colleagues (2003) found that the two groups agreed approximately three-quarters of the time on decisions involving an asthma research vignette. Both, however, claimed that they had “ultimate responsibility for the participation decision” (p. 79).
Bluebond-Langner and colleagues (in press) have stressed that one complication in determining what gravely ill children understand or want with respect to treatment or participation in research is that these children, in particular, may not express their concerns, wishes, or fears to their parents, clinicians, or investigators. This reticence may reflect not only the children’s deference to their parents but also the children’s desire to protect their parents from the additional distress of knowing their child’s fears or facing the mutual acknowledgment of the prospect of death. The investigators refer to a process of “mutual pretense” that constrains free discussion and questions about treatment or research in the context of grave illness.
Children’s dissent or unwillingness to agree to research participation is not well studied. Citing the work of Abramovitch and colleagues (1991), Thompson (2000b) notes that children may find meaningful dissent difficult “not only because of limitations in judgment, but also because their invitation to participate typically occurs in a context of prior parental permission, institutional support (whether the institution is a school, childcare center, hospital, or other setting), and adults’ interests in furthering the research enterprise” (pp. 164-165).
When a parent believes that the child should participate in research for altruistic or other reasons and the child does not want to participate, the actual decision about research may involve sensitive discussions with the parent and child. As long as the child is not coerced into assenting, it is reasonable for parents to engage in persuasive discussion, for example, about the importance of helping others. Even young children know what it means to “help” someone, although the ability of children to reason abstractly about altruism develops with age. Children also show empathy, sympathy, and other traits associated with the moral motives for adult altruism (Hoffman, 1990; Eisenberg et al., 2002; Bernhardt et al., 2003). Nonetheless, consistent with the regulations, the child’s dissent should override parental assent when the research does not promise direct benefit to the child.
I think that it has to be for children a very interactive process in terms of consent. After I was asked this entire list of questions, I began to question my own first response. I think that just giving a kid a piece of paper, no matter how comprehensible the piece of paper is, is not going to be effective. I think the kid needs to be