Protecting children: through research or from research?

Children pose a dizzyingly difficult problem for research ethics.

One of the most important tasks of research ethics is the protection of human research participants. This significant aim is realized above all through the requirement of proper information and consent procedures.

But children often cannot be protected though these means. They are too young to understand information about research and to give their own autonomous consent.

Children often are excluded from medical research. Since they cannot be protected by the standard ethical precautions, they can be protected only by being excluded from research, so to speak.

The result, however, is that “experimentation” on children in practice moves elsewhere. It moves to the prescription of medical substances to sick children in health care.

We often don’t know the side-effects of medical substances in children; at least not as well as we know them in adults. We often don’t know what dosages are required in children to gain the sought-after effect. We often don’t know when the dosages become toxic.

As a consequence of this, medical prescriptions to children lack the scientific evidence that we have for adult patients. Moreover, when children become sick, they may be “protected” as patients by being denied what could be the most effective medical treatment. Doctors cannot prescribe potent medical substances to children if they don’t know their effects in the body of a child.

The dizzying difficulty can perhaps be simplified thus:

  1. Adults can be ethically protected as research participants. Therefore, scientific knowledge is gained that protects them as patients too.
  2. We cannot protect children as research participants. Therefore, we cannot protect them as patients either (at least not as well as we protect adult patients)

There is growing concern among ethicists about this situation. More knowledge is needed about children’s responses to various medical treatments. Otherwise they cannot be given the best possible treatments when they are patients. That, however, requires more clinical research with children. – But how can we ethically justify such research?

The problem is discussed in the current issue of The American Journal of Bioethics. A target article by David Wendler is followed by seven open peer commentaries.

If you are interested in the problematic, I strongly recommend reading this discussion and considering whether the attempted justifications get to the root of the dizzying problem.  One thing is clear, though:

Protecting children ethically by excluding them from research participation is not the unambiguously good deed it may appear to be.

Pär Segerdahl

We like challenging questions - the ethics blog

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