Now that we've discussed what medical research is, let's talk about some common misunderstandings parents may have about research.
Some parents think their doctor or the research team wouldn't suggest a research study unless it was known to be the best thing for their child. This is not true. It's true that doctors and investigators would only suggest a study if they thought it would be a reasonable choice for your child. However, research is done to learn - for example, to find out which treatment or test is better.
No one can guarantee that the treatment being studied will be better than the standard therapies already available. In the end, you - with your child's input, if appropriate - must decide whether the possibility of benefit to your child (or other children) outweighs any risks. You must also decide whether the study is a better fit for your child than the other alternatives.
Some parents also believe that if they are asked to let their child participate in research, they really should say "yes." They also believe that once they agree, their child must remain in the study no matter what. Neither of these is true. You always have the right to say "no" to a research study. If you do say "yes," you are still free to take your child out of the study at any time.
Another common misunderstanding is that your child's health care providers will be upset if you choose not to enroll your child, and that your child's care may suffer. However, your caregivers should support you and continue to provide your child with the same level of care, even if you say no. If you have any concerns about what might happen if your child doesn't participate in research, be sure to discuss them with your child's health care providers.
Parents may also think that if their child participates in research, he or she is guaranteed to receive the experimental treatment. But in some studies, some of the children may receive no treatment, the standard treatment, or perhaps a placebo instead.
Finally, some parents volunteer their child for research because they mistakenly believe the goal of the study is to benefit their child personally. In reality, the goal of a study is to find out how to improve the health and medical treatment of children in the future. As we mentioned before, some studies provide no possibility of personal benefit to the children participating. In others, the benefits may be similar to the benefits of receiving standard treatment outside the study. And in other studies, the experimental treatment may actually be better than the standard treatment. However, this is only a possibility and not a guarantee.