Keywords

When a child’s life is at stake and parents have to decide whether to let a sibling donate bone marrow, it is easy to be concerned with the outcomes of one’s decisions only. The only relevant question, it may seem, is this: Which alternative is to be preferred, which is less harmful and dangerous, etc.?

This outcome-focused point of view anticipates what we will think in retrospect. And in the cases under discussion in this volume, it is easy to anticipate that everyone, the donor child included, will be happy about the decision to donate. This is confirmed by some of the interviews:

D: only in retrospect we’re now actually just happy that everything went so well and (.) that- that we were somehow able to help and yeah. (Grohmann, donor, 41)

M: (sighs) //that’s how it was// a burden of choices (...). YES and then we did it and it was OK that we did it and I believe, (.) yes.

I: You’d do the same thing again?

M: Definitely, I’d do the same thing again, of course, (.) yeah yeah. So (.) definitely. (Bahr, mother, 149)

Understandable as it may be, the focus on beneficial outcomes overshadows other significant issues. What matters, I want to argue, is not just whether the best outcome is achieved but how it is achieved. Decisions about intra-family BMD not only lead to better or worse outcomes, they are also made in right and wrong ways. It is possible to make a decision that is correct, but do so for questionable reasons, and vice versa. This chapter focuses on two morally significant procedural issues.

  1. 1.

    Even if the benefits of a donation outweigh the burdens, all things considered, there is still a question as to whether those who decide have responded to the values at stake in the appropriate way. Specifically, there is a danger of viewing the children as mere “value receptacles.”

  2. 2.

    The issue of the child’s autonomy is especially virulent in the cases at hand, and while it is not entirely clear what respect for this autonomy demands, in these cases there is a special danger of misuse. It is the danger of using the burdens of autonomy to undermine autonomy.

1 Value Receptacles and the Separateness of Persons

In typical cases of intra-family BMD, we have to weigh the burdens on one child (surgery, fear, etc.) against the benefits to another child. It is natural to conclude that the benefits outweigh the burdens. But the ease with which we seem to perform such calculations deserves some suspicion.

It is well known that some economists and philosophers (most notably Nobel-laurate Kenneth Arrow) have claimed that such interpersonal comparisons of well-being do not make sense. Their point is not an epistemological one; it is not just that it is often hard or impossible to know who is better off and who is worse off. The problem is conceptual in nature. When we compare something that is bad for an individual A but good for a different individual B, it makes no sense to ask whether it is, on the whole, good or bad – or so they claim. Attempts to say that it is good on the whole invite the question: “Good for whom?” But we have already answered any reasonable version of this question – it is, we said, bad for A and good for B. Once we try to summarize our person-bound findings by a further evaluation on some “common scale,” we are, they say, just confused.

I do not think that this worry is compelling. But there is a different problem in the vicinity. Whether or not there is a conceptual problem with interpersonal comparisons of well-being, there is often a moral problem with decisions that aim to maximize an interpersonal sum of well-being.

One of the first people to articulate this worry was John Rawls. Rawls observes that “the most natural way […] of arriving at utilitarianism […] is to adopt for society as a whole the principle of choice for one man” (1971, 26 f). To see what he has in mind, contrast the following claims:

  • Intrapersonal trade-offs:

    People are often required to accept a small burden for themselves in order to attain a greater benefit for themselves.

  • Interpersonal trade-offs:

    People are often required to accept a small burden for themselves in order to attain a greater benefit for others.

It will often be that case that you should forego certain opportunities for enjoyment in order to benefit more greatly later. Quite similarly, utilitarians will say that you should forego these enjoyments if doing so secures greater benefits, not for yourself but for your neighbor. Now, it may be correct that you should indeed do the latter. But what is counterintuitive is that according to utilitarianism, both claims are descriptions of the very same moral phenomenon. And this is surely far from clear. Intuitively, in cases of intrapersonal trade-offs the person who carries the burdens is also the person who is compensated by the greater benefits. And this will not be the case with interpersonal trade-offs. And utilitarianism does not offer us the resources to mark this difference. So, Rawls says: “Utilitarianism does not take seriously the distinction between persons” (1971, 27).

