Keywords

1 The Ethical Challenges of Sibling Bone Marrow Donation

Bone marrow transplants from one sibling to another are a serious challenge for medical ethics. An informed consent, essential prerequisite for any medical intervention and especially one without benefit to the donor, is highly questionable. How can the decision be made freely and without coercion if the life of a sibling depends on it? Saying no to donation would threaten the life of the brother or sister. The reactions of other family members – accusations, rejection, isolation – would be dire. Being aware of these consequences would create a particularly severe form of implicit coercion and is undoubtedly capable of undermining self-determination to such an extent that consent might be considered invalid.

To complicate matters, donors are minors and often at an age when full informed consent may not yet be possible. Even though bone marrow transplantation is an intervention whose nature, significance, and scope is comparatively easy to understand, it cannot be taken for granted that children under the age of 12–14 years will be competent to consent. Parents as their legal representatives must give consent on behalf of the child. However, the parents’ consent has to be based on what is in the donor’s best interests. An intervention without benefit to the donor child, such as a bone marrow donation, can hardly be justified by the commonly used concept of the donor’s best interests.Footnote 1 Interventions in minors without potential personal benefit may be justified if they are associated with only minimal risks and burden. However, although it is disputed what exactly counts as minimal (Radenbach and Wiesemann 2009), a surgical intervention under anaesthesia in bone marrow donation certainly involves more than minimal risks and burden. Not surprisingly, and for all these reasons, medical ethicists have called into question the ethical justification of bone marrow donation by a minor sibling.Footnote 2

The parents in the Lübeck study on intrafamily bone marrow transplantation,Footnote 3 too, express such fundamental concerns:

  • Father: This this exact issue (.) has cropped up in several places. Is it actually somehow permissible, erm, to use this- a child as a construction site for the other? (Wahl)

The answer to this obviously rhetorical question can only be no. Or does it? In what follows, I will examine how bone marrow donation can be reconciled with the moral ideal of family. To that purpose, I will specify the meaning of care, focusing particularly on the role of minors. Moreover, I will take the example of intrafamily bone marrow transplantation as a test case to identify the dangers of care and ask how to best mediate them.

2 What Are Families For?

The intuition of many of the family members interviewed in the Lübeck study – and the general public, as well – seems to point in a different direction. Shouldn’t everyone in a family be prepared to stand by the other family members? Isn’t that exactly what families are there for? Many answers from parents, all of whom are undoubtedly people with a high sense of responsibility and parental love for their children, and also from siblings suggest this view:

  • Mother: Well, it became evident relatively quickly that erm (.) Greta was a match, that that would work and then it was actually a matter of course for us. We didn’t have any other (..) thoughts on the matter, did we”. (Grohmann)

  • Father: I don’t know, he always took it for granted. There wasn’t anyone else who put him (.) under pressure or anything, there (.) there WAS no discussion at all. ‘I’ll do that for my brother’. (Kötter)

  • Non-donor sister: that she has to have bone marrow and that we all need to get ourselves tested, (.) or whether we wanted to get ourselves tested and I think, that’s actually not something to question. (Kirstein)

These responses from a mother, a father, and a non-donor sister do not suggest that bone marrow transplantation is an exceptional act of altruism. These so-called supererogatory acts would be praiseworthy, but not morally required. In an ethics of rights and duties, they go beyond what can be demanded of someone (Heinrichs 2015). If someone registers in a database as stem cell donor and is willing to donate bone marrow to a stranger in case of a match, this is indeed considered a heroic act, a special act of selfless charity. For example, a German advertising campaign for tissue typing expresses this view by inviting potential candidates: “Do you want to be a hero?”Footnote 4 In contrast, bone marrow donation in the families studied here is not celebrated like heroic behaviour. The families see it as a “matter of course”, the testing for suitability as a stem cell donor as something that simply cannot be called into question. As if this particular caring act was not an extra, not a special “on-top”, but simply a moral given. It is somehow foundational to the moral identity of the families involved.

In families, many things are different in a way that is unusual – and sometimes even irritating – for ethics. The family maintains a special role which to some ethicists is dubious and even worrisome. A major problem associated with the special role of the family in ethics dates from a time when men and women did not enjoy equal rights in marriage and partnership, when the husband was still considered the head of the family and the wife and children his subordinates (Okin 1989; Fineman 1999). Women in the countries of the global North have largely freed themselves from this form of legal, political, and social dependence. But the problem remains that children are still largely subject to parental authority (Archard 2003). Legal regulations, such as the parents’ duty to promote the well-being of the child, are intended to limit this power of authority (Schües and Rehmann-Sutter 2013a, b). The child rights movement also seeks to strengthen the rights of children as morally relevant individuals. However, any form of political and legal emancipation of children reaches its limits because of their invariable need for protection (Schickhardt 2012; Wiesemann 2015).

