Autism and the National Children’s Study
October 4, 2007 by Kristina Chew, PhD
Filed under Health
Autism is one of the “increasingly prevalent” diseases that will be studied in the planned National Children’s Study, the largest ever study of children’s health in the US to be undertaken. The study will be conducted at 105 research centers primarily located at major research universities around the country. Researchers hope to enroll 100,000 children from before birth to age 21, and to start enrolling pregnant women in the upcoming year. Locations for the centers were chosen by using
…. a probability-based method to ensure that children and families across the nation—from diverse ethnic, racial, economic, religious, geographic, and social groups—are fairly represented in the Study. Criteria for location selection included demographics, number of births, and number of babies born with low birth weights.
Says Dr. Duane Alexander, director of the National Institute of Child Health and Human Development, as quoted in today’s New York Times,
“The National Children’s study is the largest and longest research study ever to look at the ways in which environment and genetics interact to influence child health and human development,”……..
“It will look at how behavioral and social factors also interact with genetics and the physical environment.”
Autism is referred to as among the “nation’s most pressing health problems,” along with “birth defects, diabetes, asthma, obesity, learning disabilities, and behavioral disorders.” The National Institute of Child Health & Human Development (NICHD) notes that it is hoped that findings might “prevent and treat” the above-mentioned “health problems.” The study will take 25 years to complete—-by which time, it occurs to me, Charlie will be almost as old as me.
Kristina, I am wary of this study. They contacted me shortly after my daughter was born, and initially I was all for being helpful. Answered nearly an hour’s worth of questions over the phone. Then they wanted personal data — her SSN, physician info, and other identifying info — and I said no. I understand their desire to verify the info parents give, but no, they may not have my child’s personal info.
After that I got seven phone calls from them, increasingly aggressive and even bullying, trying to “close the deal”. I’ve worked in IT and in academic science; I know how valuable large longitudinal data sets are, and how easily data security can be breached, and I explained all this to three or four of the reps. This got me more bullying about how I was undermining a very important study, and a fair amount of complete bullshit about how they’d manage the data. They cut me off consistently while I was answering them. One of the seven was calm and reasonable; the rest sounded more like they had backgrounds in collections.
I am also fairly sure some of the phone reps lied about who they were, their backgrounds, and their qualifications. I don’t know what kind of commission or quota system their call companies are working on, but whatever it is, they’ve got the heat turned up much too high. I am wary about both the tactics and the quality of the data.
Thanks for sharing this, Amy—do you know why they got in touch with you in the first place?
They said on the news that because it’s gov’t funded, the funding would depend upon how much $$ each administration allocates for it. Well, doesn’t this mean they might not be able to do a thorough job for the 21 year stretch? (shaking my head here)
25 years!!!!!
I know the system is slow.. but…….
Liz, this is always the case for govt-funded research programs. It’s not as bad as it sounds, because the longer the study goes, the more partisans it will have, and there’ll be plenty of interest in the data sets. Also it doesn’t involve building robotic rovers and putting people into space.
Kristina, I’m very sorry, I confused this with the National Immunization Study, which is ongoing but nowhere near as comprehensive as the NCS. For NIS they generate phone numbers randomly, then contact in hopes that there are children in the household. I would hope that the NCS callers are more reasonable, but frankly I would still be worried about anonymity. There are too many examples of research subjects being used without permission, and I think the institutional pressures to keep following the subjects quietly, and perhaps to experiment with them, after the study was officially over would be serious.
I am not too keen on how NIH uses the public for research anyway. Around here we’re involuntary participants in a large multi-center post-trauma study, so if you’re in a bad accident you are going to be enrolled and experimented upon, conscious or not. I actually ended up doing some research on the study’s genesis — it came in handy for another project — and found that the benefits of participation were being oversold considerably, and the risks minimized, perhaps seriously. So no, I’m not too sanguine about how the federal research offices treat subjects.