Robert Nozick (1974) presses the very same problem in the following passage:

Individually, we each sometimes choose to undergo some pain or sacrifice for a greater benefit or to avoid a greater harm… In each case, some cost is borne for the sake of the greater overall good. Why not, similarly, hold that some persons have to bear some costs that benefit other persons more, for the sake of the overall social good? But there is no social entity with a good that undergoes some sacrifice for its own good. There are only individual people, different individual people, with their own individual lives. Using one of these people for the benefit of others, uses him and benefits the others. Nothing more. [...] To use a person in this way does not sufficiently respect and take account of the fact that he is a separate person, that his is the only life he has. (1974, 32 f)

This objection has come to be known as the separateness of persons objection to utilitarianism. Briefly, the objection is that in aiming for a maximal interpersonal sum of well-being, we fail to acknowledge the fact that there will typically be some who benefit and others who pay the cost for their fellows.

We find instances of this form of moral neglect in striking passages in the interviews, e.g.:

M: […] Speaking for myself I always thought, it’s a- it’s not such a major intervention. OF COURSE, you’re interfering with a perfectly healthy child, Zorro is basically healthy, erm but when you look at the BENEFIT of it, then that is NOTHING. (Zucker, mother, 26)

Here, one wants to say: “Well, if the benefits and burdens accrued to one and the same individual, it would indeed be safe to say that the burdens pale in comparison with the benefits. But you ignore that here, there is one person who benefits and a different person who is being left to bear the burden.”

Take a trivial example: If you can buy some great bread for an extremely low price, you might say that the cost, compared to what you receive, is “nothing.” But you would certainly hesitate to say the same thing to someone else who just bought the bread for you. Low as the price may be – since this other person paid the price in order that you, another person, benefits, that is not nothing.

Most people recognize that there is, in fact, a moral problem here. But it is worth spelling out what exactly the problem is, and to find a theoretical rationale for the intuition. After all, the problem at hand will require a practical solution. So we need to know what exactly the moral mistake that is being made here amounts to, how serious it is, and how we can strive to avoid it.

As the wording in the above quote suggests, Nozick thinks that the separateness of persons objection consists in a charge of treating people in an instrumental fashion, as mere means to others’ ends or as resources to be used by others. In a recent paper, R. Yetter Chappell (2015) explains in what sense there is an instrumental stance in play. As he observes, it makes no sense to compare how two persons, A and B, fare in terms of A’s well-being. So if we weigh A’s and B’s well-being, we treat them as instances of a general property of well-being, which either of them can instantiate equally well. Given this, then if we strive to maximize that general property, we treat the particular well-being of A, and B, as means to an end with regard to which they are replaceable. The well-being of A and the well-being of B matter only insofar as they help to constitute a certain amount of the general property. Chappell calls this “constitutive instrumentality.” In consequence, both A and B could come to feel that they are being treated and seen as mere receptacles for well-being, or value.

The separateness of persons can be put into focus when we imagine other kinds of trade-offs. It is natural to assume that most persons would be willing to sacrifice a limb, if this is required to save their own lives. Within one person’s life, this is a trade-off that pretty clearly makes sense. On the other hand, I suspect that few of us would say that other people should be willing to sacrifice a limb to save our lives. Of course, we may wish that other people are so heroic. But that is very different from the view that we can expect them, in a normative sense, to do such things for us.

This becomes especially clear once we describe cases with the concept of a moral claim-right. J. Thomson gives examples that show this clearly. One of her (deliberately absurd) cases is this:

If I am sick unto death, and the only thing that will save my life is the touch of Henry Fonda's cool hand on my fevered brow, then all the same, I have no right to be given the touch of Henry Fonda's cool hand on my fevered brow. It would be frightfully nice of him to fly in from the West Coast to provide it. It would be less nice, though no doubt well meant, if my friends flew out to the West Coast and carried Henry Fonda back with them. But I have no right at all against anybody that he should do this for me. (Thomson 1971, 55)

So the concept of a right brings the separateness of persons into sharp focus. Even when a person has to do something that is not very costly to save our life, we do not think that we have a right to this. Correspondingly, we would not want to say that they owe this to us. Of course, we do not do justice to the complexity of the case if we say merely that the protagonist has no right against Fonda. Thomson herself makes this clear numerous times, stressing, e.g., that it would be nice of Henry Fonda to help. We might add that we would find it callous and selfish if he refused to do it. So the case is not supposed to suggest that helping is morally neutral. It would be virtuous, laudable, and so on. It is important to stress this. But it is also important to consider the full range of moral concepts at our disposal, and of the fine discriminations that they allow us to make. And Thomson’s example suggests that there are circumstances in which we do not have a moral right to others’ help, even if our lives are at stake and even if the help could be provided easily.