And yet most of us will not classify the reactions of the families studied here as unusual. The self-evident nature of help in families, their willingness to stand up for each other, is not surprising. Just because it seems so self-evident it has often not been given further consideration in academic ethics (Beier et al. 2016). As a consequence of a methodological as well as normative individualism, traditional ethics has ignored the special moral connection in families and thus implicitly treated it as irrelevant (Blustein 1982; Schoeman 1980; Lindemann Nelson and Lindemann Nelson 1995). This should indeed worry us because, after all, this way of life has relevance for almost everyone. Most of us grew up in families and are currently living in one. And many ethical questions, at least in health care, relate to persons in family relationships (Lindemann Nelson and Lindemann Nelson 1995; Verkerk et al. 2014).

The difficulty of understanding the family from an ethical perspective is also due to the fact that a multitude of life styles are common today. Some types of family have only recently been legally recognised. For the sake of simplicity, the term family I will use here shall be understood to mean all social groups of at least two persons who live together or manage the major part of their day-to-day life together, and comprise at least one child and one caretaker, regardless of whether the caretakers are married or unmarried, or genetically or socially related to the child. The stories told here are about families with at least two children: one who is ill and one who is to donate bone marrow. In what follows, I will focus on groups of people who include underage children because this way of life is prototypical for the moral image of the family: it assumes that the members take care of each other. But, of course, two adult persons living together can also see themselves as a family and strive to live up to the same ideal.

3 The Moral Ideal of Family

How does this moral ideal look like? Simply put, families are places of care for each other. Iris Marion Young understands family to be

people who live together and/or share resources necessary to the means of life and comfort; who are committed to taking care of one another’s physical and emotional needs to the best of their ability; who conceive themselves in a relatively long-term, if not permanent relationship; and who recognize themselves as family. (Young 1997, 196)

Young’s idea of the reciprocity of care, however, creates a philosophical problem. Isn’t the care for children rather unidirectional? Parents take care of their children, but children do not take care of their parents in the same way, at least not when they are young. And whether and to which degree children as adults have a duty to care for their old parents is philosophically controversial.Footnote 5 So, what might reciprocity of care mean? In order to understand this concept, one has to consider that, for one thing, families are not short-lived groups. They are conceived as groups that are meant to last for a long time, even indefinitely. As a consequence, the identity of families is not bound to certain persons. It can be maintained even if individual members leave the family or die. Care is often not returned to the original caring person, but is passed on to the children of the next generation. Reciprocity is created by the children as adults taking over the role of parents and passing on the love, warmth and care they received to their own children. Thus, reciprocity relates to roles rather than to persons. Moreover, if reciprocity between persons is achieved, it is usually not an exchange of the same type of care. Children do take care of their parents, but rather in ways they can master. Their care is not material by nature. But they do perceive the needs of their parents and, if necessary, may try to comfort and support them. When such gestures are made by young children, who themselves are in considerable need of help, this can be particularly touching.

In order to maintain family relationships in the long run, all persons involved must somehow practice caring. Receiving care and taking care becomes part of everyday routines. This applies to adults and children alike. Even small children imitate the parent-child relationship by, for example, playing with their dolls and thus practicing caring behaviour. When, in the absence of parental control, older children have to care for their younger siblings this can also be an exercise in this practice.

The meaning of family care is not easy to grasp from an ethical perspective. Essential aspects of parental responsibility are, in the words of Samantha Brennan and Robert Noggle, “care, advocacy and protection” (Brennan and Noggle 1997, 12). In everyday life, care often boils down to acts of advocacy or protection. However, in the course of the child rights movement it has become clear that the child should not only be an object of advocacy and protection, but also be treated like a real subject of human relationships. Care does not only aim at satisfying needs and representing interests, but at paying respect to the person cared for. From the perspective of liberal ethics, it is unclear how this can be realised in the context of family relationships and, in particular, when children are concerned. Respecting a person is usually understood as respecting the autonomy of the person which in families is compromised in various ways. I have argued elsewhere that young children can nevertheless be acknowledged as morally relevant persons if their carings are respected, carings being complex emotional attitudes with which a person identifies and which form part of their identity (Wiesemann 2016, 97). Carings are internal in the sense that they are our own; they represent our self. We cannot easily distance ourselves from them or feel that they are just imposed on us by our nature. The concept of caring allows us to distinguish the merely sensual desires of a person from those attitudes the person identifies with and can reflect on with some subtlety. In the context of bone marrow donation, a young child may particularly care for his/her sick brother or sister, and although donating bone marrow may not yet be the result of an autonomous decision, it may nevertheless arise from of a deep caring emotion that should be respected. The intuitive responses of siblings to the request for donation reflect the fact that they considered the caring act as something deeply ingrained in their family identity.

