Best interests: The ‘best’ way for courts to decide if young children should act as bone marrow donors?

Abstract

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.

Keywords

Best interests bone marrow donor child donors children’s rights court cases

Introduction

Children who act as regenerative tissue donors – providing bone marrow or peripheral 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’)¹ 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.² 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 domain³ – 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.⁴ 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’.⁵ 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).

Risks to donor children

What are children subjected to in acting as donors? They will generally undergo blood tests, medical interviews, stay in hospital for a day, have a general anaesthetic under which marrow will be extracted via multiple needles from their hip bone, or else have catheters inserted into each arm or a central line placed to draw blood from their body, into a cell separator machine. The main risks are associated with complications of undergoing general anaesthetic, pain and infection at harvest sites and the possible need for blood transfusions.⁶ Other serious potential risks include nerve, bone or tissue injury.⁷ Where ‘granulocyte colony-stimulating factor (‘GCSF’)’ – a cell stimulating factor – is given prior to harvest, this carries additional theoretical risks of increased likelihood of leukemia.⁸ Studies show that while the risk of ongoing physical harm is rare, it is often the youngest and smallest donors that endure the biggest physical burdens with increased risks of cardiovascular complications and anaemia.⁹ They are also more likely to need blood transfusions and undergo multiple tissue harvests.¹⁰ Less is known about the long-term psychological impact on children with small-scale studies of former child donors revealing conflicting evidence of psychosocial benefit or detriment experienced following donation.¹¹

It ought to be noted that in most, but not all, cases, an unrelated tissue-matched donor may be available through the international network of bone marrow donor registries.¹² However, for some people, no equivalent ‘good’ tissue match will be available and use of an unrelated donor presents more logistical difficulties (i.e. timing of harvest or infusion in the recipient, transport of the tissue etc.) than use of a sibling donor. Generally, siblings – who may be young children – are looked to as potential donors prior to any search of the donor registries.¹³

In this article, part 1 examines the best interests test from an ethical and legal perspective and outlines the role of courts in applying this test in deciding when a child may act as a regenerative tissue donor. Part 2 goes on to examine the limited case law in the United States and Australia where courts applied the best interest standard when exercising parens patriae or a similar statutory welfare jurisdiction in deciding applications for young children to donate tissue. In England – where no such case exists – a comparative case involving an adult lacking capacity is considered. In part 3, it is argued that the best interests test remains the most appropriate standard for courts to use for child donor applications. Despite shortcomings, when applied correctly, it best serves to focus attention on the donor child’s interests, views and right to participate in decisions relevant to them. However, I remain critical of how courts have applied this legal standard in this context.

Part 1: The role of the courts and the best interests standard

The role of the courts

Ordinarily a court will not be a party involved in deciding whether a child should act as a regenerative tissue donor. This decision usually falls to the parents and medical practitioners of the child. This approach is legally sanctioned (subject to conditions being met) in some jurisdictions through legislation¹⁴ and in other jurisdictions is accepted as the medical norm and as being legally sufficient. This means decision-making by these parties is usually the most important aspect for the majority of donor children (and, as will be shown, parental views do influence court decisions). Despite this, the focus here is on the less common cases where a court has been asked to decide whether a child should donate. Published judgments provide a unique and publicly available window into the factual scenarios that may arise involving child donors and put what is usually a private medical decision into the limelight. The legal nature of the judgment gives the decision-making process a legitimacy that means it will likely be used as a reference point for medical practitioners, parents and lawyers in the future.¹⁵ As mentioned before, such judgments also provide a tangible way to assess whether, and in what fashion, children’s rights to participation in the legal setting are taken into account and how the best interests standard has been interpreted.

A separate question from this is whether mandatory court authorization ought to be required before a child acts as a tissue donor. While my own view is law reform requiring it may be warranted for certain groups of children (e.g. cognitively disabled children) or in certain circumstances (e.g. where there is a dispute between relevant parties – parent, practitioners, child, etc.), it is beyond the scope of this article to comprehensively consider and answer the difficult question of ‘when’ such applications should be made to the court.

There are a number of situations where a court may be approached to provide authorization: where legislative conditions cannot be satisfied; where no legislation is present or some uncertainty as to the legality of using a child as a donor in that specific instance arises; or where disputes between parents or health practitioners regarding a child acting as a donor arise.¹⁶

Best interests as an ethical ideal and a legal standard

The traditional ethical justification for allowing children to be used as tissue donors centres on such procedures being in the best interests of the donor child due to the potential psychological and social benefits accruing to the child. The orthodox view of this standard focuses exclusively on the well-being of the donor child – where a holistic view of a child’s physical, psychological and social interests ought to be considered.¹⁷ Where child patients receive medical treatment, the relevant standard is for such treatment to be in the child’s best interests. To apply this standard to a child donor, even though the child essentially undergoes procedures to provide treatment for another, is therefore consistent with the generally accepted approach.¹⁸

The application of the best interests standard may require decision-makers to attain an ‘ideal’.¹⁹ For example, Beauchamp and Childress state:

The term best is used because the surrogate’s obligation is to maximize benefit through a comparative assessment that locates the highest net benefit.²⁰

This description of the standard accords with the mainstream view; it also mirrors the legal best interests test (discussed in the next section).²¹ The focus on the individual child’s best interests arguably ensures that the child’s interests are not subjugated to the interests of others and remove the threat of a child being exploited – this is a real concern in this non-therapeutic setting. It also accommodates any ethical argument based on Kant’s imperative – that people should not be used as a means to an end.²² A compelling argument can be made that a donor child subject to the best interests test is not only being used as a ‘means’ but rather is being considered an end in him or herself.²³

The essence of the best interests ethical standard is reflected in the test applied by courts exercising welfare jurisdiction on behalf of children.²⁴ Here, the scope of the best interests legal test that is referred to throughout the remainder of the article is described and discussed.

What then is the scope of this legal test? It requires a court to make an independent assessment of best interests for the specific child in question.²⁵ Australia’s High Court has acknowledged that the phrase ‘best interests of the child’ is ‘imprecise’ at common law and no definitive list of factors exists to determine whether it is satisfied in a given case.²⁶ However, in some contexts, legislation provides non-exhaustive lists of relevant factors to provide a framework for determining the best interests of an individual.²⁷ In addition, as discussed below, one US State Supreme Court has developed more certain factors that require satisfaction before a finding of best interests will be made with respect to donation of bone marrow.²⁸

In all cases where the best interests test is used as the guiding principle, the test requires the welfare of the child to be the ‘first and paramount consideration’ by a court exercising parens patriae or inherent welfare jurisdiction.²⁹ The courts will consider not only medical issues (including mental health)³⁰ but also emotional and other welfare issues in deciding whether the test is satisfied.³¹ In making a decision, a court may consider the views of parents and health care professionals; however, it is recognized that parents, in particular, may have views ‘coloured by their own emotion or sentiment’.³² As such, the test applied by courts is an objective one that focuses on the child in question. In light of prevailing views regarding children’s participatory rights, the views of the child regarding issues (i.e. his or her view of their relationship with the proposed donor, how he or she feels about going into hospital for a procedure, etc.) should also be taken into account by a court. ³³

Criticisms of best interests

Despite the best interests standard being the dominant standard for decision-making on behalf of children, many commentators have criticized its application by the courts.³⁴ While some of these criticisms may seem dated, these arguments still apply to contemporary discussions of the standard.

