Ethics of children in clinical trials – Direct Interests
This discussion point leads on from the previous one. One interpretation might be that, for something to be in someone’s “direct interests” means either it is something they immediately need and is likely to lead to a direct benefit to them, or it is something that they want and have chosen for themselves because it is something that they value. In the context of children participating in research these conditions might be difficult to meet. One reason is that the research may not deliver the thing that they immediately need. Another is that the child may not be able to choose for him or herself because they are too young or too sick to understand or because they are incapable of giving consent. In most instances research begins from a position of uncertainty or ignorance so it cannot be known if there will be direct benefit to the child or not.
It is possible to regard research as a general good and therefore something worthwhile to participate in as a contribution to a common good. A common good is a benefit in which we all take part. However we would still be left with the dilemma as to whether it would be ethical to include a child in research irrespective of whether they understood this claim about a common good.
If the restrictions argued for in the paper are justified then it may lead to the conclusion that there are just some research questions that cannot be addressed in children. This may in turn imply that some children must live with their health problem because it would be a greater wrong to expose them to research that offers no direct benefit.
An alternative view is to apply the argument about common interests developed in the previous discussion point. However in the context of children one might argue that the relevant “society” is not society in its broadest sense but the society of children with a similar condition. So here one could argue that it would be justified to include children in research where they might not benefit as long as risk to them was minimal and the group of children with a similar condition are likely to benefit.