Scrapping plans for health study hurts children

The president's budget proposal contained a nasty surprise for American parents, pediatricians and children's advocates recently: It scrubbed plans for the most unique long-term, cause-and-effect study of children's health ever proposed.

The National Children's Study was ambitious, to be sure. And costly, too. It was also, advocates state passionately, terribly overdue. And now they're scrambling to keep that dream alive.

In 2000, Congress created the study and more than $50 million has been spent since that time planning it and naming study sites, including the University of Utah and Salt Lake, which are supposed to be a "vanguard" site and one of the earliest to kick off enrollment.

The plan is to get pregnant women enrolled in the study so their pregnancies can be tracked. When the babies are born, they'll be tested and followed and data collected for at least the duration of their childhood and teen years.

Ever wonder about nature vs. nurture? For the first time, says Dr. Edward B. Clark of Primary Children's Medical Center and the local principal investigator, the answer to that question might be tantalizingly close. The study was designed to track not only genetic and health issues, but the environmental factors that might influence them.

No one seems willing to say out loud that the president's budget sold out the relatively powerless, nonvoting kid population in favor of a study with an entirely different focus proposed by the agency that headed up human genome research. But there is no question that in place of the children's study, a long-term study focusing primarily on adult health issues has been proposed in the president's budget, to be conducted by the human genome crew, with a this-year price tag that very nearly mirrors what was not allocated for the children's study.

No one's challenging the need for more genetic research into diseases like Alzheimer's, Parkinson's, diabetes and heart disease, which will be part of the proposed study. But issues that begin in childhood impact how healthy adults are. We are the accumulation of our experiences, exposures, health habits and challenges and a lot more. It's not like adults wouldn't benefit from learning about children's health. Or like adults don't have a vested and heartfelt interest in children, either.

But the proposed swap, however you couch it, just continues a trend that historically has guided children's medical research in America: Do as little as possible. Don't worry about it.