Beyond Regulation
Ethical Questions for Research With Children

María Claudia Duque-Páramo
Pontificia U Javeriana

Cindy Dell Clark
Pennsylvania State U

North and South Americans, as well as Europeans, are apt to think of children as passive recipients of protectionist treatment by elders, including during research. Children, it is assumed, are vulnerable and unfinished, as they have yet to fully progress towards maturity.

To be sure, children’s bodies, emotions and physiology are different than adults, bringing about greater risk of harm from abuse or maltreatment, including harm during the research process. Yet paradoxically children are social actors and persons in their own right, with concerns and reactions all their own.

A Colombian girl, interviewed (in an IRB-approved study) at nine years of age, told the story of how her cousin had raped her three years earlier. The child nevertheless did not see herself merely as a powerless victim: “Adults think children are fools, and that’s not true,” she told Duque-Páramo. It is important that ethical practices do not make fools of children like this girl, in the act of protecting them.

Protectionist Regulations
In 1983 the US Department of Health and Human Services enacted regulations for research involving children. These regulations require that an Institutional Review Board approve any proposed research, that the parent of the child consents (gives permission) and that the child assents (willingly participates, although “unable” to consent). Further, the regulations direct that there be minimal risk from research.

Implementing regulations can be thorny, if the researcher seeks to take a child’s perspective and self-agency fully into account. Children are complex social beings, difficult to reduce to essentialist notions of “risk” or “assent.” Such constructs are grounded in intricate, dynamic cultural and familial contexts. In traumatic situations (such as divorce, immigration, illness, grief, or poverty) children are known to be sources of emotional, physical and economic support to adults, not just vice versa. In some contexts, children may tolerate injury, or recover more readily from acute diseases than do adults, particularly the aged or infirm.

If we choose to avoid the adultist presupposition that children are “fools,” and the protectionist presupposition that they are in all respects weaker than grownups, a critical stance towards ethical review would raise several problems or questions, questions we pose for consideration, without providing definitive answers.

Consent and Assent

Is it fair that adults should “consent” to children’s research participation while children take a lesser role of “assenting” to research?

Can we assume that participation has a full measure of permission, based on parental consent? We know that parents can be a source of pressure for their children to agree to participate in a study. The ordinary power structure of adult-child, physician-child, teacher-child means that if these gatekeepers agree to a study of children under their purview, children are left with little choice than to participate, for they need to maintain ongoing relationships.

In a situation observed by Myra Bluebond-Langner, children who are deathly ill are unlikely to challenge parents who consent to a medical trial; rather most children seek to avoid the strain of discord. As child-centered researchers, shouldn’t we advocate, if possible, for a consent process that allows children fuller, deeper participation in consent, perhaps even allowing the child’s view to bear more weight than parental or adult permission?

Benefits of Research

Who is benefited by the research, given the purposes for the investigation?

Traditional developmental research has commonly had goals that center on adults’ concerns, such as theories relevant to the aims of socializing children or educating children. But does the research give voice to children’s own concerns, issues and needs? A more child-centered paradigm for research would place children’s concerns in central focus, and would pursue those concerns (for example, research about play or about adults’ suppression of play). In pursuing child-relevant studies, research would adopt a methodological stance that is relevant to, and comfortable for, children.

Authority and Ownership

Considering that children are full-fledged participants with agency, doesn’t it follow that the materials produced in research are their products?

How can children’s authorship and ownership be taken into account? Some children may prefer to keep their original work or drawings, letting the researcher make photocopies or photographs. Some children may prefer that their work is publicly available, rather than governed by privacy requirements. Some may allow the researcher full stewardship of materials. Giving this choice to children, just as we might to adults, is an idea worth discussing as a matter of informants’ rights.

As in any adult-child relationship, issues of power underlie the researcher’s role. Some adults and institutions, in giving permission for an investigation, may expect the researcher to represent adult authority.

Do ordinary adult, ascendant roles allow for establishing trust and rapport, needed for effective ethnography?

Or do effective ways of studying children require a more equitable sort of sincerity, interest and communication? How can a researcher fulfill the role of protection without power-laden authority? This issue pervades the literature discussing child-centered research methods, in which some ethnographers take an authoritative role, but others strive for a more child-like, “least-adult” role.

Crossing Age Boundaries
Just as ethnographers have had to tackle the implications of crossing gender, ethnicity and social class boundaries in research, so do researchers need to reconsider social constructions of children as naturally disempowered and subordinate. The issue of age-based subordination of children in research, critically examined, opens up new vistas of generational distinctions and relations. Playing with and working through the implications of this view are essential to a fully child-centered framework. Adult researchers have a big opportunity to grow from the challenge.

María Claudia Duque-Páramo and Cindy Dell Clark are conducting research concerned with child-centered qualitative methods and issues. Both are founding members of the Council
on Infant and Child Health and Welfare, a special interest group of the Society for Medical Anthropology.