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1 Introduction

Consider the case of a young child with newly diagnosed leukemia. The treating pediatric oncologist explains to the parents that once the child is in remission, it is in her medical best interest to undergo a hematopoietic stem cell [HSC] transplant. Depending on the disease and other clinical factors, the options may include one or more of the following: autologous HSC transplant (where donor and recipient are the same person); bone marrow or peripheral stem cells from an unknown source or family member; or umbilical cord stem cells (obtained from either the child’s own cord blood procured postnatally, a sibling or an unknown source) (Khandelwal et al. 2017). Depending on the medical condition, there are pros and cons for the donor to be the patient him- or herself versus a sibling versus an unknown source and for the source of the stem cells to be bone marrow versus peripheral blood versus umbilical cord blood (Talano et al. 2014; Styczynski et al. 2012; Khandelwal et al. 2017). Within the family, siblings are the most likely to be histocompatible (match at 10 of 10 human lymphocyte antigens [10/10 HLA-match]), and a sibling donor often facilitates the logistical issues.

In this chapter, I will explore the ethical issues surrounding decision-making regarding allogeneic HSC donation by a minor (non-infant) to his or her sibling. I focus on the sibling donor for several reasons. First, although the most common HSC transplants in the US involve an autologous donation (~57%) or a non-related donor (~22%), siblings are the most likely related donor because they are more likely to be an HLA-match than other genetically related family members (Center for International Blood and Marrow Transplant Research n.d.), In the US, siblings account for ~10% of all donors (Center for International Blood and Marrow Transplant Research n.d.); Second, almost 20% of related donors are minors (Center for International Blood and Marrow Transplant Research n.d.) which raises important moral questions regarding parental authority, the moral underpinnings of their decision-making, and the role of the minor. To examine these moral questions, I explore a framework for decision making in pediatrics as outlined by Buchanan and Brock (1990). I then examine whether the parents must be guided by the “best interest” standard and what this means for both the child donor and recipient, and I discuss why Brock and Buchanan are correct to argue for third-party intervention for HSC transplantation when the potential donor is a minor sibling. Finally, I describe the recommendations we developed for the American Academy of Pediatrics [AAP] Committee on Bioethics statement (2010) “Children as Hematopoietic Stem Cell Donors” which provides the sort of oversight that Buchanan and Brock proposed. I show that the AAP recommendations are supported by data from the medical literature as well as interview quotations from the qualitative empirical study on bone marrow transplantation between siblings that was conducted from 2016 to 2019 by members of the Institute of History of Medicine and Science Studies, University of Lübeck (PIs: Madeleine Herzog, Martina Jürgensen, Christoph Rehmann-Sutter and Christina Schües) [Hereinafter referred to as “the Lübeck study”], and the citations are sourced from the Interview Material [IM] which can be found in the appendix.

2 Pediatric Decision Making

In Deciding for Others: The ethics of surrogate decision making, Buchanan and Brock (1990) offer a four principle framework for surrogate decision making for pediatric and adult patients. The four principles are: (1) underlying ethical values; (2) authority principle; (3) guidance principle and (4) intervention principle.

Buchanan and Brock state that the underlying ethical values (principle #1) for decision-making for those who cannot make decisions for themselves include both well-being and self-determination. When the patient is a child, they add parental interests as a third underlying value. They offer four justifications for adding this third value: (1) the child is unable to speak for him- or her-self, and parents will do a better job than others; (2) parents will bear the consequences; (3) parents, within limits, have the right to raise their child according to their own values; and (4) the family is a valuable social institution that promotes intimacy which requires, “within limits, to make important decisions about the welfare of its incompetent members” (Buchanan and Brock 1990, pp. 233–4).

The framework also establishes who is (are) the appropriate authority figure(s) (principle #2) and what principle(s) should guide them (principle #3). Adults who have decisional capacity can choose who will speak for them if and when they are no longer able, and their decision-makers should make decisions, when possible, that they would have made if they were still capable (either by following an advance directive or applying the principle of substituted judgement) (Buchanan and Brock 1990, p. 94). In contrast, in pediatrics, parents are the presumed decision-makers, and they are supposed to be guided by the best interest standard (Buchanan and Brock 1990, pp. 232–7).

