A developmental approach to child assent for nontherapeutic research

Clarifying assent in pediatric research

“…In addition, they seem more vulnerable to the influences of their surroundings (eg, parents), and the voluntariness of their decisions is at least questionable. 33 However, typical for children is that this incapability is temporary, as their capacity to make autonomous decisions develops as they grow older.…”

“…20,23,33,39,[47][48][49][50] When one would ground assent in respect for autonomy, it is one of the two: either children are considered incapable of autonomous decision-making and then it does not make sense to use a concept that requires autonomy, or a child can be considered competent to make autonomous decisions and then it would be untenable not to grant the child the same level of control as an adult, at least from an ethical perspective. In that case, the informed consent procedure could be expanded to apply to competent children as well.…”

“…The first ground in this category, respect for the child and its developing autonomy, 23,24,33,39 has also been referred to as the 'development' rationale. 20 Supporters of this view generally argue that the principle of respect for a person requires that children are empowered to participate in decision-making to the extent of their capacity.…”

Involving children in non-therapeutic research: on the development argument

“…As has been noticed in the literature, whether any lessons will be learned at all, and what lessons that might be, depends also (and obviously) on the age and maturity of the relevant children (Bartholome 1976;Ackerman 1980;Redmon 1986;Miller and Nelson 2006;Wendler 2012). It goes without saying that involving newborns in research will contribute nothing to their moral or personal development, other than by farfetched and unpredictable routes.…”

“…Since then, the argument has reappeared with some (albeit infrequent) regularity, in various guises. Sometimes it has been quite clearly endorsed (Gaylin 1982;Redmon 1986;Miller and Nelson 2006;Williams 2012). Williams, for example, being the most recent contributor, has argued that ''[p]arents and educators have every reason to enlist children in those schemes of cooperation that they believe are worthwhile'', including, on his view, certain non-therapeutic research.…”