1Introduction
A Legacy of Neglect
In August 2001, the Court of Appeals of Maryland, that state’s highest court, handed down a strongly worded, even shocking opinion in what has become one of the most contentious battles in the history of public health, a battle that goes to the heart of beliefs about what constitutes public health and what our responsibility to others should be. The court had been asked to decide whether or not researchers at Johns Hopkins University, among the nation’s most prestigious academic institutions, had engaged in unethical research on children. The case pitted two African American children and their families against the Kennedy Krieger Institute (KKI), Johns Hopkins’s premier children’s clinic and research center, which in the 1990s had conducted a six-year study of children who were exposed by the researchers to differing amounts of lead in their homes.
Organized by two of the nation’s top lead researchers and children’s advocates, J. Julian Chisolm and Mark Farfel, the KKI project was designed to find a relatively inexpensive, effective method for reducing—though not eliminating—the amount of lead in children’s homes and thereby reducing the devastating effect of lead exposure on children’s brains and, ultimately, on their life chances. For the study, the Johns Hopkins researchers had recruited 108 families of single mothers with young children to live in houses with differing levels of lead exposure, ranging from none to levels just within Baltimore’s existing legal limit, and then measured the extent of lead in the children’s blood at periodic intervals. By matching the expense of varying levels of lead paint abatement with changing levels of lead found in the blood, the researchers hoped to find the most cost-effective means of reducing childhood exposure to the toxin. Completely removing lead paint from the homes, Chisolm and Farfel recognized, would be ideal for children’s health; but they believed, with some justification, that a legal requirement to do so would be considered far too costly in such politically conservative times and would likely result in landlord abandonment of housing in the city’s more poverty-stricken districts.
Despite the intentions of KKI researchers to benefit children, the court of appeals found that KKI had engaged in highly suspect research that had direct parallels with some of the most infamous incidents of abuse of vulnerable populations in the twentieth century. The KKI project, the court argued, differed from but presented “similar problems as those in the Tuskegee Syphilis Study, . . . the intentional exposure of soldiers to radiation in the 1940s and 50s, the test involving the exposure of Navajo miners to radiation . . . and the secret administration of LSD to soldiers by the CIA and the army in the 1950s and 60s.” The research defied many aspects of the Nuremberg Code, the court said, and included aspects that were similar to Nazi experimentation on humans in the concentration camps and the “notorious use of ‘plague bombs’ by the Japanese military in World War II where entire villages were infected in order for the results to be ‘studied.’”1 More specifically, the court was appalled that many of the children selected for the study were recruited to live in homes where the researchers knew they would be exposed to lead and thus knowingly placed in harm’s way. Children, the court argued, “are not in our society the equivalent of rats, hamsters, monkeys and the like.”2 The court was deeply troubled that a major university would conduct research that might permanently damage children, given what was already known about the effects of lead.
How could two public health researchers who had devoted their scientific lives to alleviating one of the oldest and most devastating neurological conditions affecting children be likened to Nazis? Was this just a “rogue court,” an out-of-control panel of judges, as many in the public health community would argue? These were the questions that initially drew our attention. We soon became aware, however, of the much more complex and troubling story underlying the case, about not just the KKI research but also the public health profession, the nation’s dedication to the health of its citizens in the new millennium, and the conundrum that we as a society face when confronting revelations about a host of new environmental threats in the midst of a conservative political culture. In its ubiquity and harm, lead is an exemplary instance of these threats. Yet there are many others we encounter in everyday life that entail similar issues, from mercury in fish and emitted by power plants to cadmium, certain flame retardants, and bisphenol A, the widely distributed plastics additive that has been identified as a threat to children.3
For much of its history, the public health field provided the vision and technical expertise for remedying the conditions—both biological and social—that created environments conducive to harm and within which disease could spread. And throughout much of the profession’s history, public health leaders have joined with reformers, radicals, and other social activists to finds ways within the existing political and economic structures to prevent diseases. Although the medical profession has often been given credit for the vast improvements in Americans’ health and life span, the nineteenth- and early-twentieth century public health reformers who pushed for housing reforms, mass vaccination campaigns, clean water and sewage systems, and pure food laws in fact played a major role in improving children’s health, lowering infant mortality, and limiting the impact of viral and bacterial diseases such as cholera, typhoid, diphtheria, smallpox, tuberculosis, measles, and whooping cough. In the opening years of the twentieth century, for example, Chicago’s public health department joined with Jane Addams and social reformers at Hull House to successfully advocate for new housing codes that, by reducing overcrowding and assuring fresh air in every room, led to reduced rates of tuberculosis. And New York’s Commissioner of Health Hermann Biggs worked with Lillian Wald and other settlement house leaders to initiate nursing services for the poor, pure milk campaigns, vaccination programs, and well-baby clinics that dramatically reduced childhood mortality. Biggs, Addams, and other Progressives worked from a firm conviction that as citizens we have a collective responsibility to maintain conditions conducive to every person’s health and well-being.
These broad public health campaigns to control infectious diseases yielded great victories from the 1890s through the 1930s. But with the first decades of the twentieth century, a different view of the profession began to gain ascendancy, redefining the mission of public health in ways that belied its role as an agent of social reform. In 1916 Hibbert Hill, a leading advocate of this new direction, put it this way: “The old public health was concerned with the environment; the new is concerned with the individual. The old sought the sources of infectious disease in the surroundings of man; the new finds them in man himself. The old public health . . . failed because it sought [the sources] . . . in every place and in every thing where they were not.”4 In this view, the idea was for the fast-growing science of biological medicine to concentrate on treating disease person by person rather than on eradicating conditions that facilitated disease and its spread, in some cases encouraging reforms in behavior to reduce individual exposure to harm. Hence, like numerous other fields in the early decades of the century, public health became professionalized, imbuing itself with the aura of science and setting itself off as possessing special expertise.
By the middle decades of the twentieth century, public health officials thus typically conceived of their field mainly as a laboratory-based scientific enterprise, and many public health professionals saw their work as a technocratic and scientific effort to control the agents that imperiled the public’s health individual by individual.5 We can see this shift in perspective in treating tuberculosis, for example. An infectious disease that terrified the American public in the eighteenth and nineteenth centuries, tuberculosis had begun to decline as a serious threat by the early twentieth century, mainly because of housing reforms, improvements in nutritional standards, and general environmental sanitation. By midcentury, public health officials tended to downplay such environmental conditions and came to rely instead on the armamentarium of new antibiotic therapies to address the relatively small number of tuberculosis victims. The history of responding to industrial accidents and disease offers another example. In the early years of the twentieth century, reformers such as Crystal Eastman addressed the plague of industrial accidents and disease in the steel and coal towns of Pennsylvania by advocating for higher wages, shorter hours, and better working conditions through unionization. By the 1950s, industrial disease and accidents had largely faded from public health view—ironically,