What is required by respect for the separateness of persons, and for the fact that individuals cannot be treated as so many locations for a general commodity of well-being? One important part is the reactions that are fitting responses to the value of an individual’s well-being. It is important to be aware of, and explicit about, the fact that any interpersonal trade-offs have to leave aside something that is not commensurable. Thus, attitudes of ambivalence and doubt are apt responses to what is, of necessity, an attempt to treat different person’s fates as exchangeable commodities.

We find examples of this kind of awareness in some of the interview materials in this book:

“M: Now this really is always an issue: here we have a healthy (.) PATIENT, (.) and (.) to do the bone marrow donation, they administer a general anaesthetic (.), when they put the central line in (..) they also administered a general anaesthetic, it always involves some sort of (.) risk, which probably might also put some other families off, but what that means right now, that we need to administer something to a healthy human being, (.) not for their own benefit, rather so that they have to, so to speak, help someone else. (Preuss, mother, 20)

F: 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, family interview, 224–229)

Secondly, the separateness of persons should be understood to at least influence the proper exchange rate of well-being, so to speak. As I said, we can expect that one and the same person will be willing to sacrifice a limb in order to save her own life. But we cannot expect the same across different individuals. That does not mean, however, that we cannot legitimately expect anything from others. While it is unreasonable to demand that others should be willing to give a limb, they can definitely be expected to suffer certain inconveniences if someone else’s life is at stake. As A. Voorhoeve (2014) puts it, we do seem to have a standard of “a permissible degree of self-concern”, and of its limits. These intuitions should inform our decisions, although they will, of course, be vague. The idea would then be that the exchange rate for well-being transfers should be sensitive to our moral view of permissible self-concern. If we would not think it wrong for someone to refuse to bear a certain burden in order to secure a certain benefit for us, then we may not just impose it on her.

There is, at any rate, one further practical upshot that is certain: If the law specifies regulations for child donations, and if these laws seem at least reasonably well attuned to the fact of the separateness of persons, then respect for the separateness of persons definitely requires that the law be taken strictly and seriously. In light of this, the following example reveals a serious problem:

I don’t remember at all whether they erm looked further as well, because the problem was that Dorothea was relatively (.) small and erm (.) that they, let’s say, needed a particular amount and erm yes, then erm (.) yes it wa- it was a bit borderline, didn’t – don’t know how many (.) millilitres they erm were ALLOWED to take of this bone marrow. It was specified precisely, it was (.) erm was also a situation like, Dorothea had to (swallows) (.) was supposed to donate and then erm there was a kind of- kind of consultation and then a erm a doctor was there who was basically (.) well, on Dorothea’s side (.) and then erm well, who was basically supposed to represent [her], that erm yes, well she’s small and erm you can’t just take vast amounts (laughs) of bone marrow from there and well, he saw it from her side, and I (.), said, of course we’ll take and erm and if – I dunno, if you’re allowed to take 40 ml but we need 60, we’ll take 60, like, that’s clear. You want to help another child and you hope that erm nothing happens to the other one. (Dietrich, father, 54–55)

This passage illustrates that in the attempt to save a child, parents are easily tempted to ignore laws that are designed to protect the interests of their other child. Importantly, the point is not to blame the father (or the parents). In a situation of desperation, we cannot hold parents to high standards of conscientiousness. But it was of the utmost importance that a medical professional should take the side of the donor and argue against the donation. Arguably, it would have been even better if the official regulations had been enforced and followed.

2 The Burdens of Autonomy, and Their Misuses

We routinely assume that parents have the authority to make most of the decisions that affect their children. Usually, this authority is backed by the law. The same holds true in the cases discussed here. Whether a child donates bone marrow for a sibling is not, ultimately, up to him- or herself.

In the interview material, we find some very explicit expressions of parental authority:

[I]t was clear to me, without us having a massive discussion with Zorro, that Zorro WILL donate whether he wants to or not. And as a result this matter was, er, initially not debated with Zorro much at all, rather, like, it was ACTUALLY already CLEAR for us, whatever Zorro wanted. (Zucker, mother, 26)

Although not everybody would be so frank about it, few people doubt the presumption of parental authority. Yet it is surprisingly difficult to say what justifies it. The main lines of justification that come to mind do not draw the line between children and adults in quite the way they would have to, if they are to vindicate our current practices. Consider some typical defenses of the presumption:

  1. 1.

    Lack of Competence

In many important areas, children lack the knowledge and foresight to make the decisions that are in their own best interest.

  1. 2.