Some commentators consider that the best interests standard is used to ‘cloak’ decisions regarding children that have actually been made for other reasons. Rodham argued in 1973 that the best interests standard was ‘not properly a standard’, rather it was ‘a rationalization by decision-makers justifying their judgments about a child’s future, like an empty vessel into which adult perceptions and prejudices are poured’.³⁵ This suggests that it may not be accurate to say that the standard is used to determine the question of whether a child can act as a donor, but rather the standard is used as a rationalization after the decision has already been made.³⁶ However, determining whether these criticisms are justified is difficult.

Mnookin’s well-known 1975 critique of why the best interests standard was flawed, or at the very least was very difficult for judges to use as a legal principle, still applies today.³⁷ Relevant to the application of the standard in this context is the problematic nature of basing a decision on future eventualities – in this case, predicted beneficial relationships – rather than past acts; the need to assess relevant persons’ dispositions and personalities to determine benefit, rather than specific acts by those people, and the fact that the child, as the affected party, is often not a true participant in the process (a point I return to later in this article).³⁸

In Justice Brennan’s 1992 dissenting judgment in Australia’s Marion’s case, he stated that the test did no more than to identify the person whose interests were in question. It provided little guidance in identifying factors that are relevant to a determination of best interests:³⁹

[T]he best interests approach offers no hierarchy of values which might guide the exercise of a discretionary power to authorize [procedures], much less any general legal principle which might direct the difficult decisions to be made in this area by parents, guardians, the medical professional and courts…[T]he best interests approach depends upon the value system of the decision-maker…[creating] an unexaminable discretion in the repository of the power.⁴⁰

These criticisms gain particular traction where the proposed treatment is of no physical benefit to the child in question, as in the case, where a child is put forward as a tissue donor for the benefit of another.

The best interests standard can also be criticized as unrealistic in focusing exclusively on the interests of the child in question in a situation so clearly of relevance to other family members. Crouch and Elliott criticize the standard as being largely inapplicable to real-life situations where a child is being considered a tissue donor:

The best interests standard is a formal and abstract framework; families are intimate…The best interests standard is impartial; families are often partial and favoritist. Most crucially, the best interests standard is applied to an individual shorn of his or her associations; families are, or can be, intimate collectivities.⁴¹

This criticism has real merit in the donor setting where the usual affected parties are the parents, the sick child and donor child. Expecting an impartial assessment of best interests by the parents in this context is, it is accepted, completely unreasonable if not impossible. However, I argue that it remains relevant and applicable for an independent decision-maker such as a court.

The inherent flexibility and vagueness of the standard means that the application of the best interests standard can take into account factors traditionally associated with other major ethical theories that do not place the individual’s interests as paramount; for example, some ethical theories prioritize the interests of the family over the individual members.⁴² When factors are imported from other ethical theories, they are often subsumed under the ambit of the best interests legal standard without explicit reference or explanation.

This lack of clarity can also result in different methods being used in an attempt to satisfy the standard. In contemporary English cases, a ‘balance sheet’ approach of comparing and weighing the burdens and benefits of the proposed medical intervention has been used – most notably in cases involving treatment of sick children at the end of life.⁴³ However, this approach has not been used in the child donor cases. In the donor context, it appears a number of different approaches to the legal test have been taken:

Some…frame the equation exclusively in terms of harm to the donor: will the possible loss of a sibling cause more psychological or physical harm to the donor than the operation itself? Others…have framed the analysis in terms of the benefits that they and the parents hope the incompetent will realize from his or her participation in the transplant. Some…seek to balance the relative harms to which donors and recipients will be subjected, or alternatively, the relative benefits donors and recipient will realize.⁴⁴

It is also difficult to identify what factors need to be considered and given weight to, in order for the standard to be satisfied. Given the obvious lack of physical benefit for a donor child that has healthy tissue removed, the benefit that accrues must be psychological or social. Courts have often struggled to demonstrate convincingly that the test is satisfied on the basis of psychological or social benefit. However, this is arguably a failing of court judgments to date, rather than an inadequacy of the standard itself when properly applied.

Relevant in this context are other ‘non-therapeutic’ procedures – such as involving children in non-therapeutic medical research – that have been justified by claiming the child will benefit. There a child is subject to invasive, although arguably minor, physical tests that are not directly for the physical benefit of the child. Some have argued that involvement in non-therapeutic medical research nonetheless benefits the participant indirectly and/or psychologically (e.g. through personal gratification, experience of pride in doing altruistic acts)⁴⁵ or by contributing to the child’s moral development.⁴⁶ Similarly, in the context of donation, commentators have suggested that children may reap ‘existential’ rewards or gain ‘the virtues of altruism and social obligation’ through participation as donors.⁴⁷ However, perhaps unsurprisingly, these rather vague justifications of ‘benefit’ to the child have been criticized.⁴⁸

In the context of related tissue transplants where the relevant relationship is likely to be between two child siblings, research does reveal that a child’s ongoing relationship with a sibling profoundly influences them – both positively⁴⁹ and, in some cases, negatively.⁵⁰ Clearly benefits can flow to some when the sibling relationship is maintained; research shows that siblings often serve as role models, confidantes and provide social support with contact often maintained throughout their lives.⁵¹ A sibling death can also, understandably, be traumatic with this sometimes manifesting in children exhibiting anxiety, depression or aggression.⁵²

Cheyette summarizes how the best interests test is usually satisfied for child donors:

[P]ermitting the harvest ensures the child[’s]…psychological well-being by preventing the death of a sibling and by conferring on him or her the benefits associated with altruistic acts.⁵³

While some suggest that these benefits are speculative,⁵⁴ satisfaction of the best interests standard on this basis is still the mainstream ethical and legal justification for children to act as tissue donors.⁵⁵ Despite the criticisms, in part 3, I argue that it remains the most appropriate test for courts to use in these cases.

Part 2: Cases from Australia, England and the United States

Application of the legal test in the context of tissue donation

Few courts have grappled with the issue of whether a non-Gillick competent child can be used as a bone marrow or PBSC donor for the benefit of another. This part focuses on cases where applications to remove regenerative tissue from vulnerable persons were decided using the best interests test.⁵⁶ Before the individual cases are discussed, common factors that appear from the cases are described.

Factors relevant to courts applying the best interests test

The factors considered relevant by the various courts that have decided tissue donation cases vary; however, some broad commonalities can be distilled.

First, all the cases focus on the importance of the potential donor maintaining close relationships with the potential recipient or (more rarely) another family member. This requires courts to receive evidence about and ‘assess’ the nature of the relationships between potential donors and others. The cases in Australia and the United States consider the relevant relationship to be the one between the potential donor and the recipient; if this was considered a close relationship where the donor benefited from the association, both now and likely into the future (assuming the recipient lives), the court was more likely to find that the tissue removal procedure could be in the donor’s best interests. However, as discussed below, at least one English court has looked beyond the donor–recipient relationship and considered indirectly affected relationships that may be impacted by the recipient’s death.⁵⁷

Second, the courts make an assessment of whether the benefit to the potential donor outweighs the detriment of undergoing the procedure. The courts in Australia and England have tended to look at the consequences of having the procedure versus not having the procedure. In doing so, courts consider the possible medical risks, harms and side effects of proceeding as against the possible harms and distress caused to the donor by the recipient dying and the potential psychological and social benefits of the recipient surviving. The US decision emphasized that psychological benefit is likely to be greater where a close relationship exists between the child and the intended recipient.⁵⁸

Third, GWW’s case in Australia made clear that where a potential donor is capable of expressing his or her wishes, those wishes should be taken into account by the court.⁵⁹ While other cases do not expressly mention this factor, in some cases, evidence was given that attempts were unsuccessfully made to explain the procedure to the potential donor.⁶⁰ Today, in light of the focus on child’s rights to participation recognized in Article 12 of the Convention, the participation of a potential donor child and even young children should be sought in judicial proceedings and their views given weight appropriate to their maturity. Indeed, it has been made clear that an assessment of a child’s best interests – as that concept is recognized under Article 3 of the Convention – requires respect for a child’s right to have their views heard and given due weight in matters affecting him or her.⁶¹

Significant reliance is also placed on expert evidence provided by health care professionals to the court – in particular medical practitioners and psychologists.

