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Reasons for Participating in Medical Research

Clip Number: 7 of 12
Presentation: Children and Research
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Reviewed By: Arthur Schoenstadt, MD
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As you think about whether or not your child should participate in research, it might be helpful to know a few reasons why others choose to participate.
Some adults volunteer for research for altruistic reasons -- that is, to help others in the future. Others hope their own health will improve from participating in the study. We understand that it's a lot harder for parents to decide whether their child should participate -- especially if the study has risks. Yet, many parents do give their permission, and many children participate in research for a variety of reasons.
In studies that have little or no risk, some parents feel it's okay for their child to participate for altruistic reasons.
Other research involves a little more risk, and is designed to gain knowledge of a specific disease or condition. Parents whose children have this disease or condition may allow them to participate in this type of research. They hope that the study will help investigators learn more about the disease or condition, and that in the future, other children (and perhaps even their own child) may benefit from better treatments.
In other cases, parents allow their child to participate because they believe the study may improve their child's health - even though this is just a POSSIBILITY, and is not certain. These parents feel that the possibility of benefit to their child outweighs the possible risks of the study. They also believe that participating in the study is a better choice for their child than any of the other choices, such as the current standard treatment.
When effective treatments aren't available, or when other treatments have failed, some adults -- and some parents -- choose an experimental treatment. They hope it might be better than the alternatives. For example, parents of a child with cancer might accept the potential risks of an experimental treatment instead of choosing the standard treatment that reduces symptoms and provides comfort. They do this hoping that it might extend their child's life.
There are many reasons why parents allow their child to participate in research. However, each family's decision is a personal one. In making this decision, it may be helpful to write down your reasons for wanting your child to be in a research study, and also the reasons why you think you should say "no." You can discuss these reasons with the investigators and also with your child's personal physician. Depending on your child's age and understanding, you can also discuss the study with your child before making a decision.

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