Would You Let Your Child Participate in a Medical Research Study?

The suitability of common medicine and treatment methods for use in children has become more and more questionable in recent years. Questions arose as to whether drugs and treatments formulated for adults are safe to use for children as well. And what dosage can be considered safe for a child? Consequently, scientists and pharmaceutical companies have greatly increased their research efforts to include children in their medical research. Still, although 20% of the U.S. population is made up of children, only 5% of the National Institute of Health's research funding is allocated for pediatric disease research. Much research involving children will have to be done. But unlike adults, children cannot make an informed decision as to their participation in this research. The parents or legal guardians have to make that decision for them. This begs the question for many: Would you let your child be a medical 'guinea pig' if the opportunity arose?

Recently my first grader came home with a note from researchers at the University of Kentucky (UK). It was an invitation for my child to participate in one of their research studies, which apparently involves the research into how children think and learn. And I'm sure each child in at least my daughter's grade level at the same school got the same letter. Although she is a very good student I doubt she was singled out because of her intellect. And there was the offer for compensation. Wouldn't this be an easy and convenient way to add funds to my child's college fund? Especially, when money is tight in the current economy? Maybe there was even use for her siblings in the study? It sounded like fun. Who wouldn't want to take advantage of such an opportunity and help science along in the process? And it was just a harmless and generic study, right?

You wonder why I thought long and hard about this? You wonder why decided not to have her participate in this study? Well, fortunately the note included a little bit more detail about this study, which is supposed to be done in several sessions. From the looks of it, several MRIs are involved to check brain function. While one might be nice, just to see whether there are any medical problems we are not aware of, the prospect of repeated MRIs scared me off. She is a very healthy child. I'm not about to test the potential negative impact several MRIs over the course of two to three months might have on her health in the long run.

But what would other parents do? Would they be less concerned? Am I just overprotective? Did I let my personal negative experience get in the way?

See, when I was in third or fourth grade, I think a study of some sort was done involving children at my school (not in the US) involving the effects of fluoride on their dental health. My parents cannot recall whether it was officially a study. Anyhow, parents were offered to have their child take a fluoride tablet each day for about a year. The tablet was handed out and taken in school. I was the only child in my class whose parents had declined the fluoride tablet for their child. They were suspicious of the whole deal. Now, I know the effects of fluoride on teeth are supposed to be beneficial and many US municipalities add fluoride to the public water. But in my case, my non-participation in the fluoride tablet offer must have been a problem.

All I know is that at my next school dental check-up the school dentist supposedly found caries in one molar and send me to my regular dentist to have it removed. My regular dentist couldn't find it but did the procedure anyway indicating that he and also my parents would get into trouble, if the procedure wasn't done and the form wasn't signed. I very vividly remember my regular dentist's disgust because my teeth were in perfect health. Surprisingly enough, the next year we had a new school dentist and there were rumors that the old one had been forced to quit. And I'm the one who had to suffer through an apparently unnecessary dental procedure and resulting consequences of amalgam poisoning.

As a result, I would encourage any parent to thoroughly consider their child's participation in a medical research study. No matter how harmless it sounds, it might carry great consequences for your child. And the scientists involved might not always have the child's best interest at heart.

But medical research is necessary. It is important to know that drug and other treatments are safe for children. And under some circumstances the answer whether a child should participate is probably easier to make for a parent. For example, if a new drug or treatment is a child's only chance for survival. Who wouldn't want to hold on to the only glimmer of hope? It's also easy if the study participation only involves a harmless and simple health or cognitive exam. That's just basically a free evaluation of your child's health, right? In my child's case I would have been less concerned, if only one MRI would have been involved. In the UK study there was no indication of drug involvement or the like.

But what about regular medical studies? Although in a controlled environment, the child might still be subjected to more harmful elements. This could involve several medical examinations including x-rays, MRIs, blood tests, spinal tabs, and so on. It often involves the intake of drugs in one form or another, or the participation in a series of some sort of therapy. If the study involves a healthy child, how can a parent with a good conscience subject a child to that?

It turns out I'm not alone with my concerns. According to a report by the University of Michigan C.S. Mott Children's Hospital National Poll on Children's Health many parents fear their child might potentially be harmed and just be a "guinea pig." Only 30% of the parents were willing to let their child(ren) participate in a medical research study, if the study involved a drug that had been shown to be safe in adults. Although 92% of the parents questioned for the report have never been asked to have a child participate in a research study, many were willing to consider it, if the risk of harm was minimal. 25% would let their healthy child participate in a study, and 36% indicated they would let their child participate if it suffered from the disease being studied. Although it is nice to see only 17% of the parents see a form of compensation as a persuading factor.

Still, 60% of the parents indicated they would not want their child to be a "guinea pig" with 41% thinking that research studies on children are inappropriate. And although I do understand that medical research is important to find treatment solutions and to test new medicines and their effects on children, I share the prevalent sentiment of the parents involved in this poll. I don't want my children to be harmed in any way. And even with the promise of minimal harm one just never knows what could happen to the child.

As for me, sorry, none of my children will be a 'guinea pig' unless the procedure or medication is their only hope. I don't think I could live with the thought of even having remotely harmed any of my children in any way, not even for the sake of medical research and the benefit it may have for others.