    Lack of Prudence

Children often irrationally prefer smaller short-term benefits to greater long-term benefits.

  1. 3.

    Special Relations

The close relations of love and trust within a family render permissible acts that would, in other contexts, be impermissible intrusions.

  1. 4.

    Responsibility

In having a child, parents take on a special responsibility for their well-being. This special responsibility makes it permissible to assume authority over their decisions.

Again, the problem with all of these typical defenses is that they do not draw the line where it needs to be drawn. It is a sad fact, but a fact nonetheless, that many adults are lacking in foresight, knowledge, and prudence, and therefore are prone to make decisions that are against their own best interest. People gamble away their money and home, eat and drink so much as to seriously endanger their health, leave or neglect their families on spontaneous and selfish impulses or out of a lack of concern – only to find later that they have ruined their lives in entirely predictable ways.

This happens with an awful lot of people – but nobody thinks that this gives other people the right to interfere in their decisions. If we know someone who makes lots of bad and imprudent decisions, we may offer our advice (and if we know them rather well, do so rather insistently). But that is not at all the same as taking away their authority. I may find a lot to criticize in other adults’ decisions, but that does not mean that I may take the freedom to make their decisions for them.

So all of the deficiencies that we find in many children can be found in a depressing number of adults as well. If these deficiencies were sufficient to establish that others can assume authority over their lives, that would change our practices and relations among adults in very drastic ways. But in fact, we do not think that our fellow adults’ deficiencies make their authority questionable. On the contrary, many of us even feel that even trivial restrictions (like laws requiring helmets or safety belts) come very close to objectionable paternalism. With children, we lack these scruples.

True, some deficits may occur in children more regularly, and as a matter of biology. But why does this matter? The question of whether a child should have the authority to make certain decisions should depend only on that child’s competences and deficits, not on their statistical distribution over a population. And as far as biological determinants are concerned, I consider it very well possible that many comparable deficiencies in adults are biologically determined as well.

What about the special family relations? They cannot do the required justificatory work either. I am close with my adult sister, but that does not give either of us authority over the other.

What about the final point, the special responsibilities that parents have assumed by having children? Even this point does not provide the required justification, or so I think. First of all, the fact that a person’s parents chose to have her will remain true as long as the person exists. So if parents have a special responsibility for those they have created, and if this responsibility gives them authority, then parents should have the authority to make even the decisions of their adult children (at least in those cases where their adult children would decide against their own interest). We clearly do not think that this is true. So our moral view does not, in general, seem to say that this kind of responsibility generates authority. Secondly, it is not clear why parents’ responsibility should generate this form of authority. It may be plausible to say that this authority generates strong positive duties of beneficience, aid, and support. But why does it give parents the right to systematically execute power in matters that concern their children, against their children’s will?

There is, however, one important difference between children and adults. It does not have to do with the general level of competence. Again, I do not believe it is true that all children are less competent than all adults, and yet we do grant full authority to all of the latter (pathological cases aside). The important difference is that children will change over time, in a way and to a degree that is greater and more certain than it is with typical adults. And when they face the consequences of their decisions, it will often be from a perspective of an older and very different individual. This is something that matters, and something we have a rather general reason to expect. Here is why.

Derek Parfit has argued that certain facts about personal identity over time may have important ramifications for the issue of paternalism. I cannot argue for Parfit’s position here. (Nor do I have to; Parfit’s own arguments can be found in Parfit 1984, Part III.) But I want to suggest that if we take his position seriously, this makes it possible to provide a more convincing argument for our practice of letting parents decide whether their children donate bone marrow to siblings.

As Parfit famously argues, the continued existence of a person over time does not consist in the continued existence of a certain entity, a Cartesion Ego. When we speak of the continued existence of one and the same person over time, this can in fact be fully explained in different terms – that is to say, in terms that do not invoke the continued existence of any kind of entity at all. The facts that are really picked out by our talk of identity over time is really the instantiation of certain relations of psychological and physiological continuity and connectedness across time. To put it simply, to say that one and the same person exists both now and then is to say that between the person that exists now and the person that exists then, there are certain close physiological and psychological connections which can be traced over time. But these connections are a matter of degree, and they can be instantiated in degrees that do not quite suffice for the existence of one person over time. Hence our relation to ourselves in the future and in the past is not necessarily categorically different from our relation to other persons – or so Parfit’s arguments suggest.

