Keywords

The families we approached have two exceptional things in common: they all experienced the dramatic event of a life-threatening disease such as leukaemia affecting one of their children; and, in all of these families, that child was treated with a stem cell transplant taken from a sibling’s body.

In richly informative interviews they showed us what they had experienced, how they remembered the events, and how they narrated them – in a great many different ways, and at various time points afterwards. Beyond the transplant itself, some of the families and family members encountered entirely unforeseen challenges and obstacles, and despite their efforts often found themselves able to solve the problems that confronted them. We felt welcomed and accepted as empathic observers. We heard from families who experienced the interviews as an occasion to reflect on that time in the past, and also to exchange views with us and with each other. We are extremely grateful to the families and all interviewees for being so open and sharing their perspectives with us. On these occasions we heard explicit accounts and also recognised more implicit, but nevertheless vital, overarching family narratives. Complex issues were explained to us and detailed memories shared.

After analysing the collected materials, we discussed our main findings and sketched out preliminary conclusions. We invited a number of colleagues to join us in this process: they contributed commentaries, which have grown into the chapters of this book. We are very grateful for the inspiration and insights that originated in them. As summarised in the opening chapters to the four sections of this book, what we have seen has shown that the theme of ‘transplantation between siblings’ goes well beyond straightforward moral considerations. In order to grasp the issue, we needed to address not just the ethical complexity, but also familial and psychosocial considerations, ontological and existential aspects, and even the interrelation between the donor and recipient bodies.

The ethical question is not solely about weighing advantages against disadvantages of the transplantation – but nevertheless our study gave us a more comprehensive understanding of the issues around utility as well. While confirming some of the medical and psychological benefits for recipients and donors, the study might add some weight to the other side of the balance – the disadvantages and burdens of the procedure of sibling donation, compared to unrelated donors or haploidentical transplants from parents. Besides the weighing of advantages against disadvantages, the ethical issues of transplantation also include the possibilities of an emotional transformation of family relationships as well as of the quality of family life itself.

Overall, we do not want to conclude that sibling donation should not take place, but we still want to raise awareness of the long-term implications, downsides and psychosocial difficulties of the procedure in the context of whole families, difficulties which are perhaps less clearly visible from a purely medical, outcome-oriented perspective.

Ultimately, we certainly have more questions than we did when we started. Some of them may lead to further discussion beyond this book. We want to mention five areas where we think that there remain open questions, and invite readers to give them more attention.

  1. 1.

    Action and outcomes

The situation of a child’s severe illness, together with the option of treating her with a stem cell transplant taken from her sibling, is one that is utterly exceptional and beyond everyday care. Such a situation and its consequences are difficult to understand, yet understanding seems important in order to make decisions under considerable stress and urgency. Understanding the meanings connected to the option of ‘donation’ by the sibling is also important for family bonding and for the narratives that evolve, after either consenting to this option or rejecting it. Physicians have clearly described the action of extracting stem cells from one body and infusion into another. It entails a small risk and some burden on the side of the donor but is a tremendous chance for the sick child. Physicians present the whole procedure as being manageable.

However, a closer look reveals that the issue of stem cell transplantation is actually far more complicated. There may be unsuccessful outcomes, there is a risk that re-transplantation will be needed, or that there will be other potential complications, and much more. Thus, it must be clear to the parents that the decision taken now will matter in the future and will be an exceptional experience for the family. In conditions of such overwhelming complexity there is a need to simplify, to see the basic structure of the situation, to distinguish the essential from the peripheral.

From a theoretical perspective, other questions arise. What is, in fact, ‘the action’ under scrutiny? What is the ‘choice’, what is the ‘outcome’ of this action? Amartya Sen has written extensively about this. While criticising utilitarianism and thinking more fundamentally about social choice, in particular about what counts as the ‘outcome’ of a choice to be ethically evaluated, he calls our attention to the danger of reductionism in some of the dominant streams in the consequentialist literature (Sen 2000). This is relevant to our context as well. Outcomes are plural and cannot be reduced to one or more measurable results (‘outcome parameters’), such as life years or contribution to happiness and welfare. Two aspects would be lost: There is first the act of choice, and then the processes and events that lead to certain results, and that continue to have repercussions in the lives of the families. Sen writes: “A person’s preferences over comprehensive outcomes (including the choice process) have to be distinguished from the conditional preferences over culmination outcomes given the acts of choice” (Sen 1997, p. 745). Comprehensive outcomes include the essential question of who does the choosing, i.e. who are the agents in the choice process. And they include all other relevant aspects of the choice process as well. For some of our respondents in the study, the processes of choice and of coming to terms with it retrospectively were more burdensome and complicated than the act of the transplant itself.

One important aspect of the outcomes of the decision, which many of our respondents emphasised, is the fact that the primary responsible decision-makers are the parents. As a consequence of their (and ultimately no one else’s) decision, they treat one of their children in an instrumental way that is at least partly in conflict with their parental obligations to care for the child who is used as a stem cell donor. Parents apply what Sen calls ‘agent-sensitive’ responsibility and evaluation (Sen 2000, p. 488). They are aware of their obligations to each of their children. The situation is seen by moral philosophers, and some parents, as a conflict. The impact and the aftershocks of the decision on the family system are related to what the parents (and physicians) have inflicted on a child, who may have experienced a psychosocial benefit but certainly not a medical one, and these choices are attributable to them as parents.

