I wonder what you think of the following hypothetical situation, and how you think you would react in such a situation. Your kid has a terminal illness, like cancer or something equally serious, and the standard treatment proved to be unsuccessful. Now, your only two choices are stopping treatment and waiting for your child to die, or trying experimental therapy, during which your kid will be part of research. It is absolutely their last chance. Would you take part?
That is a very interesting question. I would say that the first thing that would need to be taken into account is the age of the child. Id the child were old enough - let's say from six or even years onwards - I think he or she needs a say in the decision. Otherwise, it depends on the suffering of the child. A friend of mine had a grandson with terminal cancer, and they just kept going and going with new treatments. At time I thought "let the boy die in peace already!" but I do realize that it must be different if it is your own child.
I think I am 100% towards the research myself. Now - if my kid were old enough to understand, I would have them be a VERY big part of the decision making process. But, if the chances of survival were realistically slim after exhausting conventional treatment methods - and the experimental methods wouldn't cause unnecessary pain...then I would do whatever I needed to give them every last chance of hope!