Moral Grounding for the Participation of Children as Organ Donors

Novello Antonia M.D. “From the Surgeon General, U.S. Public Health Service” in Journal of the American Medical Association. Volume 267, no. 2 (January 8, 1992), p. 213.

The empirical data refutes the assumption that all children are incompetent. This data is well summarized in two review articles: “Minors' Consent to Treatment: A Developmental Perspective” by Thomas Grisso and Linda Vierling in Professional Psychology, Vol. 9. (August 1978), pp. 412–27; and “The Competency of Children and Adolescents to Make Informed Treatment Decisions” by Lois Weithorn and Susan Campbell in Child Development, Vol. 53 (1982), pp. 1589–98. The law acknowledges that some minors are competent and capable of giving informed consent, a fact which it has codified in mature minor and emancipated minor statutes. These statutes were designed to promote the minor's best interest in therapeutic health care. The statutes allow the minor to consent to medical treatment for medical illnesses which might be overlooked or delayed if the minor's privacy were not guaranteed. These statutes do not cover nontherapeutic health care, and since there is no medical benefit to organ donations, the arguments which justify these statutes in therapeutic health care are invalid in the nontherapeutic domain. In fact, even if a child is competent, the concept of family autonomy endorses a role for requiring parental permission. I discuss this further in the fifth section, below. Nevertheless, a child's competency should influence his role in the donation decision-making process. Specifically I argue that only competent children should be allowed to participate in donations of significant risk; and then only with their assent and their parents' permission.

Even if the child is competent to give informed consent, one could still require parental authorization under the notion of family autonomy (See Part V). Thus, even the competent child's autonomy would not be adequate to justify his participation as an organ donor.

Even if the child is competent to give informed consent, one could still require parental permission under the notion of family autonomy. (See Part V.) Thus, even the competent child's autonomy would not be adequate to justify his participation as an organ donor.

Schoeman Ferdinand , “Rights of Children, Rights of Parents, and the Moral Basis of the Family” in Ethics Volume 91, no. 1. (October, 1980), p. 8.

Ibid., p. 50.

Schoeman Ferdinand , “Parental Discretion and Children's Rights: Background and Implications for Medical Decision-Making” Journal of Philosophy and Medicine. Vol 10 (1985), p. 48.

Veatch Robert M. , “Limits of Guardian Treatment Refusal: A Reasonableness Standard” in American Journal of Law and Medicine, Volume 9, no. 4 (1983), pp. 427–68.

I will expand this argument in section six, below, to require an intimate relationship between the authorizing parents, the child-donor and the recipient.

Actually, in the intimate setting, one does not usually talk about rights. Rather rights are usually asserted only when the family as an intimate unit disintegrates—say for example, because of abuse, neglect, or abandonment. For example, when adults divorce, they no longer talk about subordinating their personal interests to the marriage; but rather the individuals assertt their personal interests—what is best for me as an independent agent. Since minors are felt incapable of asserting their own self-interest, the state must assure that the child's personal interests are advanced, either through judicial or legislative means. So, for example, if the intimate parent-child bond is broken due to abuse, the parent should no longer be allowed to supress the child's own interests to promote a collective family goal. Rather the state must intervene to promote the child's objective best interest.

Brody Baruch , Life and Death Decision Making. New York: Oxford University Press, 1988, p. 34.

Ibid., p. 57.

See, National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Report and Recommendations: Research Involving Children. September 1977, pp. 1–20 and the Federal Regulations Part 46 CFR as amended by adding a new subpart D: “Additional Protection for Children Involved as Subjects in Research” Federal Register Volume 48, no. 46. March 8, 1983, pp. 9818–20.

Blustein Jeffrey , Parents and Children: The Ethics of the Family. New York: Oxford University Press, 1982, p. 117.

The regulations require the assent of all children when feasible; that is, the assent of all children who “in the judgement of the IRB…are capable of providing assent” (Fed. Reg. 46.408). The Regulations do not give a specific age although they acknowledge that the empirical research would support the ages of seven or twelve. The report by the National Commission recommended the age of seven years. (See National Commission, page 16.)

The National Commission's recommendations for the participation of children in research classified research involving children into four broad areas depending on risks and benefits. The four broad areas are: 1. research involving no or minimal risk and harm; 2. research involving a minor increase over minimal risk or harm that presented possible direct benefit to the subject; 3. research involving a minor increase over minimal risk and harm that presented no direct benefit to the subject; and 4. research involving more that a minor increase over minimal risk and harm, i.e. significant risk or harm. For the purpose of this paper, I am only interested in the three categories of research that do not present a possible direct benefit to the subject, that is, areas 1, 3, and 4.

Organ donations can be classified into categories based on risk: minimal (low) risk, a slight increase over minimal risk (moderate risk), and significant risk. The distinctions will depend on such factors as the procedural risks that the harvesting entails (e.g. the type of anesthesia), the reversibility of the donation (e.g. bone marrow replenishes in several months whereas a kidney is never regenerated), and the long-term morbidity.