Having outlined the broad commonalities, the individual cases are now considered.

Australia

In Australia, the nation’s federated structure means that the Federal Family Court and the State Supreme Courts of each State and Territory have jurisdiction to deal with applications for children to become donors. In the past, only the Australian Federal Family Court has dealt with applications for children to become donors.⁶² That court is required to apply a legislated version of the best interests standard that relevantly includes taking into the account a child’s expressed wishes and consideration of the nature of a child’s relationships with other persons.⁶³

In the marriage of GWW and CMW

In this case, a 9-year-old boy was proposed as a donor for his aunt. The child was represented separately enabling the court to receive the representative’s view as to what was in the child’s best interests.⁶⁴

From the non-exhaustive list of factors identified in the legislation as being relevant to a determination of best interests, Justice Hannon considered the most relevant to be: the wishes expressed by the child; the relationship between the child and the proposed recipient and ‘any other factor or circumstance that the court thinks is relevant’.⁶⁵

Justice Hannon considered the ‘critical factor’ to be the relationship between the child and the intended recipient, his aunt.⁶⁶ This was because:

where there is a relationship between the proposed donor and donee and which is of benefit to the donor it is in the best interests of the child that the opportunity be given for the continuation of that relationship which may outweigh the risk or discomfort of a surgical procedure.⁶⁷

While the direct relationship between the child and the aunt was not a ‘special relationship’, it was noted that his relationship with all members of his extended family was ‘close’.

Justice Hannon outlined the possible risks of undergoing both a bone marrow harvest and removal of PBSC via a catheter. The judgment notes the minimal risks of undergoing general anaesthetic, the small risks of bruising, thrombosis or pneumothorax, the post-operative soreness and, where GCSF is used to stimulate the production of cells, the possibility of fever and aching bones.⁶⁸ The risk of a child developing myeloid leukaemia as a consequence of taking GCSF was considered by the parents and Justice Hannon, on the evidence, to be ‘non-existent’.⁶⁹ Recovery following the medical intervention was also noted as rapid.

Significant consideration was also given to the child’s understanding and wishes and the psychological effect if the authorization was or was not granted. While it was established that the child was an ‘intelligent young boy who has an understanding of what is involved’, based on the psychologist’s evidence, the child was not considered Gillick competent. However, importantly, the child’s views were still considered to be important. The child had consistently maintained a wish to donate over a period of time and had resisted attempts by his parents to dissuade him from participating. Justice Hannon concluded that ‘the totality of the evidence in relation to his wishes leads me to conclude that significant weight should be attached to them’.⁷⁰

Justice Hannon accepted that the child understood the procedure was not ‘guaranteed’ to cure his aunt and that the child ‘would not consider himself responsible if his aunt were to die regardless of the transplant and that his grieving would be commensurate with the death of a close family member where the present circumstances did not exist’.⁷¹ In addition, the court considered the anticipated negative effect upon the child if authorization was refused. This factor was noted as overlapping with the critical factor of the relationship between the child and the intended recipient.⁷² It was stated that if the authorization was not given, the child ‘would be puzzled and confused at not being permitted to proceed as it would directly contradict his personal value of “helping”’.⁷³

On balance, Justice Hannon found that the psychological benefit to the child of donating outweighed the minimal risks and consequences of the procedure and he authorized the procedure as being in the child’s best interests.⁷⁴

The emphasis on the child’s understanding and wishes in this case is significant. It clearly articulates that even in the case of children who are not yet Gillick competent, their views will be considered seriously by the court. This approach seems correct – being one that is consistent with the increasing respect given to children’s rights to be involved and participate in decisions affecting their lives. Also significant, due to its absence from other similar cases, is that the court gave specific consideration to the fact that the proposed donor understood that it would not be his ‘fault’ if the procedure was unsuccessful and the recipient died. This would seem an important consideration in assessing whether psychological benefit or harm might be experienced by a donor child if a procedure is authorized.

In Re Inaya (Special Medical Procedure)

In Re Inaya,⁷⁵ an application was made for a 13-month old infant to act as a donor⁷⁶ for her 7-month old cousin. An independent children’s lawyer was appointed to represent the best interests of the child, and an amicus curiae was appointed to assist the court.⁷⁷

Before describing the procedure and risks in detail, Justice Cronin prefaced this by stating:

Aside from the risks associated with a general anaesthetic, the procedure of bone marrow harvest is “atraumatic” and not likely to have any long-term effects on Inaya.⁷⁸

The judgment then outlined the evidence about the bone marrow removal procedure itself; the main risks that were identified arose from the use of a general anaesthetic. Justice Cronin stated:

The risks posed by general anaesthetic are death, dental trauma and peripheral nerve injury. There is no specific data detailing the risk faced by a healthy 1 year old. The medical evidence about the risk of death for Inaya, were she to be given a general anaesthetic, would be significantly less than 1:67,000. I also accept the evidence that Inaya would face a 1: 10,000 risk of dental trauma and a 1: 10,000 risk of peripheral nerve injury. These are risks which parents consider and no doubt in most cases, take, every day of the week.

The short-term side effects that Inaya may suffer following the general anaesthetic are post-operative nausea and vomiting, sore throat, bruising at the site of intravenous cannulation and behaviour or sleep disturbance. ⁷⁹

Under the heading ‘The psychological impact on Inaya’, Justice Cronin, like the court in GWW, noted that the relationship between the proposed donor and intended recipient was ‘of particular importance’ to the psychological impact on the child.⁸⁰ Evidence from a clinical psychologist specializing in child and family psychology was quoted by the court in relation to the impact on the family and, as a consequence, on the child.⁸¹ However, it is not clear from the evidence that the psychologist adopted the same legal best interests test that focuses solely on the interests of the child. Justice Cronin’s judgment includes the following evidence from a psychologist that appears to show a more family-oriented relational view than that of the individually focused legal best interests test:

It is not just the impact on her, but the impact upon her as a member of a closely knit family unit, clearly driven by collective support that needs to be considered…[Inaya] should be allowed to be the donor for her cousin because this is the most likely intervention to save his life…[S]he should also be allowed to do so because as a member of this larger family unit, this is also what should be done. The implication is that even the youngest family members need to be considered and decisions made appropriately…⁸²

It is not clear whether the court accepted all the evidence of the psychologist, but it appeared to influence the court’s conclusions regarding psychological benefit and harm. By not articulating how it interpreted and applied the best interests test in this case, the court opens itself to the criticisms (of the best interests test) outlined in part 1.