The most obvious reason to intervene in a surrogate’s decision making (principle #4) is because the surrogate’s decision is abusive or neglectful—what is referred to as the “harm principle” (Diekema 2004, 2011). While decisions or actions that meet the criteria of abuse or neglect justify state intervention, Brock and Buchanan propose intervention for a broader array of cases and sanction a broader set of agents or institutions to intervene. According to Brock and Buchanan, third-party intervention can be justified in three sets of cases for both children and adults: (1) conditions that disqualify the family (e.g., abuse and neglect, conflicts of interest, or if the family “is incompetent to decide”); (2) cases deserving special scrutiny (e.g., the vulnerable position of the incompetent patient; the momentousness of the decision; or high likelihood of conflicts of interest); or 3) cases outside the scope of reasonable medical practice (e.g., parents who demand treatment that is not medically indicated or parents who refuse treatment that has high benefit and low harm) (Buchanan and Brock 1990, pp. 142–151). Buchanan and Brock also sanction other agents or institutions, such as ethics committees, to intervene (Buchanan and Brock 1990, pp. 148–151). (This decision-making framework and how it is similar and different for minors and adults who lack decisional capacity are detailed in Table 12.1).

Table 12.1 The primary ethical framework developed by Buchanan and Brock (1990) in Deciding for Othersa
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One of the cases in which Buchanan and Brock support third-party intervention is in the case of a child sibling HSC donor (Buchanan and Brock 1990, p. 142). They support third party intervention because the parents are conflicted: while it is best for the ill child to undergo an allogeneic HSC transplant from a 10/10 HLA-matched sibling, it is not clear that it is in the healthy sibling’s best interest to serve as an HSC donor. In the 30 years since the publication of their book, the medical and psychological risks experienced by HSC donors have been further characterized by empirical research. First, there are medical risks regardless of the source of the stem cells. Bone marrow donation is painful, requires anesthesia, and may lead to nerve damage or a need for a blood transfusion (Bosi and Bartolozzi 2010; Styczynski et al. 2012). Peripheral stem cell donation requires pre-treatment with granulocyte-colony stimulating factor [G-CSF] to increase the number of peripheral stem cells. While the long-term increased risk of cancer has been shown to be unfounded, (Shaw et al. 2015) G-CSF injections are painful and can cause bone pain, headache and flu-like symptoms (Pulsipher et al. 2005). In addition, peripheral stem cell collection involves large bore catheters and the associated risks of clots or infection, and some children need blood transfusions post-donation (Styczynski et al. 2012). The risk of umbilical cord stem cells procurement should be nil provided that the birthing process is unchanged (American College of Obstetricians and Gynecologists 2009). However, when the child is conceived to donate to an older sibling, the cell dose may be insufficient (Locatelli 2009) and this may lead to a second collection of bone marrow from the child as a toddler (Chang 1991).

One could try to argue that the donation is in the child donor’s best interest because despite the physical risks of HSC donation, it is psychologically and emotionally best to have a living sibling. If the recipient were to die, at least the donor and family are able to say that they “did everything”. And yet, more recent data show that there are serious psychological risks of being a donor (Packman et al. 1997, 2010; Wiener et al. 2007; Pentz et al. 2014; Switzer et al. 2017). So, whether or not it is in the donor’s best interest, all things considered, is ambiguous at best today as it was in 1990, when minimal to no data existed.

Even if the donation is not in the donor’s best interest, all things considered, I believe that parents may still be justified in authorizing the donation. Elsewhere I have argued to respect broad parental discretion provided that their decisions do not sacrifice the basic needs and interests of any child, even if some compromises may be necessary (Ross 1998, 2015). I have also challenged the best interest standard as the appropriate guidance principle (Ross 1998, 2015, 2019) despite the fact that it is the prevailing guidance principle in policy statements around the globe (United Nations 1989; British Medical Association 2019; Larcher et al. 2015; Canadian Paediatric Society 2004; Royal College of Physicians and Surgeons of Canada 2013; Weise et al. 2017; Katz et al. 2016). I have challenged the best interest standard because it is too demanding a guidance principle for parents in an intimate family setting (Ross, 1998). Taken literally, it would require that parents sacrifice their own significant interests and needs for a small benefit to their child. It would also require that parents do what is best for each child which may not be possible if the siblings’ needs and interests conflict. Buchanan and Brock also challenge using the best interest as an actual goal asserting that “as a guidance principle, the best interest principle is to serve only as a regulative ideal, not as a strict and literal requirement” (Buchanan and Brock 1990, p. 236). Parents need greater flexibility than such a principle allows.

