In the spring of 2009, researchers started showing up in the neighborhoods of Montgomery County, Pennsylvania, clipboards in hand, to enroll expecting mothers and their unborn children in a huge environmental and health study that was going to last for decades. They asked probing questions whenever a woman answered the doorbell: Was she between the ages of 18 to 49? Was she pregnant, and if yes, how far along? If she wasn’t, could the researchers stay in touch with her until she knew she was having a baby?
The National Children’s Study (NCS), as it was called, had set out to enroll and follow 100,000 children from conception until the age of 21 in an effort to unlock some of our most enduring medical mysteries — from the prevalence of asthma and attention-deficit disorder to the rise of autism. Montgomery County, a bedroom community northwest of Philadelphia, was one of its test sites, and the women targeted for recruitment came from painstakingly selected households. They would answer dozens of questions about their own health, family medical histories, jobs, and personal habits. They would provide clippings of their hair and fingernails, and dust from their houses. When they went into labor, hospital staff would be on hand to sample cord blood, placenta, the infant’s first bowel movement, and other biological specimens — each a window into the prenatal chemical milieu.
Scientists, of course, knew that developing babies and young children are exquisitely sensitive to their environments. They just needed more data, more evidence, to connect early exposures to diseases and disorders later in life — and that’s precisely what the NCS, administered under the auspices of the National Institutes of Health, was going to provide: an unprecedented epidemiological portrait of the typical American home.
“We were tapping into a data goldmine,” said Jennifer Culhane, an epidemiologist at Children’s Hospital of Philadelphia who was directing the study’s local efforts. “There was a sense that we were engaging in something special, and doing more to advance the science of pediatric disease than anyone else in the world.”
Those aspirations came to naught when the NCS was canceled in December 2014, after a 14-year history during which it burned through $1.3 billion in taxpayer dollars without generating much in the way of useful information. The study’s collapse barely registered with the national media, and unlike other major taxpayer-funded failures that have become political bludgeons on Capitol Hill, reaction in Washington has been muted. But the study’s collapse left a bitter legacy of anger and frustration among those who worked on the NCS for years, only to see their efforts wasted on a bungled enterprise that critics say went nowhere and accomplished nothing. Sources interviewed for this story gave a range of reasons for the study’s demise: deep scientific divisions over how it should have been carried out, partisan bickering, and even charges of deliberate dissembling over just how much such study would ultimately cost, to name just a few.
“There is no single factor that led to the failure of the NCS to achieve its goals, but rather a persistent set of challenges facing the design, management, and costs of the study,” said Francis Collins, director of the NIH, in an email message defending his decision to terminate the program.
Still, many critics say those challenges were a result of dysfunctional management, an ever-shifting set of objectives, and even lack of support at the highest levels of the National Institutes of Health.
“Too many people loaded this study with their own desires and wishes for what they wanted it to be without thinking enough about what it could actually achieve,” said Ellen Silbergeld, a former member of an NCS federal advisory committee and a professor of environmental science, epidemiology, and health policy at Johns Hopkins University School of Public Health, in Baltimore, Maryland.
Many of the scientists who worked on the National Children’s Study have since moved on. But virtually all of the participants interviewed suggested that the American public lost a groundbreaking opportunity to answer questions about pediatric disease. Those questions remain as vexing now as when the study was launched nearly two decades ago — and Silbergeld was among many sources interviewed who lamented all the lost time and wasted money.
“This was a scientific humiliation for the United States,” she said.
by Charles Schmidt, Undark | Read more:
Image: uncredited
The National Children’s Study (NCS), as it was called, had set out to enroll and follow 100,000 children from conception until the age of 21 in an effort to unlock some of our most enduring medical mysteries — from the prevalence of asthma and attention-deficit disorder to the rise of autism. Montgomery County, a bedroom community northwest of Philadelphia, was one of its test sites, and the women targeted for recruitment came from painstakingly selected households. They would answer dozens of questions about their own health, family medical histories, jobs, and personal habits. They would provide clippings of their hair and fingernails, and dust from their houses. When they went into labor, hospital staff would be on hand to sample cord blood, placenta, the infant’s first bowel movement, and other biological specimens — each a window into the prenatal chemical milieu.Scientists, of course, knew that developing babies and young children are exquisitely sensitive to their environments. They just needed more data, more evidence, to connect early exposures to diseases and disorders later in life — and that’s precisely what the NCS, administered under the auspices of the National Institutes of Health, was going to provide: an unprecedented epidemiological portrait of the typical American home.
“We were tapping into a data goldmine,” said Jennifer Culhane, an epidemiologist at Children’s Hospital of Philadelphia who was directing the study’s local efforts. “There was a sense that we were engaging in something special, and doing more to advance the science of pediatric disease than anyone else in the world.”
Those aspirations came to naught when the NCS was canceled in December 2014, after a 14-year history during which it burned through $1.3 billion in taxpayer dollars without generating much in the way of useful information. The study’s collapse barely registered with the national media, and unlike other major taxpayer-funded failures that have become political bludgeons on Capitol Hill, reaction in Washington has been muted. But the study’s collapse left a bitter legacy of anger and frustration among those who worked on the NCS for years, only to see their efforts wasted on a bungled enterprise that critics say went nowhere and accomplished nothing. Sources interviewed for this story gave a range of reasons for the study’s demise: deep scientific divisions over how it should have been carried out, partisan bickering, and even charges of deliberate dissembling over just how much such study would ultimately cost, to name just a few.
“There is no single factor that led to the failure of the NCS to achieve its goals, but rather a persistent set of challenges facing the design, management, and costs of the study,” said Francis Collins, director of the NIH, in an email message defending his decision to terminate the program.
Still, many critics say those challenges were a result of dysfunctional management, an ever-shifting set of objectives, and even lack of support at the highest levels of the National Institutes of Health.
“Too many people loaded this study with their own desires and wishes for what they wanted it to be without thinking enough about what it could actually achieve,” said Ellen Silbergeld, a former member of an NCS federal advisory committee and a professor of environmental science, epidemiology, and health policy at Johns Hopkins University School of Public Health, in Baltimore, Maryland.
Many of the scientists who worked on the National Children’s Study have since moved on. But virtually all of the participants interviewed suggested that the American public lost a groundbreaking opportunity to answer questions about pediatric disease. Those questions remain as vexing now as when the study was launched nearly two decades ago — and Silbergeld was among many sources interviewed who lamented all the lost time and wasted money.
“This was a scientific humiliation for the United States,” she said.
by Charles Schmidt, Undark | Read more:
Image: uncredited