Evidence was given from the child’s father regarding his concerns about the negative impact on his child if the application was not granted.⁸³ In this case, the fact that the families of the children were part of a close-knit community and were living together was significant. That the children would grow up ‘closely together’ was relevant, as Justice Cronin considered it to be in the interests of the child that their relationship be preserved if possible.⁸⁴ Justice Cronin stated:

Inaya may suffer psychological harm derived from guilt, self-blame and exposure to a traumatised and grief-stricken family and community, as well as the loss of important relationships if the procedure was not performed.⁸⁵

Orders were made authorizing the procedure and the parents to consent to the procedure.

While stressing the importance of the relationship between the intended donor and recipient, it is apparent that the court took the traditional concept of what might be considered a ‘close relationship’ further. In Re Inaya, while the families of the children were obviously close, the relevant children – aged 13 months and 7 months – would arguably be unable to meaningfully value their relationships at that stage.⁸⁶ Justice Cronin therefore relied on potential future benefit to a far greater degree than the court in GWW. Reliance on such speculative benefit when faced with certain physical harms and probable risks appears to stretch the notion of the best interests test.⁸⁷

It is also arguable that the court appeared to take into account expert evidence focusing on issues not relevant to the legal best interests test. The best interests test requires consideration of the proposed donor’s interests; the intended recipient’s and family’s interests are only relevant to the extent that they affect the benefits or harms experienced by the proposed child donor. However, the evidence quoted by the court in this case appears to consider the welfare of the child in a much more family-oriented manner; this is arguably at odds with the legal best interests test. If the court relied on this evidence, it would be relying on, to a much greater degree than in other cases, the notion of familial benefit, as well as individual benefit. I return to this point in part 3.

United States

In the United States, cases dealing with potential child donors occur at the State, rather than Federal, level and, as such, are only of precedential value in that State. Unlike in other countries, there is a history of cases where State courts have allowed organ transplants, including skin grafts (which could technically be termed regenerative⁸⁸), from children.⁸⁹ However, in the context of bone marrow or PBSCs donation, the most pertinent case comes from the Supreme Court of Illinois’ decision in Curran v. Bosze. ⁹⁰ It is suggested that where similar factual cases arose in other States, those courts would be likely to look at this case for guidance. Here, the court applied the best interests test – unconstrained by a statutory definition – in determining the issues in accordance with the common law.

In this case, the potential donors were twins aged three and a half. In this appeal case, the father of the children requested that both, or either, of the twins act as a donor for their half-brother, a 12-year-old boy with leukaemia with a different mother.⁹¹ A guardian ad litem was appointed for the twins and for the potential recipient in this case. The mother of the twins refused to provide consent to blood tests to determine compatibility and, in circumstances of compatibility, removal of tissue. The mother had a ‘parentage order’ granting her sole care, custody, control and educational responsibility for the children but which provided that all matters of importance relating to health and welfare required consultation with the father. The twins had briefly met their half-brother on two occasions.

The court identified three critical factors which it considered necessary for a determination to be made that it would be in the best interests of a child to donate bone marrow to another:

First, the parent who consents on behalf of the child must be informed of the risks and benefits inherent in the bone marrow harvesting procedure to the child.⁹²

Second, there must be emotional support available to the child from the person or persons who takes care of the child…[This] is important to ease the fears associated with such an unfamiliar procedure.

Third, there must be an existing, close relationship between the donor and recipient…

Only where there is an existing relationship between a healthy child and his or her ill sister or brother may a psychological benefit to the child from donating bone marrow to a sibling realistically be found to exist…[It] is the existing sibling relationship, as well as the potential for a continuing sibling relationship, which forms the context in which it may be determined that it will be in the best interests of the child to undergo a bone marrow harvesting procedure for a sibling.⁹³

The assessment of how psychological benefits can result is, in my opinion, correct; benefits can only ‘realistically’ accrue where an existing relationship is present.⁹⁴

The court went on to identify the relatively low risks involved in undergoing the procedure.⁹⁵ However, on the facts, given that two of the three critical factors could not be satisfied⁹⁶ – lack of support from the mother and the lack of a close relationship between the recipient and potential donors – the court found that it would not be in the best interests of the twins to undergo any testing or subsequent procedure for tissue removal.⁹⁷

The requirement to fulfil the three critical factors before the best interests test is satisfied means that this approach is narrower than the cases discussed above⁹⁸ but arguably provides greater certainty (and thus overcomes some of the criticisms outlined in part 1) than other donor children cases. This approach avoids the problems of identifying in each individual case what the relevant factors are in satisfying the best interests case in these difficult cases where there is no physical benefit to the proposed donor. It goes some way to identifying exactly how psychological benefit ought to be assessed by a court. However, some question the meaning of the term close relationship and the validity of the assumption underpinning the need for such a benefit, that is, that psychological benefit (rather than harm) will automatically flow to those in established relationships.⁹⁹ In addition, it is not clear what conditions need to be satisfied in order for a parent to provide sufficient ‘emotional support’.¹⁰⁰

The court’s apparent deference to the mother’s views has also been criticized;¹⁰¹ Dufault argues that in circumstances such as these – where the mother is not related to the intended tissue recipient – the court ought to be ‘sensitive’ to the fact that a parent’s reasoning may be clouded and ought to decide the question of best interests itself.¹⁰²

The court also offered no guidance as to how it would make a decision where both parents share care and responsibility of the children but disagree as to whether the children should be used as tissue donors. The question remains whether one parent’s consent would be legally sufficient in those circumstances.¹⁰³

In addition, disappointingly, the court failed to engage with the importance or relevance of allowing the twins to participate to the extent possible. Unlike GWW’s case, the court did not mention the issue of the potential donors’ understanding, nor discuss any attempts that were made to allow the children to participate. While the children in Curran’s case were very young, it is suggested that some steps could still have been taken by the court to determine whether the children had participated in any way.¹⁰⁴ This would at least show the court’s concern for the children as key participants, if not decision-makers, in this context and demonstrate a respect for children’s rights to participate as envisaged by the Convention (although it is noted that the United States remains one of the few countries which has not ratified the Convention).

England

In England, no reported cases of applications for a child to act as a donor exist. Instead, guidance comes from a comparable case, Re Y ¹⁰⁵ (decided before the introduction of the Mental Capacity Act 2005), where an incompetent adult was the potential donor. There, the court applied the same best interests test that would apply if an application for an non-Gillick competent child came before a court.¹⁰⁶ However, while commentators suggest that this case has relevance for children who are proposed as regenerative tissue donors,¹⁰⁷ it is recognized that the relational differences are quite significant.¹⁰⁸ A young child’s relationship with their sick relative – usually a sibling – is very different from where there is a long-standing relationship between an adult lacking capacity to make the decision to donate and their adult sibling. In the latter case, the recipient may have a supportive role in helping the adult make decisions or assist them in other ways – something that is unlikely to be present between child siblings. The dynamic between parents of children and parents of adults who lack capacity is also different.

Y, a 36-year-old female, was severely mentally and physically handicapped and communicated mainly through signing. The court accepted that Y did not understand that her sister (the recipient) was ill or anything about the proposed procedure. The Official Solicitor was appointed as her guardian ad litem.