However, even if best interest is the appropriate guidance principle, Buchanan and Brock do not support state intervention if the parents’ decision is not the “best”, but argue for a distinct “intervention principle”:

[U]tilizing our distinction between guidance principles and intervention principles, we noted that—except perhaps where the most basic interests of the child are at issue—a mere failure on the part of the parents to optimize the child’s interest is not sufficient to trigger justified intervention by third parties, or even a challenge to the parent’s decision-making authority (Buchanan and Brock 1990, pp. 235–236).

Buchanan and Brock support broad parental discretion and even argue that parental interests are a legitimate ethical value in their decision making model: “the interest of parents in making important decisions about the welfare of their minor children” (Buchanan and Brock 1990, p. 226). They argue that parents require significant freedom from oversight, control and intrusion in balancing the needs and interests of each family member and the family as a whole. Some refer to the gap between best interest and harm as “the zone of parental discretion” (Gillam 2016); others refer to parents whose decisions fall in this zone as “good enough” parents (Winnicott 1953) or refer to their decision as “good enough” or meeting a “good enough standard”. While in principle guidance aspires to what is in the child’ best interest (what Buchanan and Brock call a “regulative ideal”), in practice, guidance gives wide leeway to parental discretion for decisions that meet a good enough standard. Both of these guidance principles are distinct from an intervention principle that empowers third-party intervention (See Table 12.2).

Table 12.2 A visual aid representing guidance and intervention principles
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3 HSC Transplantation: A Case That Deserves Special Scrutiny

Even if HSC donation is determined to meet the child’s best interest, or at least good enough, standard, Buchanan and Brock assert that HSC donation by minors is one of the special cases for which oversight (intervention) is always appropriate. Children are vulnerable and the decision to authorize an HSC donation should require a process that requires serious reflection. I was the lead author of the 2010 AAP statement that created a process to determine if a child should be permitted to serve as an HSC donor for an intrafamilial stem cell transplant (AAP 2010). The process required evaluating whether five criteria were met:

  • (1) there is no medically equivalent histocompatible adult relative who is willing and able to donate;

  • (2) there is a strong personal and emotionally positive relationship between the donor and recipient;

  • (3) there is some likelihood that the recipient will benefit from transplantation;

  • (4) the clinical emotional, and psychosocial risks to the donor are minimized and are reasonable in relation to the benefits expected to accrue to the donor and to the recipient; and

  • (5) parental permission and, where appropriate, child assent have been obtained (AAP 2010, p. 396).

To ensure that these criteria were met, we required the involvement of a living donor advocate (LDA) or living donor advocate team (LDAT). The concept of an LDA(T) comes from the solid organ transplant setting (Rudow 2009; Hayes et al. 2015). It became a mandatory component of solid organ transplantation after several high profile deaths of living liver donors (Department of Health and Human Services, Centers for Medicare and Medicaid Services 2007). We argued that the inclusion of the LDA(T) in pediatric HSC transplantation would help ensure that the donor’s well-being is considered independently and that the concerns and needs of the potential child donor are addressed. We argued for the inclusion for the LDA(T) from the onset—even before HLA testing is done (AAP 2010).

The first criterion requires that adults, who can consent for themselves, be considered as HSC donors before children. Now, again, the most likely HLA identical relative is a sibling but also other relatives are sometimes a 10/10 HLA-match. In the AAP statement, we considered whether all adults (parents, adult siblings or other adult biological relatives) should be HLA-tested and excluded based on histo-incompatibility before any minor siblings were HLA-tested, and decided against sequential testing because of the time urgency that an HSC transplant often involves. While we conceded that screening of potential children and adult donors should proceed simultaneously, we did argue in favor of selecting an adult over a child to be the HSC donor if both were 10/10 HLA-matches, all other things being equal. The AAP also considered whether a search of the international bone marrow registry which had over 6 million adult registrants at the time of the statement should be required before engaging child and adult family members. We argued no because of the time it takes, the greater possibility that a match may renege, and the possible benefits from additional minor histocompatibility antigens and because “it ignores the fact that authorization of a stem cell donation by a minor is within the proper realm of parental decisionmaking” (AAP 2010, 396, references omitted).

