American health care, and the political and legal milieu in which it exists, is oriented heavily toward autonomy or self-governance. A competent person has a nearly absolute right to decide what shall be done to his or her own body, according to a U.S. Supreme Court decision made 80 years ago. Any touching done without consent, by a doctor or anyone else, is battery. Consent can justify touching, but only if it is meaningful consent, requiring at least that it be informed and uncoerced. The legal requirements for informed consent reflect the widely shared moral belief that individuals should be free to make their own decisions, however foolish they may be.

These principles apply to competent patients. The definition and boundaries of competence are controversial, but clearly exclude many, if not most, children. For such individuals, others must be entrusted with the authority to make decisions on their behalf. This is called paternalism, interfering with someone’s liberty on the grounds that it is in his interest. To be justified, paternalism requires that the interference be such that the individual plausibly would agree with it if he had a moment of lucidity and could see the issue clearly. Given this condition, imposing health care on people simply on the grounds that it is good for them is not sufficient. If that were the case, consent would be unnecessary.

What are the implications of these principles for pediatrics? For those older adolescents who resemble adults more than they do children (i.e., who would meet standard notions of competence), consent is necessary and sufficient for providing health care for the same reasons that apply to other competent patients. For infants and most young children, who would not meet any common notion of competence, proxy consent, motivated by paternalistic impulses, provides a sufficient basis on which to intervene with standard therapeutic interventions. For children between these extremes, who have an evolving capacity to understand the nature and implications of proposed interventions, a growing claim can be made for involving them in the decision-making process.

Since the 1970s, no single ethical issue has preoccupied American pediatrics more than the controversy surrounding the withholding of life-sustaining treatment from handicapped or seriously ill newborns. The practice of allowing such infants to die, or even killing them, is thousands of years old, but it became a national debate in the early 1970s with the public disclosure that routine, standard treatment, such as the repair of duodenal atresia, commonly was withheld from infants with birth defects such as Down syndrome. The death of “Baby Doe” in 1982, resulting from untreated esophageal atresia and Down syndrome, triggered a federal statute and regulations requiring that all infants be given medically beneficial treatment, regardless of handicap, unless they are comatose or their death is imminent. The application of these regulations to specific cases, in theory and practice, is controversial.

Whatever the merits or effects of the legal response, the Baby Doe debate appeared to cause a shift in consensus on a fundamental ethical point: that the value to be maximized in considering whether to give or withhold treatment should be the best interest of the infant. This replaced previous notions that parents’ wishes should predominate and earlier efforts to rely on distinctions between ordinary and extraordinary means as a basis for making decisions. The “best interest” standard left open questions of how and by whom these interests should be defined and ascertained. In these matters, too, a consensus has been growing. In theory and practice, broad agreement exists that multidisciplinary consultations are more likely to result in ethically sound decisions than would be made by parents and personal physicians making decisions in private. Hospital ethics committees now are used widely to help resolve controversial cases and, in fact, are required (or some similar mechanism) by the Joint Commission on Accreditation of Hospitals. These committees typically do not make decisions, but strive to facilitate consensus among providers and parents. One of their most important functions appears to be improving the factual basis for decisions. Good ethics starts with good facts; many of the most controversial Baby Doe decisions were predicated on inadequate information, which could have been corrected if a more deliberate and collaborative process had been used.

Screening can be defined as the search for occult disease or the potential for disease to develop in a defined population. The purpose may be treatment [e.g., newborn screening for phenylketonuria (PKU)], counseling (e.g., testing for carrier status for sickle trait or Tay-Sachs disease in a sexually active adolescent), or research. As with all interventions, benefits should be established and shown to be commensurate with risks before application is made to broad populations. The harms of screening usually are indirect and, therefore, under-recognized. These harms can be organic, such as when a positive test result leads to harmful treatment. This occurred in the early days of widespread PKU testing, when the significance of elevated serum phenylalanine was unknown and the toxicity of a low-phenylalanine diet was not fully understood. Many children were labeled incorrectly as having PKU and were harmed by the diet. Harms more commonly are psychosocial, a result of labeling and stigmatization. This was widespread when sickle cell screening caused parents of carriers to believe falsely that their children had a fatal condition or reduced the children’s access to life and health insurance.