The court stated:

The test to be applied in a case such as this is to ask whether the evidence shows that it is in the best interests of [Y] for such procedures to take place. The fact that such a process would obviously benefit the [recipient] is not relevant unless, as a result of [Y] helping the [recipient] in that way, the best interests of [Y] are served.¹⁰⁹

While the court purported to use the same legal test, it adopted ‘a rather convoluted chain of reasoning’¹¹⁰ and was less explicit about the factors that led to its conclusion that the best interests test had been satisfied.¹¹¹ Y’s relationships with others in her family were clearly an important factor in the court arriving at its decision.¹¹² However, the court did not rely on the nature of the relationship between Y and the recipient; rather it relied on the effect the loss of the recipient would have on the relationship between Y and her mother. The court found that it was ‘not possible accurately to describe the relationship between [Y and the recipient] as particularly strong’.¹¹³ However, the relationship between Y and her mother was ‘noticeably close’ with ‘overt signs of affection’ by Y towards her mother.¹¹⁴ With the recipient’s death, Y would have less contact with her mother and, as such, be ‘harmed’.¹¹⁵

Justice Connell stated:

If the [recipient] dies, this is bound to have an adverse affect upon her mother who already suffers from significant ill-health…her ability to visit [Y] would be handicapped significantly, not only by a likely deterioration in her health, but also by the need which would then arise for her to look after her only grandchild…

In this situation, [Y] would clearly be harmed by the reduction in or loss of contact to her mother. Accordingly it is to the benefit of [Y] that she should act as a donor to her sister, because in this way her positive relationship with her mother is most likely to be prolonged. Further, if the transplant occurs, this is likely to improve [Y’s]…relationship with her mother who in her heart clearly wishes it to take place and also to improve her relationship with the [recipient] who will be eternally grateful to her. ¹¹⁶

Justice Connell weighed the social and psychological benefit in prolonging her ‘positive relationship with her mother’ against the ‘very small’ disadvantages to Y of undergoing the low risk procedure.¹¹⁷ The court clearly relied on the indirect effect of the loss of the recipient’s life to justify the best interests test. The court concluded that it was of ‘emotional, psychological and social benefit’ to Y to donate.

The court also quoted extensively from the US case of Curran v. Bosze ¹¹⁸ but did not make explicit which, if any, aspects of the case it agreed with in coming to its conclusion.¹¹⁹

Re Y has been criticized on a number of fronts. Some criticism correctly targets the apparent weak evidence relied upon by the court.¹²⁰ The evidence of psychological benefit (of proceeding) and psychological harm (of not proceeding) was not ‘particularly strong’ and not given by a person with appropriate expertise.¹²¹ The discussion of potential ‘risks’ to Y was inadequate and confusing.¹²² Also, absent is the consideration of what, if any, emotional support would be provided to Y in undergoing any procedure.¹²³ Most concerning is the lack of any close relationship between the donor and recipient. The reliance on an associated relationship results in a much broader conceptualization of best interests than recognized in other cases.¹²⁴ This broader conceptualization, relying on indirect social benefit, makes it far easier to justify donation by young children. Despite the stated reliance on the best interests test, some consider that the court, in not following the conditions in Curran v. Bosze, allowed itself to take into account the needs of third parties (i.e. Y’s mother and sister) in finding a psychological benefit to Y.¹²⁵

Summary of relevant cases

This section has discussed cases that applied the best interests test in cases where children (or a vulnerable adult) were proposed as a potential donor of bone marrow or PBSCs. In all the cases, independent representatives – tasked with determining the proposed donor’s best interests – were appointed for the individuals.

While no uniform approach can be distilled, what is clearly important is an intimate relationship between the donor and the recipient (despite the reasoning in Re Y), the support of parents to the child acting as a donor and an analysis of the risks and benefits in going ahead or not going ahead with the donation. While only explicitly addressed in Re GWW, in today’s climate of increased recognition of children’s rights to participation, I would suggest that the wishes of the child where the child is able to express those views would also be crucial to a court today.

The cases discussed in this part are important in putting these children in the limelight and will inevitably be used as a reference point for medical practitioners, parents and lawyers in the future.

Part 3 draws upon these cases to assess the appropriateness of the courts’ application of the best interests standard in child donation cases.

Part 3: Issues in the courts

The best interests test: Alternatives, appropriateness and application

Where cases involving child donors do come before the courts, their rarity means that courts need to be especially careful to provide clear judgments and good guidance for the future. This, however, has not always been the case. It is suggested that greater attention to a number of issues would result in increased clarity, confidence and, importantly, a better process for child donors.

Despite the criticisms, I do not recommend replacing the current best interests test with another standard. As a social institution that is viewed as legitimate by the majority of society in independently applying law to fairly make decisions, the court is best placed to be able to apply this test that focuses on the individual child.¹²⁶ Unlike parents – for whom the application of the best interests test may be impossible – an ostensibly impartial judge should be able to appropriately use this test.

Rejecting alternative tests

One alternative legal standard that has garnered some support is the test of ‘parental reasonableness’ where a court assesses the ‘reasonableness’ of parental decision-making.¹²⁷ However, this moves the focus away from the donor child to an assessment of the parents. It is essential that the child remains the primary focus, especially in child donor cases where so much attention can be given to the interests of the sick recipient. In addition, how a court would assess the reasonableness of a parental decision is arguably just as vague and seemingly plagued by the same uncertainties as a determination of a child’s best interests.¹²⁸ It would also be inconsistent with the Convention’s identification of the use of the best interests test as the appropriate approach.

Another alternative, singular in its legal application, is the standard that the intervention should be allowed unless it would be ‘against the child’s interests’.¹²⁹ While some argue that this approach is more consistent with what happens in reality, the lack of judicial uptake and support for this approach has left the meaning of the test unarticulated and uncertain.¹³⁰ To refocus the attention from a procedure resulting in a net ‘benefit’ to the child (the best interests test) to one that focuses on ‘harm’ to a child (against the child’s interests) is significant. The threshold of the second test is arguably lower and will be wholly dependent on how the term ‘child’s interests’ are interpreted by the courts. This test also moves to a position where a presumption almost appears to exist in favour of allowing a child to act as a donor – unless a reason can be found for it to be ‘against the child’s interests’. As such, to replace one test with another lacking in any judicial consideration, of uncertain meaning and which lowers the threshold of when children can act as donors, seems ill-advised.¹³¹ To do so would appear to diminish the focus on the donor child’s individual rights in the most controversial cases that appear before the courts.

Others have suggested that the substituted judgement approach ought to be adopted.¹³² The primary criticism of this approach is well articulated in the literature and relates to the difficulty in anticipating how a particular individual would make a decision, where that individual has never had capacity.¹³³ As recognized in Curran v. Bosze,¹³⁴ applying the test to children too young to express any view is illogical – how could the court as the surrogate ‘profess to know what decision that individual would make’?¹³⁵

Appropriateness of the current legal best interests test

The best interests test is essentially paternalistic, but its application in this context is appropriate if the court properly considers psychological benefit and harm, a child’s right to participate and have their views taken into account, and clearly articulates how it considers the test has been satisfied. The rationale for this view will now be explained.

In child donor situations, the concern is often that the rights and interests of the donor child will be forgotten in light of the plight of the sick relative – most often a sick sibling. Indeed, this is one of the reasons that the application of the best interests standard by parents is unreasonable – it being near impossible to divorce the concern of a sick child from that of a well child. However, the best interests test, when properly applied by an independent court, deals with this concern most effectively. A fundamental requirement of this test is that the focus remains solely on the benefits to the child in question. The well-being or otherwise of the recipient should only be relevant to the extent it impacts on the interests and well-being of the donor child.