However, one point that we emphasized in the statement is that the decision to do HLA testing should not be seen as a simple blood test that can be done automatically, because the implications are anything but simple. The failure to consider the significance of HLA testing can be seen in the empirical data provided by the Lübeck team where the father of an almost 13 year old with myelodysplastic syndrome, whose 18 year old sister served as the donor, explained:

  • F: YES, well (.) there was no discussion in any case that I can remember, but it was just clear that you have to do something for your (.) little sister and for your daughter.

(Minz, father, 28) 31 of 66

Similarly, the mother of a two year old child with acute myeloid leukemia (AML) whose 7 year old sister served as the donor is quoted as saying

  • M: But also as part of the testing. It was just like, now the family will [go] first.

  • I: Yes.

  • M: You weren’t asked. They just said, “Who wants to go first?” like. (laughs)

  • I: Everyone line up.

  • M: Yes, basically

  • (Kelling, family interview, 317–321

This lack of reflection about the significance of HLA-testing explains why it is critical to involve an LDA(T) independent from the team caring for the ill sibling from the time the idea of donation is being discussed—that is before HLA testing is performed. Once a family member (child or adult) is identified as a 10/10 HLA-match, it is hard for the individual (or family) to decide against that individual serving as an HSC donor. Parents and children describe being identified as a match as resulting in “no choice”. The mother of a young child who required 2 bone marrow transplants from a sibling brother who was 9 and 10 at the time of the transplant explained:

And because of that it was clear to me, without us having a massive discussion with Zorro, that Zorro WILL donate whether he wants to or not.

(Zucker mother 26)

A 15 ½ year old sister who served as a donor for her younger brother explained:

  • D: because then I got so much PRESSURE from (.) my parents: come on, and you have to do this, he’s your brother after all and erm (.), if you don’t do this, then erm (..), yes, then- you you won’t forgive yourself for the rest of your LIFE and come on, just do it. And then at some point I’d been put under such emotional pressure that I just said: OK, you know what, (.) you’re not going to give up anyway and I don’t want afterwards to have to take responsibility, I didn’t donate bone marrow to my brother, now – now you can go here and there and you can visit him, can’t you.

  • (Kunow, donor, 17)

That is, when a child’s life is threatened and the health care providers recommend intrafamilial donation as the only or best option, if a potential donor is located within the family, the families feel compelled to move forward. This is why it is so important to engage an LDA(T) prior to HLA-testing. The LDA(T) engages with the potential donors, making sure that their needs, interests and concerns are expressed and addressed. The LDA(T) should also discuss that there may be alternatives (e.g., in the form of a stranger donation from one of the international HSC transplant registries or even a non-HSC treatment plan for the ill family member). Under extreme circumstances, the LDA(T) must be empowered to either delay or prevent a donation if the harms are so great as to overwhelm the potential family benefit (see criterion 5 below).

This sense of “no choice” can lead to disturbing situations. Consider for example the case described by Opel and Diekema (2006) in which a sibling is tested to be an HSC donor for a sibling who raped her. She is found to be an excellent HLA match and the mother then consents for her daughter (the rape victim) to be the donor to her son who is in jail for the assault. The girl, LR, undergoes only a cursory evaluation of her psychosocial and emotional well-being and an inadequate discussion about her willingness to serve as an HSC donor (she undergoes a single psychological evaluation that was done with her mother in the room). Ross and Glannon (2006) wrote that the first error was in HLA testing without a more complete discussion of whether the half-sister would be an appropriate donor if found to be HLA-compatible.

