In order to conduct a sample survey, I created 6 questions that have been inspired by the research of the Nuffield Council on Bioethics. These questions have been asked to and discussed by a focus group of 5 volunteers, 4 of which were women. The group of volunteers consisted of 4 different nationalities and cultural backgrounds. Each question was highly discussed by all volunteers. However, the results of the sample survey cannot be seen as representative for the research of the Nuffield Council on Bioethics.
First of all, the 6 questions are presented in the following:
- What do you think of medical research on humans in general?
- What do you think of medical research on children? (What about childhood diseases?)
- Would you let your child take part in a medical research program? Why? Why not?
- Who do you think should decide whether a child takes part in medical research? How involved should the child be in the decision?
- What do you think of rewards or compensations for children taking part in medical research? Undue incentive or thank-you gift?
- What is the researchers' responsibility in medical research on children? Should they invite children to take part or not? What should they consider, when making this decision?
When being asked the first question, the focus group came up with several thoughts on medical research on humans in general. One of the volunteers pointed out that medical research on humans is essential for progress in medical science, however another volunteer was concerned that participants are not always fully disclosed about possible consequences and some might even only do it for the money. Eventually, the focus group agreed that medical research on humans is okay under certain circumstances. These are, for example, that the medicaments have to be approved and tested on animals first and that participants should be at least 18 years of age and fully informed about possible side effects.
The second question immediately aroused aversion among all members of the focus group, because children are in their opinion too young to take part in medical research. The volunteers also feared that parents facing financial troubles might let their children take part in medical research without considering the consequences. At this point of the discussion I added the following question: 'What about childhood diseases then?' This changed the point of view of the focus group. They agreed that medical research on children is acceptable, if the child suffers from a disease and the medicament could either improve its living condition or save its life. As these circumstances were set as conditions for children taking part in medical research by the focus group, all the following questions have been answered assuming that these conditions are met.
With regard to the third question, the focus group discussed that it would depend on the situation whether they would let their child take part in medical research. One of the volunteers explained that she would not let her child take part, if there were other ways to treat the disease. But if there were no other ways and the child is old enough to understand the situation, she would explain everything to the child and thus involve it into the decision-making process. Another member of the focus group intervened at this point, stating that possible side effects still have to be taken into consideration, before making a decision. Yet, they agreed that in case the child is fatally ill, the medicament might be worth a try, even if the odds of success are low.
Regarding question number four, the age of the child is in the opinion of the focus group the crucial point. They came to the conclusion that the child should make the final decision, if it is old enough to be aware of its sickness and understand the consequences of taking part in medical research. One volunteer suggested that the child should be able to discuss the matter with the therapist or researcher, as it should not be influenced excessively by its parents.
As for question number five, the focus group agreed that they do not support compensation for children taking part in medical research as they fear the parents' decision might be influenced by it. They believe that the chance to improve the child's living conditions or even save its life should be reward enough.
Question number six was highly discussed by the focus group. The volunteers were of the opinion that the researchers' responsibility is to inform the parents about possible side effects and explain everything to the child in simple words. Researchers should also make sure that the child does not suffer while participating in the research. The members of the focus group were also concerned about researchers inviting specific children to take part in the research. They therefore suggested that researchers should release an announcement, for example in a journal that specifically publishes news about the particular disease. Yet, they should not release any announcements, while the medicament is still in test stage.
Having conducted the sample survey, I believe that the discussion among the focus group contained a wide range of important points that have to be considered in medical research on children. I was impressed that each volunteer could imagine how difficult it would be to face the ethical dilemmas in medical research on children. All the volunteers were highly interested in the topic and each one of them stood up for their opinion.