As Parfit argues, this fact has a number of normative and moral implications. And in part, they concern the issue of paternalism. Suppose we intervene in someone’s decision because we predict (correctly, we may suppose) that this decision is strongly against the interests of that person at a later time. Typically, we think of this as an intervention in the name of that person’s self-interest. And the difficulty with paternalistic interventions of this kind is that practical irrationality as such does not seem to license them. But now suppose that the person who is about to make the decision will predictably change a lot. Consequently, the physiological and psychological connections that underwrite identity over time will hold only to a lesser degree. And even though we may still speak of the same person at the later time, this simply masks the fact that the relation between the stages is a lot more like the relation between distinct persons than it is in other cases.

And this, Parfit argues, means that the normative restrictions on such a choice may change as well. When we intervene with a decision because it will have bad consequences for the person later, the objection to this may be moral in nature. The case may no longer be categorically different from a case in which a person makes a decision that will have bad consequences for another person later on. Again, this is because, again, there is no categorical difference between our relation to later stages of ourselves and our relations to other people. The difference is more a matter of degree, and therefore some of the moral objections that are apt in the latter case may be apt in the former.

Parfit agrees that this may be hard to swallow at first. But he goes on to explain:

It may be easier to believe this if we subdivide a person’s life into that of successive selves. As I have claimed, this has long seemed natural, whenever there is some marked weakening of psychological connectedness. After such a weakening, my earlier self may seem alien to me now. If I fail to identify with that earlier self, I am in some ways thinking of that self as like a different person. (Parfit 1984, 319)

Importantly, Parfit’s view is that this perspective is not pathological, or some kind of distortion. On the contrary: A failure to “identify” in cases of weakened psychological connectedness correctly registers that the existence of one and the same person is, in effect, a manner of talking, and a way to summarize facts in an absolute fashion that are really gradual and vague in nature. A failure to “identifiy” in these cases is, so to speak, better attuned to the real metaphysics of personal identity.

What follows from such a stance? Consider the following example:

Reconsider a boy who starts to smoke, knowing and hardly caring that this may cause him to suffer greatly fifty years later. This boy does not identify with his future self. His attitude towards his future self is in some ways like his attitude towards other people. This analogy makes it easier to believe that his act is morally wrong. He runs the risk of imposing on himself a premature and painful death. We should claim that it is wrong to impose on anyone, including such a future self, the risk of such a death. More generally, we should claim that great imprudence is morally wrong. We ought not to do to our future selves what it would be wrong to do to other people. (Parfit 1984, 319 f)

This normative difference in how we see imprudent decisions also makes a difference for the question of paternalism. Once great imprudence is seen as morally akin to wronging another person, we have a very different justification for interference in imprudent decisions. Parfit puts it thus:

We do not believe that we have a general right to prevent people from acting irrationally. But we do believe that we have a general right to prevent people from acting wrongly. […] Since we ought to believe that great imprudence is seriously wrong, we ought to believe that we should prevent such imprudence, even if this involves coercion. (Parfit 1984, 321)

To sum up, if we accept the view that imprudent decisions about one’s future are not categorically different from decisions that are harmful for other people, there is a whole new rationale for paternalistic interventions. We do not need to think of paternalism, and of parental authority, as intervening in the name of rationality and the person’s self-interest. We can think of it as the legitimate attempt to prevent great moral wrong. On the one hand, the smoking boy from the above example may be onto something when he views his future self almost like a different person. But on the other hand, it is for precisely this reason that his harmful action is a case of moral wronging.

I return to the main thread of the discussion. I have criticized some typical defenses of parental authority above; I have now described one possible defense that I consider more promising. The defense is that a child, in making a decision, will often impose burdens on him- or herself later in the future. And in the case of children (unlike the case of adults) we have very much reason to expect the subject to undergo much change in between. The relation between the child who decides and the older person who has to bear the consequences will often involve weakened forms of psychological and physiological connections. This may lead the child to see his or her future self as a different person. But by the same token, we should view the case much like one in which we keep a person from wrongfully imposing burdens on someone who is, to some degree, like a different person. And if a wronging threatens, interference and coercion may be legitimate.

However, we must now face the most serious issue. All of the justifications of parental authority have claimed that this authority must be based on the interest of the child, or her future self. To the extent that these justifications work, they suggest that exercising authority over our child is legitimate because and insofar as it is done for the child’s sake, or for the child’s own good. The crucial problem is that in the cases we are discussing here, parents seem to use their authority over one child to serve the interest of a different child. Parents are here urging their children to do things that are against their own, narrow self-interest. As it stands, none of the above justifications cover this.