In addition, the increasing importance of children’s rights post-Convention is something that can be recognized and accommodated within the best interests standard. The right of a child to participate ought to be recognized and any views expressed by a child are now considered an essential and potentially weighty factor for a court to consider in applying the legal test. The Committee on the Rights of the Child have emphasized that Articles 3 (the child’s best interests) and 12 (the right of the child to be heard) are inextricably linked:¹³⁶

There is no tension between Articles 3 and 12, only a complementary role of the two general principles: one establishes the objective of achieving the best interests of the child and the other provides the methodology for reaching the goal of hearing…the child. In fact there can be no correct application of Article 3 if the components of Article 12 are not respected.¹³⁷

Such an interpretation of the best interests standard is consistent with commentators, such as Eekelaar, who have reconciled the two approaches through the adoption of the concept of ‘dynamic self-determinism’.¹³⁸ This recognizes that it is in a child’s best interests for the outcome to be ‘at least partly, determined by the child’ and that a measure of flexibility ought to be retained as the best course for a child may not always be able to be determined at the time of the decision.¹³⁹

Courts should be very clear that a significant factor will be the authentic views of the child where a child is able to express such views. As noted by Robbennolt, ‘protecting the minor’s ability to decide is likely to advance the minor’s best interests’.¹⁴⁰ This, of course, requires an assessment to ensure that the child has not been coerced. If courts adopt this approach, conflict between the best interests test and the emerging autonomy of the child may be less likely to arise. This is because the application of the best interests test for children able to express a genuine view would, in the majority of cases, be likely to result in a decision respecting their views.¹⁴¹ This is, of course, not guaranteed, but there would presumably need to be evidence of significant factors going against the genuinely expressed wish of even a young child for a court to make a finding against their wishes.¹⁴²

While in the past, some commentators suggested that the best interests test would prevent a court taking into account altruism or compassion by a child,¹⁴³ Re GWW shows that its application today does allow a child’s stated wish to be altruistic and compassionate for the sake of another, to be taken into account.¹⁴⁴ Baron has suggested that the ‘use of the minor’s stated desire to participate as evidence of his best interests presents serious problems’.¹⁴⁵ However, I disagree: courts are trained to weigh up evidence provided to them, and as long as sufficient safeguards and inquiries are made to ascertain the genuine nature of a child’s views, I fail to see the problem in a court taking such expressed wishes into account. Indeed, the court in GWW showed how it is possible to do so.¹⁴⁶ Family courts in particular already attribute differing weight to the expressed wishes of children subject to a court application – depending on the child’s maturity and understanding – and this is the correct approach. Indeed, taking into account a child’s views subject to their maturity is a legislated requirement for some family law proceedings (e.g. court determinations of residence/contact arrangements following parental separation) and also required under Article 12.¹⁴⁷ Where the child is younger but still able to express a view in favour of donating, independent evidence of benefit should also be needed, for example, by demonstrating social or psychological benefit on the basis of close relationships.¹⁴⁸

What may provide a practical impediment to this approach is that courts – who rarely take evidence directly from children – may end up relying on reports from others who are asked to assess and ascertain the views of children (e.g. child psychologists acting as experts or family consultants). As discussed later, reliance on expert evidence presents its own set of challenges. However, regardless of these challenges, it does not nullify the principle that courts should take children’s views into account in applying the best interests test.

In cases where a young child is capable of expressing a view and expresses genuine objection, prior to or during a court application, the court should not authorize the removal of tissue. However, despite the view of some,¹⁴⁹ I do not believe courts should take an objection at face value. Courts should attempt to distinguish ‘childish fears’ or reluctance (which it is acknowledged may be difficult to determine)¹⁵⁰ from true objections and ought to be aware that for some children, their objection may be given for reasons other than an actual opposition to undergoing the procedure to help a family member. In such cases, sometimes the issue can be managed in such a way to allow the child’s true desire – to help their family member – be realized.¹⁵¹ Obviously, the more understanding shown by the child, the more weight should be given to their objection. And, where such objection is consistently expressed, a child’s wishes not to participate ought to be respected.

Where a child is unable to express a view due to their young age, the court must look to the other factors (i.e. evidence as to the nature of the relationship between the proposed donor and recipient such as whether they live together, how often they see each other, etc.) in deciding whether the best interests test is satisfied.

Current problems in applying the legal best interest tests

Despite my view that the current best interests test is more appropriate and adaptable than other standards, problems undoubtedly remain in the courts’ application of the test in child donor cases. Highlighted here are some concerns I have regarding the judicial application of the test.

The inherent problem of the legal best interests test is how one determines its scope and what should and should not be taken into account in assessing whether it is satisfied. The unique circumstances of child donation – where a child undergoes a non-therapeutic procedure – makes the best interests test particularly difficult to apply. Mumford aptly states the concern:

[a]pplied strictly, it prohibits any kind of non-therapeutic medical intervention, for it cannot be said to be in the interests of an incompetent person to be subjected to the physical or psychological discomfort associated with bone marrow donation. A wide interpretation of the best interests test runs the opposite risk: the test may be stretched or manipulated in order to achieve the results desired. In the guise of the welfare test, risks may be taken with the health of those we should be protecting.¹⁵²

These points regarding the best interests test are, generally, true. The attractiveness of the test – its flexibility in being able to take a range of diverse factors into account – is also one of its greatest flaws. The lack of clarity by the courts in stating how the best interests test is satisfied in these types of cases has only added to doubts over the adequacy of the test in this context.

What is clear from all the cases is that the best interests test in this context will only be satisfied on the basis of psychological, and possibly subsequent social, benefit likely to be experienced by the donor child.¹⁵³ Clearly, there is no physical benefit in undergoing the tissue removal procedure. The courts have at times struggled to make a convincing case that the test has been satisfied. As already discussed above, where the child is able to express a view as to his or her participation as a donor, the court applying the best interests standard should take this into account. Other common criticisms relate to the question of how to assess such benefit and the arguably speculative nature of perceived benefits.

First, where a court must rely on psychological benefit to satisfy the best interests test, Korins notes that ‘the purely objective analysis of the best interest standard frequently breaks down due to the inherent subjectivity of all but the most rudimentary psychological evaluations’.¹⁵⁴ This would appear to be particularly true for tissue donation cases as the empirical evidence of psychological benefit to the donor is, at best, inconclusive.¹⁵⁵ While expert evidence given by psychologists may bolster the evidence of psychological benefit, the courts’ reliance on such expert testimony is not without concern in some cases.¹⁵⁶ This does not mean that the potential for psychological benefit cannot be taken into account, but as discussed below, the use of expert testimony in these cases brings an apparent scientific certainty to some cases which the court seems, rather dubiously, to be happy to rely upon to found their conclusions.¹⁵⁷ Relevant to this point is my twofold criticism of Re Inaya; in relying on speculative evidence and assuming that two infants of 7 and 13 months would have a close relationship in the future, Justice Cronin stretched the concept of best interests by moving the focus from actual or imminent benefit to include hypothetical relationship benefits that may result far into the future.¹⁵⁸ Justice Cronin also appeared to take into account evidence from a psychologist that took into account wider familial interests than is normally acceptable in the child-centred best interests test. To avoid courts being subject to these types of criticisms, more clarity and transparency of reasoning is required in terms of how the court assesses and is satisfied that psychological benefit will accrue to the child in each case.

Second, the courts have also been unclear as to what psychological effect on the potential child is being examined. While the Australian and English cases seem to consider the psychological effects of donating compared with not donating and weigh this against the risks and harms of going ahead with the donation, many unanswered questions as to the nature of the benefit remain. Does the psychological benefit of donating take into account that the transplant might fail? Is it that the psychological harm suffered if the recipient was to die would be greater if the child did not donate rather than donate? Is the degree of psychological benefit considered directly proportional to the closeness of the relationship between the donor child and the recipient? Greater clarity regarding the questions the courts ought to consider is needed both for judges dealing with similar matters and also for those who intend to approach courts in the future.

