necessarily come up in your typical doctor-patient encounter.

This mega study overshadows anything that has been previously attempted. It is also an example of how difficult it is to develop a study of this scale. The size of the population, the cost of the study, and the amount of data to be collected are phenomenally large.

In 2002, Congress authorized the study for the purposes of assessing the range of factors that affect children’s health, growth, and development.[1] Recruitment of the 100,000 children would be voluntary, with safeguards to protect confidentiality. Researchers would observe the children in their home environment, and take samples things like tap water and vacuum cleaner bags. They would also collect samples of urine, blood, and saliva, and measure height and weight.

The study was to be coordinated with similar studies in other countries such as Japan, France, Britain, and Canada. Some of their research has been underway for over a decade. Denmark and Norway have followed children since birth for 16 years, and have already published scores of studies.[2] But the National Children’s Study has run into problems,[3] and is lagging far behind. David Savitz, an epidemiologist who worked on the project in the beginning, says, “We’ve missed the boat.”[4] Fortunately, it’s been revised, and is getting back on track.

Here’s why the study should matter to you. When it comes to healthcare, it may be tempting to focus only on our own family and children, prioritizing our autonomy at the expense of others. Some are skeptical of any program run by the government. But, large-scale, public health studies may be what it takes to find answers to serious childhood health issues such as birth defects or autism. Attention to public health is a way to demonstrate genuine care for others.

Here’s another reason why the National Children’s Study is important. It addresses a neglected area of research: the prenatal and early childhood periods. This research might help us reduce childhood asthma, obesity, diabetes, and heart disease. That could help not only our own children, but many others. Ultimately, it could benefit people of all ages, all around the world. 

Even though at first they didn’t succeed, I’m glad the researchers are willing to try, try again.

[1] Alan E. Guttmacher, Steven Hirschfeld, and Francis Collins, “The National Children’s Study—A Proposed Plan,” New England Journal of Medicine 369, no. 20 (2013):1873-1875.

[2] Jocelyn Kaiser, “The Children’s Study: Unmet Promises,” Science 339 (2013): 133-136.   Available at

[3] See, e.g., Sally Kalson, “Children’s Study Closes Site Here after Rethinking,” Pittsburgh Post-Gazette, January 31, 2013. Meredith Waldman, “Child-Study Turmoil Leaves Bitter Taste,” Nature, May 16, 2012.

[4] Kaiser,136.




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