May Parents or Others Permit Children or Incompetent Older Persons To Be the Subjects..

William E. May
© 2010 Culture of Life Foundation.
Reproduced with Permission
Culture of Life Foundation

It is not uncommon for parents of children or the care-givers responsible for older but incompetent persons to be asked by their doctors to allow these "voiceless"1 subjects to take part in "non-therapeutic" experiments, i.e., experiments that are not designed to be of benefit to the children or incompetent persons but rather to gain knowledge that may be of great benefit to others. Such permission is called "proxy" or "surrogate" consent.

While there is no serious debate among authorities - ecclesiastical, moral, medical, and legal - that proxy or surrogate consent can be justified when the procedure in question is therapeutic, i.e., intended for the benefit of an incompetent or "voiceless" subjectfs own life and health, there is a debate among some regarding the justifiability and limits of "proxy" consent. Some ethicists argue vigorously that such consent is never morally permissible because in their judgment it treats the child or incompetent person not as a child or incompetent person but as an object to be used by others to attain their own goals.2 I have come to believe that such consent is morally justifiable under certain conditions. I will present them here and also offer reasons why I think the expression "proxy consent" is misleading and what I think permission of children and other voiceless persons really is.

The Justifiability of "Proxy Consent" in the Non-therapeutic Situation

The basic claim justifying such consent is that it is not unreasonable - and therefore not contrary to objective moral standards - if parents, for instance, were to allow experimentation involving their children for the benefit of others if the experiment involves no significant risk. After all, parents frequently take their children, including babies, on automobile trips not undertaken for their benefit (e.g., to purchase some clothes for the mother or visit a friend of the father), and such journeys surely involve some risks, but, after all, risks of this kind are acceptable both for oneself and for those for whom one cares. Numerous examples of this could be given. But if it is not wrong for parents to act in this way in exercising responsible stewardship of their children, why would it be always immoral for them to consent to have their children participate in non-therapeutic research/experimentation?

I believe that a passage from Germain Grisez is helpful here. "People making decisions for someone who is not competent - for instance, parents for a child - may not accept any significant risk (that is, any risk beyond the level of lifefs common risks) to a dependentfs health for the sake of an experimentfs possible benefit to others. For parents and others in charge of the noncompetent have a special responsibility to act in their personal interests, not to subordinate them to others. Nor can such subordination of a dependentfs interests be an act of mercy [on behalf of other persons], since mercy is self-sacrifice, not imposing sacrifice on someone for whom one is responsible.3

I now call attention to some important features of Grisezfs presentation. First of all, he offers a clear definition/description of "significant" risk. He identifies as "significant" a risk that is "beyond the level of lifefs common risks" - examples of "common risks" are such risks as riding in an automobile, crossing a street, etc. In general, "common risks" are those that parents commonly take for their children when they have their children accompany them in a host of activities that are not intended to be of any direct benefit to the children themselves. Grisez thus provides us with a clearly defined criterion to help us determine whether a risk is "significant." Obviously, however, application of this criterion varies widely, depending on social/cultural conditions. Thus what constitutes a "significant" risk in Manhattan, N.Y. would seem to be different from what constitutes "significant" risk in, say, Wagga Wagga, Australia, or Jasper, Indiana.

Second, Grisez clearly believes that such parental consent in no way "subordinates" their children to the interests of others since he rejects such subordination. When conditions warrant parental consent (or consent by other guardians) to participation by those entrusted to their care in non-therapeutic experimentation such consent is given in fidelity to the trust given them to protect the inviolable personal dignity of the non-competent persons for whose well-being they are responsible. Moreover, he explicitly rejects the claim that such subordination can be "an act of mercy, since mercy is self-sacrifice, not imposing sacrifice on someone for whom one is responsible."

The Meaning of "Proxy" Consent

I think that "proxy" consent here is a misnomer, since the potential subjects are, precisely because they are non-competent, "voiceless" persons, incapable of giving consent, and no one should presume to give consent for them. The "consent" given is the personal consent of the parents or guardians of voiceless persons to permit those for whom they have a grave responsibility to participate in non-therapeutic experimentations if, and only if, such experimentations pose no "significant" risk, promise some real benefit, and cannot be carried out on other subjects. I also believe that children who have reached the "use of reason" can make free and informed decisions, and that, if so, parents ought to give their children sufficient information for them to make a free and informed choice in the matter and to answer any of their concerns and to retain veto power over their childrenfs choices in this matter when they judge this necessary. They can do so because we can assume that their lived experience allows them to make judgments that are "prudent" in the sense of being informed and aware of relevant factors of which young children are ignorant.


1 The great Protestant ethicist Paul Ramsey used the term "voiceless patients" to describe children and other incompetents dependent upon others for their care in his essay, "A Reply to Richard McCormick: The Enforcement of Morals: Nontherapeutic Research on Children," Hastings Center Report, 6.4 (May 1976),21-23. [Back]

2 Ramsey was one of the leading representatives of this position. See for instance his article noted already. I also championed this position in my 1977 book Human Existence, Medicine, and Ethics: Reflections on Human Life (Chicago: Franciscan Herald Press, 1977), pp. 21-39, but I have since changed my mind. [Back]

3 Germain Grisez, The Way of the Lord Jesus, Vol. 2, Living a Christian Life (Quincy, IL: Franciscan University Press, 1993), p. 534, emphasis added. [Back]