Third, there has been a lack of explicit consideration of certain factors that seem important in considering psychological effect on child donors. In some cases, courts appear to almost assume the recipient’s survival;¹⁵⁹ this assumption lends itself to a finding of benefit, despite the fact that recipient survival is by no means guaranteed. More common has been the assumption that if the recipient survives, this will automatically benefit the donor.¹⁶⁰ While in the vast majority of cases this seems likely, this may not hold for every case of child donation.¹⁶¹

We lack empirical evidence about consequences for donors following transplant; no studies have provided sufficient evidence that the majority of child donors psychologically benefit from acting as donors.¹⁶² Research does show that the donor–recipient relationship can deeply affect seemingly ordinary sibling or other family relationships.¹⁶³ Extrapolating from adult studies, Cheyette notes:

If a donor was at all ambivalent about donating, the recipient may forever hold it against him despite the fact the he ultimately came through. The recipient’s…guilt from having needed so great a sacrifice from the donor can also create an unbridgeable gap between the two family members. (references omitted)¹⁶⁴

This is a concern echoed by Goodwin who suggests that ‘the potential for further conflicts with their siblings’ is ‘undervalued’ and ‘less contemplated’.¹⁶⁵ The assumption of benefit made by courts (often in the absence of consideration of the (limited) empirical evidence regarding psychological outcomes or without testimony from former child donors¹⁶⁶) means that there is a predisposition to the best interests test being satisfied.¹⁶⁷ Arguably a more transparent approach would be to acknowledge the possibility of negative outcomes – not something that cases currently contemplate – but look at the weight of evidence that demonstrates the likelihood of benefit if the recipient survives.

There has also been a tendency, when judges assess psychological effect, to not consider the effect on the donor if the transplant fails.¹⁶⁸ The notable exception was Justice Hannon in GWW’s case. Depending on the condition of the recipient, statistically the chances of failure can be quite high, with side effects like graft versus host disease being common. If a recipient were to suffer severe complications or even die following transplant, it is a known phenomenon – recognized in the literature – for donors to potentially feel guilt or responsibility for such an outcome.¹⁶⁹ Such a psychological burden experienced by donors is not usually taken into account by courts when balancing the pros and cons of undergoing a procedure. For an accurate application of the test, courts would, at the very least, have to weigh these risks of psychological harm along with the physical risks of undertaking the procedure. Justice Hannon in GWW’s case at least recognized this possibility and received evidence that the child understood that if the transplant was to fail, it would not be his fault.¹⁷⁰ Others appear to have not considered this when applying the best interests test.¹⁷¹

These psychological risks can presumably be ameliorated through emotional support (as recognized in Curran’s case), sufficient age appropriate information given to the donor both before and after the transplant and appropriate medical and psychological support where necessary. However, with the exception of Curran’s partial recognition of these steps, this is not something courts have explicitly considered or recommended for a child donor.¹⁷²

Fourth, the time period in which the child donor must experience a psychological benefit has not been well articulated by courts. Grubb, in discussing Re Y,¹⁷³ suggested that:

[T]he court will look for immediate psychological benefit and would reject as too tenuous evidence of the long-term future benefit of not ‘living in a family under the shadow of avoidable, premature death’.¹⁷⁴

However, this seems at odds with Re Inaya, where Justice Cronin looked at the long-term potential benefit of the infant donor.¹⁷⁵ Undoubtedly, the further the psychological benefits are predicted into the future, the more speculative and less reliable the psychological evidence appears. However, a balance needs to be sought here as not taking into account more than immediate benefits would see young children completely ruled out as donors, and this seems too restrictive.¹⁷⁶

Some guidance could be sought in addressing these four criticisms from the approach suggested by the Committee on the Rights of the Child in their General Comment on Article 3.¹⁷⁷ There they note that assessing and determining the best interests of the child for every specific decision involves, concretely identifying the relevant elements in the best interests assessment – of which the child’s views will be one – and assigning weight to each one. It also requires following a process with legal safeguards to determine the child’s best interests that includes the right of the child to be heard, the use of qualified professionals and the child accessing appropriate legal representation (a point returned to below). ¹⁷⁸

Reliance on expert evidence

A further concern linked to the issues identified above has been the courts’ willingness to unquestionably rely on expert evidence in child donor cases. Since child donation cases first appeared in courts in the United States in the latter half of the 20th century, commentators have criticized the courts’ reliance on expert evidence.¹⁷⁹

While the courts’ acceptance of medical evidence regarding the procedure and risks is less problematic (assuming the information given to be evidence-based), a number of concerning issues arise in the court’s unquestioning reliance on expert psychological evidence in child donor cases. While psychologists, or sometimes psychiatrists, are asked to assess a donor child’s capacity, they usually also give evidence regarding psychological benefit or harm to a donor child that contributes to the court’s assessment of best interests. It is this second task that can be problematic.¹⁸⁰

In Australia, England and the United States, expert evidence may come before a relevant court in a number of ways. Whether the evidence is commissioned by the parties themselves, brought at the direction of the court or a court appointed representative of the child, it is likely to be influential on the decision made by the court.¹⁸¹

While evidence of psychological benefit or harm may inferentially be provided by a number of non-expert witnesses (i.e. relatives or carers), expert evidence arguably carries more weight as there exists the veneer of objective scientific certainty that may not be attributable to other non-expert witnesses. Jacobs notes that:

the use of experts fosters societal trust in courts in general, and the acceptability and acceptance of a court’s particular decision. Aside from giving an illusion of infallibility, reliance on experts underemphasizes the risks of errors of judgments.¹⁸²

One problem that arises in accepting evidence from a single psychologist expert (which seems common in some jurisdictions) is that such testimony, due to its seemingly objective nature, may be accepted as ‘fact’ without scrutiny. Despite the fact that all experts can be cross-examined, there is little evidence that this occurs in child donation cases where no dispute exists between parties as no contradictor may be present.¹⁸³ The very nature of such expert evidence is that, inevitably, the psychological consequences of undergoing or not undergoing a procedure will be open to interpretation.¹⁸⁴ Guidance has been developed in the context of psychological evidence given in divorce proceedings in the United States which state that: ‘Psychologists are encouraged to monitor their own values, perceptions and reactions actively and to seek peer consultation in the face of a potential loss of impartiality’.¹⁸⁵ This explicitly recognizes that even expert witnesses are not immune from providing advice that is swayed by their own values and experiences. The use of children as donors is a value-laden topic with differences of opinions common due to conflicting concepts of what is ‘right’ and ‘wrong’ in a given situation. It therefore seems likely that similarly trained experts may have differing views in the same set of difficult circumstances¹⁸⁶ (although, this is admittedly a conclusion that may be made of different members of the judiciary as well).¹⁸⁷

It is also apparent that in providing evidence about benefit to the child, some experts have strayed beyond focusing on the donor child and given evidence about the family as a whole. For example, in the Australian case of Re Inaya, Justice Cronin quoted the clinical psychologist’s evidence which contained statements that appeared to focus on the donor in the context of familial benefit – at odds with the focus on individual benefit required for satisfaction of the legal best interests test.¹⁸⁸ An unanswered question for this and other cases is whether the expert intended the court to use their evidence in such a way. The apparent reliance on such evidence in cases like Re Inaya raises questions about how courts are applying the best interests test.

