Moral and legal reasons for altruism in the case of brainstem biopsy in diffuse glioma

"Moral and legal reasons for altruism in the case of brainstem biopsy in diffuse glioma." British Journal of Neurosurgery, 22(5), pp. 617–618

Conor Mallucci

Deputy Editor, British Journal of Neurosurgery

Editorial

The main ethical question arising from Leach et al.'s paper is whether children should undergo invasive procedures, such as brainstem biopsy, in the name of research. John Harris has argued elsewhere[1] that participation in scientific research is a moral duty. He premises this duty on twin pillars, the obligation to do no harm and an appeal to basic fairness. He suggests that our obligation to do no harm means that where our actions will prevent serious harm to others we should act, because to fail to do so is to accept responsibility for harms that occur. Basic fairness also requires us to act because we all benefit from the existence of good research. Failure to do so would amount to taking a free ride on the backs of those who do participate. Harris additionally argues that participation in research could be considered to be in the public interest and, therefore, mandatory, in some circumstances and that in consequence it may be legitimate for the state to legislate compliance as is done in the case, for example, of compulsory jury service. Whilst not advocating compulsion, Harris suggests that in narrow circumstances it might be justifiable.

In view of this we must take seriously the idea that there is a duty on citizens to act in the public interest when the costs to themselves are commensurate with the benefits to others. All children suffering from diffuse glioma have moral reasons to undergo brainstem biopsy for the purposes of research, which will benefit others given the hopelessness of their condition and their parents have the same moral reasons to consent on their behalf given that the children cannot consider these reasons for themselves. Notwithstanding this, there is also a societal duty to protect research participants, which must counterbalance any obligation to participate. As a vulnerable section of society, we could argue that children should be shielded from any presumption that they must undergo invasive procedures for research purposes. However, given the seriousness of the condition, and the significant impact it has on children as a group, as long as appropriate protective measures are clearly in place protecting parents and children from undue pressures, it would seem that there are strong moral reasons that favour their participation and should be taken seriously in such cases and that parents would not be acting wrongfully in any way if they accept the altruistic reasons that exist to consent to brainstem biopsy. Ultimately, the decision is one for the parents, but we suggest this decision should be made in the light of the benefits to other children in similar circumstances and not be made only in the light of the particular child's interests narrowly conceived.

Would the law then, offer a different perspective? Doctors have a legal duty to act in the best interests of their child patients. That is to say, doctors have a legal duty to act morally by respecting the interests of children. When deciding whether to biopsy a child's brainstem, the first question must be whether it is in her best interests. Leach et al. propose a number of reasons why a biopsy would be in the best interests of a child with a diffuse glioma, namely its diagnostic success, the likelihood that it will alter the management of the condition and that it is a relatively safe procedure. However, they also cite Epstein and Albright who both concluded, independently, that brainstem biopsy is not necessary, since it cannot be representative of the whole tumour, and it does not have much diagnostic value. Since there seems to be a strong body of opinion on both sides of the question of whether a biopsy is in the best interests of a child, for the purposes of the law either answer could be legitimate.

This raises the question whether the need for research to increase understanding of diffuse gliomas is sufficient to tip the balance in favour of undergoing a biopsy. In Re Y,[2] it was held that best interests include emotional and social interests, as well as medical interests. Helping others is an altruistic notion that children above 7 years can comprehend. Experiencing altruism by taking part in research could benefit their emotional interests. As long as the biopsy was not against the child's medical interests, this boost to their emotional interests might just tip the balance.

However, it is their social interests that weigh more heavily. Whilst the law could not go so far as to make research participation a duty, despite arguments that it is a moral duty,¹ the courts have recognized the importance of community interests in deciding a child's best interests.[3] Children as a group are under-researched. The most frequent justification given is that it is not in a child's interests to participate. This attitude has serious consequences. Many drugs routinely administered to children are adult drugs, used off-label. Since children are not simply mini-adults, this causes problems with under-dosing and over-dosing, and increased chances of unexpected adverse events.[4] Justifying non-therapeutic research on children, such as a brainstem biopsy with no diagnostic value, is much more difficult than justifying therapeutic research, precisely because there is no therapeutic benefit to rely on. However, not being able to carry out this research means that we do not have a proper understanding of the diseases, which only affect children, or conditions that affect children differently to adults. It means that we are not in a position to develop good treatments for paediatric conditions. The EU is seeking to rectify this problem with Regulation 1901[5] by requiring pharmaceutical companies to carry out paediatric research on new and existing products. If the scheme works it will do wonders for paediatric medicine, but it is imperative that we also do non-therapeutic research to understand how and why diseases affect children. Only then will we be in a position to develop new medical and surgical treatments for conditions which harm our children. It must be in a child's social interests to have suitable medical treatments for herself and her fellows.

Once emotional and social interests are taken into account there seems little doubt that brainstem biopsy could be lawful even if there was no benefit to the child's medical interests.