  • Non-donor brother: NO, of course not. Well I think (.) don’t remember at all now, well I’d be surprised if someone said: ‘nah, I don’t want – can’t get myself typed, I would never (laughs) donate bone marrow to my sister’. (Minz)

  • Non-donor sister: that she has to have bone marrow and that we all need to get ourselves tested, (.) or whether we wanted to get ourselves tested and I think, that’s actually not something to question. (Kirstein)

  • Father: I don’t know, he always took it for granted. There wasn’t anyone else who put him (.) under pressure or anything, there (.) there WAS no discussion at all. ‘I’ll do that for my brother’. (Kötter)

4 The Dangers of Care

It is obvious that family is not solely based on the autonomous decisions of the persons involved. Parents may have agreed together to start a family, but their children did not decide to belong to that family. Annette Baier has argued that it is precisely such unchosen relationships, and especially care relationships, that acquire a special moral significance, if only because they are so common in human life (Baier 1987). Yet, care relationships can be morally challenging in that they construct the person being cared for as passive and tend to have a paternalistic patronizing effect, thus threatening to undermine the idea of the moral equality of all human beings (Held 2006). There is no doubt that such a demanding and complex practice is in many ways in danger of degenerating into something negative. Some of these concerns are also evident in the family interviews:

  • Mother: 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)

  • Non-donor sister: because if you believe you’re losing a child then it’s- then this child has a different status in the family. (Minz)

  • Mother: [During the time of illness, the other children] actually needed me TOO, but it just didn’t happen, you know. (Kirstein)

As we can see from these answers, danger always looms large when care is requested (Hoagland 1991, 252f; Feder Kittay 1999, 34). Care can be misunderstood as a duty of sacrifice and self-abandonment, it can be imposed on individual members like a servitude, it can be granted arbitrarily, favouring only a few or, in these cases, just one child over the other children, it may even be hypocritical and disguise selfish motives. Clearly, the conditions under which intrafamily bone marrow transplantation takes place are a major challenge to the ideal of family care. Typically, the following questions arise: How is it still possible to treat each child as an individual and a person if one of them requires so much attention that the others must be neglected? How is it possible to maintain a common identity when the pressure on a single person is so intense? How can the ideal of reciprocity be maintained when someone receives a gift so special that it cannot be returned?

In a father’s comment, the serious danger of the donor being instrumentalized and treated only as an object resounds:

  • Father: This this exact issue (.) has cropped up in several places. Is it actually somehow permissible, erm, to use this- a child as a construction site for the other? (Wahl)

The father points out the ultimate danger of objectification which is looming with this kind of therapy. Quite interestingly, it would seem that objectification is threatening not only the care recipient but also the caring donor. Carers often feel like being objectified. Especially in long and demanding care relationships, they may perform their tasks merely mechanically and they may no longer feel that they are regarded as a person with a life and interests of their own. An important question, therefore, is whether and how families succeed in confirming both donor and carer as subjects and morally relevant persons, despite this impending danger.

The donors tried to achieve a more active role by adopting the role of the caring person and the responsibility associated with it out of their own accord.

  • Donor: Yes like I said, you really have a great responsibility and erm (..) I really tried to like keep myself away from people who were ill, so that nothing happened to me so that I’d like get ill, some kind of cold or something. (Kötter)

Another donor compares donation to pregnancy.