The second criterion states that the donor and recipient must have a positive relationship—this would exclude parents from seeking out siblings who are non-intimate (e.g., if they are genetically related but estranged due to adoption, donor gametes, or other social circumstances). For example, consider again the case of LR who served as HSC donor for her sibling who was in jail for raping her (Opel and Diekema, 2006). If this criterion had been in place, LR would not have undergone HLA typing. In the case of Curran v Bosze (1990), the judge ruled against HLA-typing due in part to non-intimacy. In this case, Mr. Tamas Bosze petitioned to have the twins he fathered with Ms. Nancy Curran to be HLA tested for potential HSC donation to a son born and raised by a different partner whom, he admitted, they barely knew. Ms. Curran, who had sole legal custody of their twins, objected to HLA testing as she stated she would not authorize the bone marrow procurement due to the risks to the twins even if they were a match for their half-brother. The Court sided with Ms. Curran. These cases influenced the AAP policy writers to argue for the need for a donor advocate (or a similar mechanism) for all child donors (except newborns donating umbilical stem cells) prior to HLA-testing (AAP 2010, p. 397).

The third criterion focuses on the likelihood that the recipient will benefit. Given the psychological trauma felt by the donor if the recipient dies (Butterworth et al. 1992; MacLeod et al. 2003)—even when the donor is a stranger (Billen et al. 2017; Wanner et al. 2009)—performing a HSC transplant should only be undertaken with a minor donor if there is a reasonable likelihood of success. Regardless of what the health care team or the parents say, the donors often blame themselves if the recipient dies or has serious complications like graft-versus-host disease [GVHD] (MacLeod et al., 2003). This sentiment was heard in interviews with several of the Lubeck donors: In the first example, the brother donated twice to his sibling--once at age 9 and again at age 10 years.

  • I: So how was it actually for you, when you found out that (..) Zedrick became ill again even after the first donation?

  • D: Erm I blamed myself, (4) because my bone marrow, or I thought, my bone marrow must be bad. (6)

  • I: Did your parents say anything about this?

  • D: No.

  • (IM Zucker, donor, 309–312)

In this second example, the mother, then the sister and finally a stranger donated to a child with AML who subsequently died:

  • D: of course that was another strange feeling, that (.) I first thought like this: now everyone is blaming me a bit (..), I’m to blame that my cells didn’t manage it, but I really couldn’t influence that.

  • (IM Jaschke, donor, 82)

Finally, in this third example, a 15 ½ year old sister donated to her younger sister who subsequently died.

  • I: At first it worked very well with the (.) with the transplant (.) and then there were problems in the end. How was THAT for you?

  • D: That was (..) um, if I (.) put it in plainly: it was SHIT, (..) because erm, well for me it really wasn’t good, because I then partly blamed myself, erm (.) that I’M to blame because in the end it was MY bone marrow that then erm (.) worked against his cells and destroyed them.

  • (IM Kunow, donor, 84–85)

In the AAP statement, we suggested that the LDA(T) “should ensure that the likelihood of success is above some threshold to justify imposing the risks of donation on the minor sibling (AAP 2010, p. 397).” In order to avoid donor self-blame, we also stated what role the LDAT can play:

The donor advocate should be involved from the onset, starting with the decision about whether the minor should undergo HLA testing. When older children and adolescents are being considered as hematopoietic stem cell donors, they should be included in all stages of the decision-making process to the extent that they are capable. Discussions that involve the potential minor donor must be developmentally appropriate. The psychological as well as medical aspects of the donation should be discussed in language that is understandable to the potential donor. Consistent with his or her capacity, the minor needs to be aware that the donated stem cells may not engraft or may fail after engraftment, the recipient may develop severe or even fatal complications of the transplant (e.g., GVHD), or the original disease may recur. The minor needs to be aware that the outcome is beyond his or her control (AAP 2010, p. 398 [references omitted]).

The fourth criterion requires minimizing the risks to the donor and ensuring that the risks to the donor and recipient are reasonable compared to the benefits to the donor and the recipient. Some of the psychological and emotional risks can be minimized by appropriate donor preparation. This does not always happen as seen by a quote from the mother of a 7 year old who donated to her 2 year old sister with AML:

  • M: and then access was established and I just DIDN’T know. The doctor just said “OK, do you need anything else or shall we just get straight on with it”. Like, oh God. And they hadn’t prepared her for it, not properly I felt, that now she- and that was really bad for her, so she was afraid of falling asleep and it hurt and actually there was nothing in there but she’s a child and there was still that feeling there was a needle in her.

