Abstract
Non-therapeutic research on children raises ethical concerns. Such research is not only conducted on individuals who are incapable of providing informed consent. It also typically involves some degree of risk or discomfort, without prospects of medically benefiting the participating children. Therefore, these children seem to be instrumentalized. Some ethicists, however, have tried to sidestep this problem by arguing that the children may indirectly benefit from participating in such research, in ways not related to the medical intervention as such. It has been argued, for example, that non-therapeutic pediatric research does not instrumentalize the children enrolled since it has the prospects of furthering their moral development. We argue that this argument is far too undeveloped to be taken seriously.
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Notes
For a summary, see e.g. Ross (2006), ch. 1.
Just how much understanding, rationality, and independence should be enough to address the relevant moral worry is obviously open to discussion, an issue closely connected to discussions about the appropriate criteria for valid informed consent. Children are interesting in this context precisely because, it is generally assumed, they are not able to offer such consent.
Nancy King terms these kinds of benefit “collateral benefits”, and she characterizes them as follows: “benefit arising from being a subject, even if one does not receive the experimental intervention (for example, a free physical exam and testing, free medical care and other extras, or the personal gratification of altruism)” (King 2000, p. 333).
This suggestion could obviously be elaborated in a variety of ways. Two major ideas could perhaps be distinguished: one being that children ought to be taken seriously as bona fide moral agents, by being allowed to discharge the moral responsibilities they have towards society; the second being that the participating children will personally benefit, whether or not they appreciate it themselves, by helping others.
Since the discussion is almost invariably phrased in terms of children’s moral development, we shall do the same, but most of the points that we are about to make would be applicable to other kinds of personal development as well.
Williams, it should be said, cautions against reckless implementations of this general message. One of the things that he emphasizes is that children are treated as ends in themselves by being taught to cooperate under reasonable terms of cooperation, and that children are vulnerable by having limited ability to judge whether those terms are reasonable, and articulate any objections.
Ross (1998) argues, as did Ackerman (1980) before her, that there are moral reasons for giving parents considerable leeway in involving their children in activities that do not necessarily benefit the latter. But also on Ross’ view it is critical that children are treated with due respect, and not solely as a means, and she contends that enrolling children in minimal risk non-therapeutic research need not imply that they are treated solely as a means. She maintains in this connection that even if parents coerce their children to participate in such research the children need not be disrespected. “Rather”, she argues, “it is one way in which parents can attempt to steer their child’s development into a socially responsible adult” (p. 93). Ross continues: “The model of constrained parental autonomy permits parents to override their child’s dissent in minimal risk research if they believe that it will serve to guide his development according to their vision of the good life […]” (p. 93). By implicature, then, she could be interpreted as claiming that when and because parents have the relevant educational reasons for allowing their children to participate, the children are shown sufficient respect. At a minimum, her views on the importance of parental leeway seem to lean on the presumption that parents will try to further their children’s development.
From a Kantian point of view it might not even be possible to treat children (at least not the younger ones) as an end, since that would require something of them that they are not, which is rational (in a Kantian sense). Although some commentators accept this consequence (van der Graaf and van Delden 2012), and exclude individuals without decision making competence from their analysis, we see no reason to be faithful to Kant’s own ideas in the present context. Instead we find it more reasonable (although not self-evident) to regard any sentient being (cf. Parfit 2011, p. 216) as at risk of being instrumentalized.
As has been pointed out, there are certainly ways to use others in a morally unproblematic sense. For example, typically we do not catch a cab in order to benefit the cab driver, but to get somewhere in a convenient and quick enough way. That in itself would not amount to using this individual as a means in an ethically problematic sense, in part, perhaps, because the cab driver would not be used solely as a means. The background assumption that the cab driver is doing this work freely, as part of a reasonably fair transaction with non-negligible chances of benefitting him or her, is part of our reason for allowing ourselves to take this cab—even if it may not be at the forefront of our minds when doing so. We would instrumentalize the cab driver if we had reason to believe that he or she was driving us under duress and was sure to suffer from it.
Miller and Nelson (2006) is an exception, in the sense that the authors do connect development to one aspect of the enrollment procedure: assent. No evidence is offered, however, in support of the view that assent under some particular circumstances will make some particular kind of development probable enough not to have the children instrumentalized.
This point goes beyond Wendler’s somewhat similar observation (Wendler 2010 p. 92) that moral lessons might be learned precisely because the participating children are not the ones expected to benefit.
The idea is not, n.b., that children are instrumentalized as soon as the chosen treatment of them is suboptimal in relation to the available alternatives, but that evident large discrepancies between what is done for those children and what could instead have been done for them indicate the relevant kind of disrespect.
As we shall briefly elaborate in the next section, there might be good moral reasons for authorizing occasional instrumentalization, since there might be good moral reasons for giving parents the right to decide, within certain limits, what risks and burdens their own childen could be exposed to, and for allowing parents to fail to live up to some of their moral responsibilities. But those reasons for deferring to parents, as we shall emphasize, are not related to moral development in the way required by the moral development argument.
At a minimum, these will include the requirement that there are no available alternatives to involving children, that the risks are sufficiently low, and that there is parental consent. Additional requirements often imposed are the ones that the children assent to their participation, and that those intended to benefit belong to the same group as the research subjects (i.e., in this case, are children).
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Broström, L., Johansson, M. Involving children in non-therapeutic research: on the development argument. Med Health Care and Philos 17, 53–60 (2014). https://doi.org/10.1007/s11019-013-9486-0
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DOI: https://doi.org/10.1007/s11019-013-9486-0