The American Journal of Bioethics

I agree with David Wendler and Seema Shah (2003) that most children age 14 and above are capable of providing a level of assent to participate in nonbeneficial research that approximates fully informed consent and that all children should have their dissent respected in the context of nonbeneficial research. However, I take issue with their suggestion that assent not be obtained from school-age children below the age of 14 years.

In making their case for fixing the age of assent at 14 years, Wendler and Shah equate capacity to provide assent with capacity to provide valid informed consent. This divides children into two groups: those with fully developed decision-making capacity and those without it. However, this model fails to take seriously the group of children who possess some ability to make decisions: those with developing autonomy (Strong 1995).

Assent should not be equated with consent. The purpose of assent is not to treat children as if they are capable of making decisions that are as fully informed and autonomous as those made by adults, nor is it to make exception for those children who have already attained adult-like decision-making capacity. The assent requirement reflects the belief that even though some children might not completely understand or consider all the implications of research participation, their level of understanding and decision-making ability are sufficient to decide whether they'd like to participate in an activity that offers no possibility of direct benefit to them. In the context of a decision that offers no real risk, it seems extreme to argue that school-age children should not have a voice regarding their proposed participation because they lack the capacity to understand altruism. This sets a very high standard for assent. While an appreciation for altruism might make a child more likely to assent to participation in nonbeneficial research, it is not clear that it should be a necessary condition. I suspect few would challenge an adult who lacked the ability to understand altruism yet provided an otherwise competent consent to participate in research.

The value and justification of the assent requirement might rest more in the principle of beneficence than the principle of autonomy. We involve children in this sort of decision because we believe it is good for children to have something to say about whether someone can involve them in an activity that they might find objectionable when that activity does not directly benefit them. I would like to cite four benefits the assent requirement offers to school-age children.

First, assent reminds us that children should be treated with dignity and respect. Bartholome (1995) argued that "Respect for children as moral agents requires a respect for the developing capacity of the child for making choices, for the exercise of autonomy." Most school-age children possess the capacity to understand what they are being asked to do in the setting of nonbeneficial research (i.e., answer questions or have blood drawn) and to understand that this activity is not something they must do. While a complete understanding of the investigator's purpose and an understanding of altruism might be ideal, they are not necessary in order for children to decide whether they want to participate in research procedures. It would be disrespectful to attempt to involve children without first discussing the procedure and securing their permission. One does not have to be a fully autonomous individual to be owed this level of respect in negotiating the boundaries of interactions with others.

Second, permitting children a shared role in decision making benefits their development as autonomous individuals. Children work hard at developing autonomy. To become autonomous individuals, they must practice self-governance (Bartholome 1995). King and Cross (1989) have argued that a

"developmental" perspective on the process of obtaining informed consent establishes that it is part of the physician's role to use consent situations to promote the patient'...