For example: If a child would wish to refuse to donate bone marrow, does that reveal a lack of competence that endangers the child’s own good? This is certainly far from clear. Or does the child show a lack of prudence – and thereby a tendency to wrong her own future self? Again, this is far from clear. On the face of it, a refusal to donate seems to be very much in the child’s interest.

At this point, I want to introduce a further important consideration that is often neglected. To give someone authority over something is itself to impose certain burdens on him or her. In some cases, I think, parents may have sufficient moral reason to spare their children these burdens.

A number of authors have observed that having certain options, and the authority to choose them or not, can in fact be a disadvantage. One of the earliest discussions of this kind is to be found in the work of economist Thomas Schelling (1960). He observes that is can often be a strategic advantage not to have certain options. (E.g., it can be good for the bank clerk not to know the code for the safe, and thus not to have the option of opening it.) Other authors stress that having an option may increase social pressure, and it may increase the need to justify and defend oneself. G. Dworkin (1988), e.g., observes that not all couples will be better off when their society adopts liberal regulations for prenatal screenings and abortions. Having the right to check for disabilities and to abort a fetus that is likely to be disabled is not simply having an additional option, which everyone is free to either take or leave. Instead, it means that having a disabled child now becomes a conscious choice, whereas it was beyond choice earlier. And this means that social pressure, demands for justification etc. increase. D. Velleman (1992) makes similar points about the effects of liberal regulations for assisted suicide. But he also gives a more mundane example: If a professor invites his student to his home for dinner, he gives this student an additional option. The student now has the option to visit his professor’s home. And of course, he also still has the option of not doing so, if he declines the invitation. Still, it would be a mistake to think that the student’s menu of options has simply increased, in a way that could not possibly disadvantageous. As Velleman observes, there is one option that the student no longer has, namely the option of not visiting his professor’s home without having to decline his invitation. Due to the invitation, what was previously the default now becomes something for which one needs an excuse.

Now, this matters in our examples as well. Parents who have to decide will certainly feel the pressure, and the need to reassure themselves that what they decide can be justified. The question, “Am I doing the right thing? Will I be able to defend this choice against those concerned later on?” will be itself felt as an enormous burden, keeping them pondering day and night. This experience makes clear what it would mean to impose this burden on a child. Note that the point is not that the child will experience the burden in this same way at present, although this may be true as well. Rather, the point is that the child will later have to cope with the fact that the outcome of the decision is on her. If she refuses to donate, that not only means that her sibling may not survive. In addition, it means that her sibling’s death is her responsibility, something she decided to allow.

Being in this position is an enormous burden. By giving the authority to decide to one’s child, one not only places the relevant burden on the child now. One also risks that the child, by making a certain decision, will impose on her later self the burden of having to live with the responsibility.

This, I think, is the valid moral reason why it is permissible for parents to make the decision for their children, not allowing them to decide the matter themselves. As I have just argued, the justification for this can follow the more common patterns after all. Properly understood, 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 own shoulders now and in the future.

Once we see this justification of parental authority, however, we can see a very particular danger of misuse. In some cases, parents may be tempted to use the burdens of authority to undermine authority. That is to say, they let their children feel the responsibility and the guilt they would have to carry if they made the wrong choice, to manipulate them into choosing differently:

F: The bone marrow transplant issue came up at once. Yes and then everything hap- happened to both of them but, what kind of procedure for that child or for the sibling, THAT, er, of course trying somehow, you try, to persuade them somehow and whatever and ‘no, no, no’. Yes, I’m telling you it sounds stupid, I always said silly [things], I’d say: ‘Kira, you’re the only chance’, I’d say, ‘do you want your brother to die?’ Yes fine, I’m also using psychological pressure, not DELIBERATELY, on on her, or rather on Kira. That still cuts me to the quick TODAY, that we said that. (Kunow, father, 72)

In the interview material, the daughter of the same family recalls the pressure that was put on her:

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)

This is a document of an instance of a very serious form of manipulation – and an instance that all the parties concerned still seem to remember as extremely hurtful. There is a good reason for not giving the authority to make these decisions to the children. This good reason is that the pressure, and the anticipated need to justify their choice, is too burdensome for them to carry. What we find here is a family in which this pressure is used – deliberately invoked in order to get the daughter to consent to the decision. In view of this, it actually seems preferable not to put children into the position of having to make, and to defend, the choice at all, and instead be frank about the fact that the decision is not for the child to make.