Use of such evidence can also lead to suggestions, like that of Jacob, who states that the judiciary might wish to look for a ‘scapegoat’, thus avoiding responsibility.¹⁸⁹ Unlike Jacob, I am not so cynical as to suggest that expert evidence is so contrived.¹⁹⁰ I do not believe that such evidence is used in courts to ‘confirm the resolution otherwise achieved, in ethical and legal dilemmas’,¹⁹¹ that is, that children should donate to a family member. To do so would be to question more broadly the judiciary’s adherence to legal principle as the means of resolving difficult issues before the courts.¹⁹² Medical decisions in particularly have always posed challenges for the court (i.e. withholding and withdrawing life-sustaining treatment from children; separation of conjoined twins; elective sterilizations of children with disabilities, to name but a few). While these judgments are open to criticism on a number of bases, I believe there is evidence of a weighing of factors and consideration and application of legal principle in all of the cases discussed in this article.

However, the cases do demonstrate that judges are heavily influenced by such testimony and rarely question the evidence,¹⁹³ even when the evidence given is not consistent with the legal test purportedly applied (as was the case in Re Inaya). This gives the appearance of unquestioning acceptance of such evidence, even when this may not in reality be what the courts are doing. This may in part be because courts are more comfortable making orders that are consistent with a consensus that has been reached between all parties (e.g. family members and health professionals) regarding what should occur.¹⁹⁴

In order to bolster confidence in the courts in these matters, first, experts ought to be required to more transparently outline their reasons when asked to make assessments of best interests of the child.¹⁹⁵ Second, courts should outline more clearly what weight is given to the evidence and how that evidence influenced the court’s decision.¹⁹⁶ Testimony that did not address the test appropriately or which did not provide convincing reasons for the conclusions reached could then be expressly given less weight by a court and vice versa for well-founded expert testimony. This would also avoid the perception that expert testimony in relation to a child experiencing psychological benefit was being accepted as an undisputed ‘fact’ rather than simply the opinion of an expert.¹⁹⁷

Representation of children

The representation of children (or lack thereof) in court cases involving potential child donors is another issue of concern.¹⁹⁸ Research shows that in family law proceedings, children can often feel marginalized and consider themselves not given a sufficient voice during proceedings affecting them.¹⁹⁹ The way children, and their views, are presented in courts is another depiction of how much the law respects their autonomy and right to participate. For countries who are party to the Convention, Article 12(2) is clear that ‘the child shall…be provided the opportunity to be heard in any judicial…proceedings affecting the child, either directly, or through a representative…’.

Given that children will rarely give direct evidence to the court as a witness,²⁰⁰ how they are represented is crucial to the court discovering their views.²⁰¹ Normally, non-Gillick competent children in these cases are not directly represented in proceedings and instead a best interests model of advocacy is used.²⁰² In Australia, if the matter is before the Federal Family Court, an Independent Children’s Lawyer may be appointed²⁰³ or, if the matter comes before a Supreme Court, a litigation guardian/tutor may be appointed.²⁰⁴ In England and Wales, a Children’s Guardian may be appointed and they will instruct legal representation on behalf of the child based on the Children’s Guardian’s view of the best interests of the child (rarely, a child may have independent legal representation who takes instructions directly from the child).²⁰⁵ In the United States, a court is likely to appoint a guardian ad litum for a child.²⁰⁶ These forms of representation for children – which provide for the appointment of separate legal representation for a child (e.g. Independent Children’s Lawyer) and/or the appointment of those with non-legal social work skills (e.g. Children’s Guardian)²⁰⁷ – require an appointed person to independently form a view as to the child’s best interests.

These appointments are often made at the discretion of the court and do not reflect a direct representation model. Best interests approaches like this have been criticized; Baron suggests that where such a lawyer is appointed, he or she:

will make decisions based solely on his own investigations. If, for example, the [lawyer] decides that the donor is likely to benefit, he will decide this question without the aid of adversary development of the evidence. Because of this predetermination, the [lawyer] may not present the court with arguments and evidence that suggest that the [child] might not benefit.²⁰⁸

There is evidence that appointed persons do not always directly engage with children; this can lead to children experiencing disappointment and distress.²⁰⁹ Keough also notes that his experience in the Australian family law context is that ‘many child representatives discount, editorialize or reject the child’s wishes, and argue the case in accordance with his or her own views of the child’s best interests’.²¹⁰ The need for those appointed to faithfully and competently fulfil their role is crucial if children in proceedings are to benefit.²¹¹ While it is true that the court will consider all the evidence, the views of such a lawyer, appointed to represent a child, will inevitably be influential.²¹²

Another model, rare in its application, is the direct representation model. Where used, this would see the lawyer advocate for the wishes of the child.²¹³ While this may not be useful for many young child donor applications, there will be some cases where a potential donor child may benefit from direct representation. This may be particularly so where there is a question as to a child’s competence or where a child holds particularly strong views and wants such representation.²¹⁴

In light of Article 12 of the Convention, various sensible suggestions have been made regarding how processes in judicial proceedings involving children might generally be improved to further respect the participatory rights of children. These might suitably be adapted to apply in the relevant courts. For example, children would benefit from: receiving age appropriate explanations of what is happening in court (including justification and explanation of the decision itself); being provided with options regarding how they can communicate their views about the case; being informed about how their views will be used; and access to qualified child focused professionals for assessment processes.²¹⁵ Furthermore, more globally, moves toward a model that allows for children to be present in proceedings and directly meet with the judge deciding their case (if they wish) would provide more of a guarantee for children the subject of these hearings to participate in the decision.²¹⁶

Conclusion

Young children acting as tissue donors continues to be a vexed issue. While accepted medical practice, this unique situation of a child undergoing a non-therapeutic procedure for the benefit of another does not sit comfortably within the established legal or ethical frameworks governing decision-making on behalf of children. The cases examined in this article demonstrate how courts from different jurisdictions have, at times, struggled to convincingly apply the best interests standard. Given that the most difficult and controversial cases are likely to come before the courts, where the danger of exploitation of a young donor child may be the greatest, it is important for courts to clearly articulate their reasoning in applying this test. However, this has not always occurred. Questions remain about what factors are relevant in assessing a child’s proposed participation as a donor, how those factors are assessed and weighed and how expert evidence ought to be used in this context.

Despite the approach of the courts in some of these cases being open to criticism, I have argued that the best interests test remains the most appropriate legal test to be applied by courts in cases where a non-Gillick competent child is proposed as a donor of bone marrow or PBSC.

However, child donors who appear before a court would be better served if courts took steps to better articulate their reasoning and allow greater participation by the potential donor child. Ways in which this can be achieved would be to provide greater clarity regarding how the best interests test is satisfied in each case and better explain the relationship between expert evidence (in relation to psychological benefit/detriment) and the satisfaction of the best interests test. In relation to participation by child donors in court proceedings, the search for better ways for a child to be represented and have his or her genuine views presented to the court must continue.

When such cases come before the courts, we owe it to potential donor children – even young children – to listen to their views and help them understand the decision made about whether they act as a donor.

Footnotes

Acknowledgement

The author would like to thank Prof. Terry Carney, Prof. Belinda Bennett and Prof. Judy Cashmore for reviewing earlier drafts and Tony McCarthy for research assistance provided.

Declaration of Conflicting Interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author received no financial support for the research, authorship, and/or publication of this article.