Experimental drug treatment and potentially fatally ill children

This study is concerned with the moral problems which arise when parents are presented the option of including their young, potentially fatally ill child in Phase 1 chemotherapeutic research. Two basic issues may conflict in such an instance: 1) the interests and well-being of the child, and 2) the interests of society. I argue that parents ought to use the following principle of proxy consent in this situation: they ought to attempt to secure the means to a pleasurable life and see that no action is taken toward the child which significantly interferes with the means (and thus the end) being achieved for the child. This principle will allow for participation in the research only if the child will be included in the later stages of the study where the dosage amount is potentially therapeutic.

I then expand this principle to apply to nontherapeutic childhood experimentation in general. I conclude that such research is permissible if and only if the research does not constitute significant harm or risk to the individual child. This conclusion is compared with the views of Paul Ramsey, William E. May, and Richard McCormick. Ramsey and May are found to be too restrictive in their views since they rule out all non-therapeutic research, even though it need not necessarily significantly interfere with the interests and ends of the child. McCormick's view is also iii

iv argued against since it construes young children to be moral agents. I deny this point. I also argue against the claim, both morally and empirically, that the research is permissible since it will benefit the greater good of society. Nor is it permissible to allow for the research on the grounds that it will provide the parents with hope for their child. Finally, I argue that the physician ought to provide all the specific information necessary to the parents so that they will be able to make a rational decision concerning the complex issue at hand.