Parents in favor of research on children

Many drugs are not tested on children because testing entails a risk -children are not just small but are also busy developing their bodies.

A major interdisciplinary study at Uppsala University shows that Swedish parents-to-be think that children should be included in research.

The participation of children is vital if safe and age-adapted treatments are to be developed. But children seldom take part in research studies, which means that drugs have never been tested on children and are therefore not evidence-based (based on proven experience) in the same way as those for adults. This can lead to unforeseen side effects of treatments, since children are not just small adults but rather growing individuals.

Taking part in testing takes time and may involve risks, which must be weighed against the good of attaining knowledge and safe treatments. This balance between risk and usefulness is ethically important.

"Our desire to protect children from unnecessary suffering has led to their being systematically excluded from potential advances in research, says Alina Rodriguez, who sees an international consensus beginning to form to include children in medical research.

Together with associates from the Faculty of Medicine and the joint Center for Bioethics at the Karolinska Institute and Uppsala University, she has run a study on the attitudes of 863 expecting parents regarding children participating in research and who, in that case, should bear the responsibility for making the decision. A large majority felt that it is necessary for children to take part and that the care-giving physician should be involved in the decision-making process.

"This view is at odds with the international trend in which the responsibility for weighing risk against utility is being placed with a regional entity, says Mats G Hansson, a researcher at the Center for Bioethics at the Karolinska Institute and Uppsala University.

They also studied the parents? willingness to have their own child participate, and the results reveal a favorable attitude. Most respondents thought that participation was self-evident, if the medicines being tested are scientifically relevant. In summary, the study shows that parents want to do their part in enhancing knowledge in order to improve treatments for children.

"Our conclusion is that what is needed is a partnership between parents and researchers, with the aim of ensuring that children are not excluded from research, says Alina Rodriguez.

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