'Best interests: The ‘best’ way for courts to decide if young children should act as bone marrow donors?' by Shih-Ning Then in (2017)
Medical Law International 1–40
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Young children who are called upon to donate regenerative tissue – most commonly bone marrow – to save the life of a sick relative are in a unique position. The harvest of tissue from them is non-therapeutic and carries the risk of physical and psychological harm. However, paediatric donation is relatively common medical practice around the world. Where some doubt exists over the legality of allowing a child to donate, courts can be asked to authorize the procedure and in doing so will apply the ‘best interests’ test in making their decision. How are a young child’s rights recognized in such a situation? This article considers whether the best interests test is the ‘best’ test to be applied by courts when cases of potential child donors come before it. The approach of courts in three jurisdictions is analysed, and problems in the application of the test in this context are discussed. While the continued use of the test by courts is supported, the way the test has been used by courts is critiqued and recommendations made to better respect the rights of the potential donor child.
Children who act as regenerative tissue donors – providing bone marrow or periph- eral blood stem cells (PBSCs) – can potentially save the life of another. The great good that can come about through their participation is at the cost of donor children undergoing physically invasive and unnecessary medical procedures. The non- therapeutic element of their involvement raises legal and ethical issues related to appropriate decision-making on behalf of children by parents, clinicians and courts and child donors’ vulnerability in being exposed to physical and potentially psychological harm.
This article focuses on the appropriateness of the legal best interests test applied by courts from three jurisdictions – Australia, England and the United States – in applications for young children (i.e. children who are not ‘Gillick competent’) to be used as a tissue donor for the benefit of another. While it is acknowledged that applications before the courts are rare – with parental consent and/or legislative conditions being relied upon in the vast majority of circumstances – it is argued that these cases remain important. Increasingly, the medical and wider community has acknowledged that donor children have not been given sufficient attention; to date, their individual rights have not been the focus in the context of the sick recipient’s situation. These rare cases are therefore important for two reasons: firstly, the cases that come before the courts will be those that are most ‘controversial’ – there may be disagreement between parties, questions as to whether legislation can be satisfied or other uncertainties – as such they will be looked to as guidance by others when faced with similar situations. Secondly, today with an increasing focus on children’s rights – including rights to participation and increasing respect for children in the clinical domain – this impacts on how donor children are viewed. How courts treat them and how decisions about them should be made is therefore important. Since the wide adoption of the United Nations Convention on the Rights of the Child (the ‘Convention’), the way children have been viewed within society has changed in most Western societies. While the United States is not a party to the Convention, the discussions in this article of children’s rights to have their ‘best interests’ used as a guiding principle and their right to participate in decisions affecting them are not irrelevant to that jurisdiction.
Generally, in the Western world, children are no longer solely viewed as recipients in a traditional welfare-based model. Instead there is increasing acceptance of the need for child-centred approaches that recognize their rights – as identified under Article 12 of the Convention – to be involved in decisions affecting them. Such an approach is more cognisant of a child’s individual interests as separate from their parents’ interests or the interests of others. These rights extend to young, non-Gillick competent children. The Committee on the Rights of the Child has stated that, ‘[c]hildren, including young children, should be included in decision-making processes, in a manner consistent with their evolving capacities’. This is highly relevant in this context where a decision about whether a child should undertake a non-therapeutic procedure for the benefit of another is being made.
Internationally, the best interests test is recognized in Article 3 of the Convention as the appropriate standard to govern decision-making on behalf of children. Despite this, the standard has been much maligned, both generally and in this context. Difficulties arise in applying it where no physical benefit for the donor child exists and some physical harm is suffered.
While there are arguably many rights under the Convention that might be applied in the child donor situation – that is, the right of the child to physical integrity and dignity, to protection from harm, to have family relationships protected and so on – the focus of this article is on the child’s right to participate in court decisions (Article 12) and the appropriateness of the best interest standard (Article 3).