The donation of a pint of blood would be classified as a donation of minimal risk. At most the donation entails the risk of a small hematoma (ecchymosis) and feeling slightly fatigued. The risk of long-term sequelae are negligible as blood replenishes itself in several weeks.

Bone marrow donations would be classified as a slight increase over minimal risk. The greatest risks of bone marrow donation lies in the need to undergo general anesthesia which, presently, has less than one in 10,000 risk of serious morbidity and mortality. The aspiration can require over 100 attempts with a long needle into different bone sites in the body. The risk of long-term sequelae are small because bone marrow replenishes itself in several months. Nevertheless the donor is at some risk from anemia and neutropenia for several months until the bone marrow is replenished. There is also a small risk that underlying nerves will be injured during the harvest.

Kidney donations would fit into the category of significant risk because of the seriousness of the surgical procedure and especially in light of some data from the 1980s which suggest that long-term morbidity of unilateral nephrectomy may be greater than previously supposed (because of hypertension). See for example Anderson C.F. . “The Risks of Unilateral Nephrectomy: Status of Kidney Donors 10 to 20 Years Postoperatively, in Mayo Clinic Proceedings. Volume 60 (June, 1985), pp. 367–74., Miller “Impact of Renal Donation: Long-term Clinical and Biochemical Follow-up of Living Donors in a Single Center” in The America Journal of Medicine. Vol. 79 (August, 1985), pp. 201–8., and Dunn “Living Related Kidney Donors: A Fourteen Year Experience” in Annals of Surgery. Volume 30, no. 6 (June, 1987), pp. 637–43.

See Fed. Reg. 46.407.

See the studies by Grisso and Vierling and Weithorn and Campbell, op. cit.

Justice Powell writing for the majority in Bellotti v. Baird 332 U.S. 622 (1979) as cited in Mnookin Robert and Weisberg D. Kelly , Child, Family and State. Boston, Mass: Little, Brown and Company (1989), p. 163, footnote 23. The empirical data supports Powell's claim: Giving adolescents the choice, for example, to quit school may be desirable for the minors in the short run but leads to long term deprivations in opportunities. See the data presented by Laura Purdy, In their Best Interest? The Case against Equal Rights for Children. New York: Cornell University Press, 1992.

See Purdy, supra note 19.

These regulations are incorporated into two types of statutes: mature minor statutes and specialized consent statutes. The scope of these statutes varies state-by-state. For an excellent review, see Eric Engum, “Expanding the Minor's Right to Consent to Non-Emergency Health Care,” Journal of Legal Medicine. Volume 3, no. 4 (1982), pp. 557–615.

Ibid.

I suspect that many physicians and ethicists will not be sympathetic to this conclusion. I believe our disagreement is not in the theoretical argument but in its practical implications. The problem is that we both think the parents are wrong in prohibiting their child from serving as a low-risk donor. But just as we do not interfere with cultural and religious values which may seem irrational or even wrong, unless they risk serious morbidity or mortality to the child herself, so should we respect this aspect of parental discretion. Either children are subject to parental authority in discretionary arenas or they should be emancipated from all parental constraints. For the dangers likely in the latter movement, see Laura Purdy, op. cit.

The age of seven is an empirical choice, reflecting the data op. cit. and the recommendations of the National Commission.

One can argue that deep friendship should also be allowed to justify a child's participation. The fact is that histocompatibility is proportionately related to blood-lineage and so friends are often histocompatible strangers. (To the extent that our friends are of similar racial, ethnic, and religious backgrounds, we may be more histocompatible with a friend than with a foreign stranger, but probably not enough to make a difference especially with the newest generation of immunosuppressive drugs.) Thus, it would seem that there would be little advantage in using a child rather than her parents. Nevertheless, one could hypothesize a scenario where organ size was of issue. Principle One could be expanded to incorporate this intimate relationship, but I would want some sort of overview for these donations to prevent potential exploitation. That is, one could develop a Transplant Review Board along the lines of Institutional Review Boards (IRBs) which serve to review the efficacy, necessity and safety of human experimentation.

This hierarchy is typical of judicial decisions. See, for example, Strunk v. Strunk 445 S.W. 2d 145 (Ky 1969), Hart v. Brown 29 Conn. Supp. 368, 289 A.2d 386 (Super. Ct. 1972), and Little v. Little 576 S.W. 2d 493 (Tex 1979). Of note is that the Supreme Court of Wisconsin refused a donation by an incompetent adult sibling because there were adult competent siblings in the family whose histocompatibility had not been tested. See Lausier v. Pescinski 67 Wisc. 2d 4, 226 N.W. 2d 180 (Wisc 1975).

If there are biological factors which differentiate children as a class from adults as a class which would make adults unsuitable experimental models, then validation in animal studies alone would be sufficient.