  • Donor: I have to (..) erm because for that I- because I’m not just responsible for MY body but also for another body, erm like and act like that. (..) I mean I feel like that now I’m pregnant as well (laughs). (Wahl)

This is a very telling interpretation. Even more so than in the case of bone marrow donation, the body of the pregnant woman is instrumentalised for the growth of the foetus. The comparison is particularly interesting because pregnancy is not only a very good example for the ethical issues involved in instrumentalising the body of a person and, thus, the person herself (Wiesemann 2018). It is also a prerequisite for the very existence of donor and recipient. Instrumentalizing the body of someone is not alien to the idea of family, but rather constitutes it. A positive concept of family can emerge when pregnancy, or comparable types of instrumentalization, are successfully interpreted as a beneficial and constructive care relationship. The ability to accept and constructively interpret such ambivalences is an essential achievement of the good family (Jansen 2004).

That is why it is so important that the donors playfully assume a position of power - as a deliberate contrast to the feeling of impotence necessarily associated with the instrumentalisation of their bodies.

  • Mother: Melissa was also TOTALLY cool, yeah? and Mighel had just been um discharged from the BMT and the two fought again for the first time (.). ‘oh’, Melissa says to me, (loudly), ‘YEAH YOU KNOW WHAT AND NEXT TIME YOU WON’T GET ANY MORE BONE MARROW FROM ME’ (laughs), I thought that was so cool. I had to LAUGH so much, because it was so cool, so childish, so normal you know, yeah. (Molle)

By playfully threatening not to donate next time, Melissa resumes authorship of her life. Her mother sees this as her way of restoring normality. Normality in this context means: the relationship is reciprocal again – dependencies are again shared equally between donor and recipient.

The powerful position of the donor also manifested itself in another, rather dramatic, family story. Some time after donation, the recipient girl from the Kirstein family got depressed and attempted suicide. Her sibling donor severely reproaches her for that:

  • Recipient: well [I was] also very depressed and then I tried to kill myself and um my brother could never approve of that like, because he said: ‘I SAVED your life and now you just want to throw it away!’ (Kirstein)

Obviously, the game of power has become serious. The balance of mutual care – which is also a balance of power – is threatened once again.

  • Recipient: what worried me a bit for quite some time, was that I felt I OWED him something, on the principle of: ‘Yes, you saved my life and I owe you something’. But erm for one thing I can’t owe him erm my whole life long erm- I mean that he like, I mean that I have a DEBT towards him or something. That can’t be the case, can it, and it can’t be the case either that erm he makes some kind of statements and I just HAVE TO listen to them and be sad. That can’t be the case either, you know? Because he doesn’t have a RIGHT either to say, no way: you don’t have the right to KILL YOURSELF, because um I donated bone marrow to you or whatever, yeah? So he got in a huff and when I say: why don’t you just ask me WHY I tried to kill myself anyway, you know? (Kirstein)

Reacting to this shift in power, the sister emphasizes that her brother, even though having saved her life, has no right over her life. She no longer wants to be just the person who received a bone marrow donation. She demands her brother to face up to the reasons for her suicide, to consider the life she led after transplantation. She will not be forever trapped in the role of the grateful recipient, but is moving forward in her development, even if her life takes an adverse turn.

Care relationships must be negotiated again and again. They have to be dynamic and continue to evolve as long as they exist.

5 Conclusion

The statements of the various family members examined here clearly demonstrate the moral complexity of family relationships. From a moral point of view it is important, on one hand, to recognize each family member as a person and as morally significant and, on the other, to maintain the identity of the family as a whole. In the family, each member is responsible for the well-being of all. Such reciprocal care can only be realized over time, depending on the abilities of each individual. Persons who as childrens were the recipients of parental care will later in life do their share of care by raising future generations. Such a dynamic realization of reciprocity secures the existence of the family over long periods of time. To accomplish this goal, every member of the family has to exercise her- or himself in the practice of care. Even young children are not exempted from this task, although they may often realize it in a more playful manner. Relationships of care can thus acquire a high degree of complexity.

Under these circumstances, the danger of turning care relationships into abusive ones also looms large. In particular, there is the serious risk of family members being instrumentalised for the welfare of others. However, one has to keep in mind that care work is always threatened by this kind of danger. It is decisive for the moral ideal of family whether it is possible to mediate this risk, i.e., to constructively reinterpret forms of instrumentalization as particularly laudable examples of personal commitment and responsibility. 

The families that present themselves here try in various ways to mediate the danger of the misuse of care. Bone marrow transplantation among siblings is a special challenge because persons who are still minors have to provide care for their siblings. The resulting imbalance of power must be redressed not only between siblings, but also between parents and children. It helps that the moral ideal of family is not static, but dynamically realized over time. The stories the family members tell illustrate that, if everything goes well, it is even possible to affirm the family’s moral identity in a particularly felicitous way.