 | Sara Dekking MA, PhD student - UMC Utrecht |
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02.02.2015-18.03.2015
Ethical evaluation of dependent relationships in pediatric cancer drug reseaerch
Objectives The goal of my stay at the Brocher Foundation is to finish two normative papers that will both be part of my thesis. The first paper concerns the role of altruism in paediatric oncology with regard to the decisions of parents about research participation for their children, who are too young to decide for themselves. Some authors have touched upon the complexity of deciding for one’s child to take part in a trial, but none of them has critically examined the possible role of altruism in such decisions. It is generally accepted that if parents indicate that they enrol their child ‘for science’ or ‘for the benefit of others’, this equals making altruistically motivated decisions. However, some conceptual confusion seems to be at play here. Some characteristics of altruism in the literature, such as that altruistic agents need to experience a loss to their welfare, are not compatible with the situation of parents consenting for their child; not the parents themselves, but the children are the ones who might encounter the risks of research. Yet, since children are not the ones who decide (they are volunteered by their parents), it is also conceptually difficult to denominate the child as altruistic. The notion of ‘altruism by proxy’ has been suggested to indicate that a different kind of altruism is concerned, but this concept still needs to be examined and elaborated. Hence, I will critically examine the concept of ‘altruism by proxy’, to assess whether it can be considered a valid justification for parents to enrol their child. The second paper will address the limits of doing research on children with cancer, in case survival rates have reached a certain level. If the vast majority (over 90% over children) survives as a result of current therapy, is it justified to conduct further research on this group of children? We will discuss the case of Acute Lymphoblastic Leukaemia (ALL), since for sub groups of patients survival rates are as high as 95%. From interviews that I have conducted I have noticed that most paediatric oncologists do not see any limits to the conduct of research, besides when a survival rate of 100% is reached without any significant side effects and/or long-term effects. However, research poses risks to children. For example, studies to minimize side effects and long-term effects involve a risk of undertreating patients, which might decrease current survival rates. Furthermore, these children may also be invited to participate in research that will not be beneficial to them or to the sub group of patients they belong to. Since the patients in question are children, this is ethically questionable, as they form a vulnerable group of patients which should only be included in research when they or their group can benefit from the research. I will examine the concept of social value, to assess whether it can be used to justify continuing (non-therapeutic) research on children with very good prognoses.
One minute with... Sara Dekking from Fondation Brocher on Vimeo.
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