The question of the inclusiveness of the concept of outcomes also extends over time. In the history and narratives of the family space, where are the limits to the consequences that must be attributed to ‘the action’? Both the actions involved in transplantation and the outcomes of the actions are far more complex and extensive than parent and child decision-makers could reasonably foresee at the point of decision-making. Even years after, the transplant is still alive in their memories and is recognised to have changed many things in the family. In some families it remains an ever-present feature of their family history and is surrounded by family narratives.

From these observations and reflections a set of questions follows: What can be learned from this for our ideas about action and outcomes of action, and about foreseeability more generally? What are the implications for medical ethics and beyond? The ‘action’ at the centre of stem cell transplantation is clearly much more complex than only a transfer of tissue and the medical primary and secondary outcomes.

  1. 2.

    Ethics in care practices

Apart from its consequences, moral questions also circulate around the transplant itself. When we reflect ethically on the key decision in the stem cell transplantation context, we have good reasons to argue that a consequence-independent, duty-only moral perspective is as inadequate as a consequentialist one. The injunction of a child’s ‘duty to donate’ seems rather misplaced. For similar reasons an outcomes-only perspective (such as the utilitarian) is inadequate in that it does not do justice to the moral perceptions of the people who are actually the responsible decision-makers. A consequences-only perspective would not properly address the questions that are raised by the initial act of making one child a donor, such as the legitimacy of conferring the donor role on the child.

A consequence-sensitive relational assessment of care as practice seems more appropriate. However, it also needs to include a critical reflection on the virtue-related offers to the donor child (to become a saviour, a hero, or even to have made a sacrifice). This assessment should be based on an ethics of care (Barnes et al. 2015; Vosman et al. 2020), which allows us to understand the conflicts and relational intertwinement of responsibilities (Walker 2007) that arise in caring for one child, for the other children, for the parents caring for each other and for themselves, and even for the children caring for each other.

Care and responsibility are terms that capture the essence of the ethical concerns moving the actors in these dramas. A key question raised for the further development of an ethics of care is therefore: In what sense did the attention and responsiveness of family members towards each other change as a result of their different experiences during the time of illness and transplantation? How can we understand and evaluate the conflicts of responsibilities that arise in the practices of care relationships during and after such difficult situations?

  1. 3.

    Framing the situation of decision-making

In the standard view, the key ethical question in stem cell transplantation between minor siblings is whether it is permissible to use tissue from the body of a healthy child who is too young to consent in order to help another person. We have heard families narrating that they felt they had no alternative in that situation, and were unable to take a different decision, or that they did not even see the decision as ‘a decision’ to be taken but as a matter of course.

How far is this situation constructed by the medical professionals who present it to the parents in a certain way? Recent developments in the registry of unrelated donors and also in transplantation of partially mismatched, haploidentical parents (haploHSCT; Berger et al. 2016) suggest that the situation for the parents would be significantly different if they had to think first about an unrelated donation, then about themselves donating as parents and, only if neither strategy worked out, about asking another child to be tested and if possible to be a tissue donor. The two scenarios A and B (A the standard view; B the view of transplantation using children as a last resort) clearly have different implications.

Clinical routines need to be more reflective about framing the situation of decision-making as scenario A or B, i.e. about how to present it to the parents, rather than concerned only with the justification of stem cell donation per se. This is of course a topic for medical ethics and law. The German Transplantation Law § 8a stipulates that before a minor sibling can be considered as a donor, an adult donor should be sought. In practice, however, this is usually not done if there is a family with two or more children. Thus, the relationship between the law, medical ethics, and practice needs to be investigated more thoroughly.

  1. 4.

    Healing of a family

Families are involved both in caring practically for a child and in the worry about the child’s illness. We encountered many different examples and were able to study them to a certain extent. When a child becomes seriously ill, the rest of the family, while physically unaffected by the disease, is very often affected emotionally and morally, both individually and on the level of organisation of family life. Sometimes (but not always) family life had to be reorganised in order to cope with the new circumstances. Illness is therefore more than just the disease of one individual child. It is a family issue, sometimes a family crisis. Understanding this affects our understanding of a disease and also our concepts of treatment and healing.

What is transplantation as a treatment? Sibling donation contributes to making this disease a family affair: in some ways a dangerous adventure, in others a difficult experience, and sometimes a tragedy. Nevertheless, for some families the transplantation also became an experience of pride, agency and strength because they were able to regain control and influence over a situation of serious illness. Such an experience may also strengthen family ties. Hence, the topic of family transformation within a medical context raises many questions for further study by a sociologically and philosophically informed child psychology, psychology of the family, and medical ethics.

  1. 5.

    Familial bodies as a remedy

The development of new successful treatments and emergent styles of clinical research, for example in ‘precision’ or ‘personalised’ medicine, brings the physical body into the realm of family debates and, in new ways, into negotiations of responsibility as well. To our families it became quite normal to consider having a family member’s body at their disposal when transplantation had to take place, or when information for ‘multi-omics’ medicine together with certain kinds of surveillance were needed.

Do we therefore need to think about new social-ontological concepts of the body? Will these medical options transform our family relations, or at the very least introduce a substantial new dimension? The bodies of the family members become a resource for healing purposes. Once the data, for instance about HLA compatibility, are collected they remain potentially useful in future.

Our research into this rather specific situation of stem cell transplantation between minor siblings has revealed rich realms of questions and themes that will be fruitful for further debates extending beyond the concrete scenarios discussed in this book.