  • (Kelling, family interview, 327)

In our AAP statement, we suggested preparation could include “medical play-acting, allowing them to ask questions, and by including them in the decision-making process to the extent of their ability” (AAP 2010, p. 397). A recent European study shows, however, that this is still not standard practice at all centers (Wiener et al. 2019).

The fifth criterion supports involving the child sibling in the decision making process when capable. And yet, the document also states that “the parents’ consent alone may be sufficient, unless state law or institutional policy requires the minor’s active assent (AAP 2010, p. 398).” In the AAP statement we discussed the importance of engaging the child even if his or her refusal could be overridden, and we explored under what circumstances it might be binding:

a donor advocate should explore the reasons for the refusal and determine if further education and discussion can modify the minor’s refusal. A child mental health professional and/or an ethics consultant/ethics committee may also need to be involved to help clarify the child’s concerns. The donor advocate, child mental health professional, ethics consultant, or ethics committee must have the authority to suspend or prohibit a donation if it is determined that the donation is likely to have a serious and sustained long-term adverse effect on the donor. The recipient should not begin myeloablative preparation for bone marrow infusion (conditioning) unless there is a clear decision to proceed with the donation (AAP 2010, pp. 398–9).

In the Lubeck study, two children did initially refuse but eventually donated because the parental pressure had been too great. It is unknown what would have happened had they persisted in their refusal. And yet, despite the fact that the children did not believe they could refuse, the children were glad to have been asked. Here is a 23 year old woman reflecting on her donation at age 5 ¾ years to her older brother (9 1/3 years at the time of transplant) for adrenoleukodystrophy:

  • D: Then my parents also asked me, erm (..) I have to say I really don’t know what (.) might have happened, (.) if I’d said no, whether my parents would have in any case decided or not for my brother, (.) but erm that was important at the time, to get my opinion on it and not simply to take decisions completely over my head. (.) I’m still OK with that (.).

  • (Bahr, donor, 9)

In sum, parents can modestly thwart some of the interests and needs of the donor sibling for the benefit of the family provided that they do not sacrifice the child’s basic interests and needs (Ross 1998, 2015). The transplant team should engage minors in discussions to the extent that the minors are able to participate, and minors should have an LDA(T) to provide them with a voice and support throughout the process.

4 The Importance of the Living Donor Advocate/Living Donor Advocate Team (LDA(T))

The requirement for an LDA(T) in the AAP policy statement was controversial in the US when first published, with concern expressed by some that it failed to respect parental autonomy and would delay, if not impede, life-saving stem cell transplants (Revera and Frangoul 2011; Joffe and Kodish 2011; Wells 2011). The criticisms were surprising because (1) Joffe had played a major role in writing the statement and only withdrew at the eleventh hour (Ross 2011); and Wells’ institution had an advocacy program (Ross and Antommaria 2011). It is important to correct several inaccuracies stated by our critics. First, the intent of the LDA(T) was not to impede sibling donations, but only to ensure that the child was treated as a patient in his or her own right. Data that came out shortly after the statement was published showed that the majority of programs did not have separate teams for donors and recipients (for both children and adults) (O’Donnell et al. 2010). Furthermore, data from the US show that pediatric stem cell transplants have increased annually despite this recommendation. (Health Resources Service Administration n.d.). Second, although we asserted the importance of engaging the child in the process, we were clear that a child’s refusal was generally not dispositive, but the reasons for the refusal should be explored and that in rare cases “it would not be appropriate for health care providers to permit a child to serve as a bone marrow donor, despite parental permission.”(Ross 2011, p. 520).

