Can or Should CAP Be Applied to Child Research Subjects?: A Comment on Kim and Appelbaum

Abstract

As part of a symposium on Capacity to Consent, this Comment explores the use of CAP - a proposed instrument to measure capacity to appoint a proxy - with child research subjects. As with mentally disordered adults, there is a need for special protection of child subjects in research, especially nontherapeutic research or that involving more than minimal risk. The current federal regulations provide inconsistent protection because they defer to state law regarding minors' legal rights. Model codes and professional guidelines are similarly lacking, where they require "assent" from minor subjects who are capable of giving it, but do not respect a refusal of assent in many instances. Young children who are incapable of informed consent (as a matter of fact or law) may well possess the capacity to choose a proxy-decision-maker. Applying the concept of CAP to children and adolescents may provide a valuable alternative to current extremes of giving one or both parent(s) the power to "volunteer" their child as a research subject or requiring a child to prove to an IRB or a court his capacity for informed consent. The ability to choose a proxy may provide greater protection for the child, especially where the research can be done without the child's subject's assent but not without the proxy's consent.