Chan and Tipoe from The University of Hong Kong criticized the document from the other direction. First, they argued for the importance of the child’s right to decide whether or not to participate and focused on Gillick competency. (Chan and Tipoe 2013). Second, they also criticized our policy to permit all potential donors to be HLA tested simultaneously and argued that “unless a recipient sibling will suffer from serious complications or die without the transplantation and no other medically equivalent donors are available, there is no moral or legal basis to violate the donor sibling’s right to bodily integrity.”(Chan and Tipoe, p. 1). I agree with their second criticism and in fact, the first criteria of the AAP policy clearly states that a child should only serve as a stem cell donor if: “there is no medically equivalent histo-compatible adult relative who is willing and able to donate”. The AAP Committee on Bioethics was willing to allow HLA typing of minors and adults to be performed simultaneously only because in many cases, time is of the essence. In cases where this is not the case, (e.g. the use of transplant for non-malignant, not time-sensitive conditions), we would agree that adults should be tested first. But I strongly disagree with the first argument given by Chan and Tipoe. I do not believe that the minor child should have final authority in deciding whether or not to be a bone marrow donor for a sibling. As argued in the AAP statement it was the responsibility of the LDAT to decide whether the child’s refusal had merit and then to override the parents (and not have the child be the one who decides to override the parent(s)). The importance of this distinction is clearly explained in Tim Henning’s essay in this book (see Chap. 11. Deciding about Child Bone Marrow Donation—Procedural Moral Pitfalls). Professor Henning explains why it is morally “permissible for parent to make the donation decision for their children, not allowing them to decide the matter themselves.” His argument is based on the moral need to protect the child and to avoid burdening the child in both the short- and long-term, with the weight of a present-day refusal to provide a possible life-saving donation: “it may be in the child’s own interest (and in the interest of her later self) after all to suffer the surgery now rather than to have the burden of the decision on her shoulders now and in the future”.

In the same year as the AAP statement was published, The World Marrow Donor Association (WMDA), which describes itself as “an international organization fostering collaboration in clinical transplantation and promoting the interests of unrelated stem cell donors”, decided “that it is important to collaborate with those involved with family donors, to standardize the care” (Van Walraven et al., 2010, p. 1269). The WMDA published a document entitled: “Family donor care management: principles and recommendations).” Which stated that “[i]t is an important requirement that unrelated donors always have a specified independent donor advocate …Independent donor assessment is equally necessary for family donors (Van Walraven et al. 2010, p. 1270). The document was even more adamant about the importance of the LDA(T) when the donor is a child (Van Walraven et al. 2010, p. 1270). In its more recent statement in 2016, the WMDA argued in favor of separate teams for stem cell donors and recipients, whether the donor was a child or adult, and regardless of the relationship. (Bitan et al. 2016, pp. 97–98). The WMDA supported our idea of a donor advocate for minor donors but disagreed with our wording of condition # 2, that there be a “strong personal and positive relationship, or in the case of directed cord blood transplant, that a strong personal and positive relationship has to be anticipated”. The WMDA proposed to modify this criteria to ensure the avoidance of psychological harm” (Bitan et al. 2016, p. 98). They concluded: “All siblings should be screened for seriously negative relationships as they go through the donation screening process, preferably before HLA typing as well.” (Bitan et al. 2016, p. 98). Given that the WMDA interprets a non-relationship (as was seen in the case of Curran v. Bosze) as a negative relationship, our conclusions are virtually identical.

In sum, then, there is broad consensus of the need for an LDA(T) for child sibling donors.

Why do I digress to discuss the living donor advocate? While situations in which a minor’s refusal to serve as an HSC will be (and should be) uncommon, a minor’s refusal should alert the transplant team that the presumption of parental authority must be questioned and the LDA(T) must evaluate the appropriateness of compelling the child to donate. The decision not to permit a sibling stem cell donation will be (and should be) rare. I have no reason to believe that an LDA(T) would have sought to delay or reject any of the donors in the Lubeck study, but I would encourage all stem cell and bone marrow transplant programs to adopt this requirement.

5 Concluding Remarks

Buchanan and Brock’s framework for pediatric decision making requires third party intervention for HSC donation to ensure that the child donor is treated as a patient and respected as a person who has needs and interest of his or her own. An LDA(T) is an appropriate third party mechanism for intervention in HSC transplantation involving minor donor children. The AAP guidelines provide a set of criteria that, if followed, can help establish the boundaries of ethical HSC transplantation involving a minor donor sibling.

The family is a valuable institution and parents have broad (but not infinite) discretion on how they raise their children and the health care decisions they make on their behalf. The case of HSC donation by a minor for his or her sibling helps clarify the guidance principle to which parents are held and the proper scope and forms of intervention that limit parental decision making.