Memorial Fund supported the review process, which has been critical in making this a stronger historical work. We particularly thank Carmen Hooker Odom, president of Milbank, for her enthusiastic support.
Our two primary editors, Hannah Love at the University of California Press and Jonathan Cobb, one of the premier scientific editors in the country, deserve special thanks. Hannah was an unflagging supporter of this project from its inception and navigated the review process with thoughtful expertise. We cannot praise Jonathan enough for his extraordinary skill as a knowledgeable and thoughtful reader, critic, and editor. It was clear to us at many moments that he “knew” this book as well as we did and was able to bring out our work in a broader context of science politics because of his vast reading and commitment over the decades to science, environmentalism, and social justice. He read and commented on too many drafts to even count and improved this manuscript immeasurably. Recently, Naomi Schneider at the University of California Press has enthusiastically assumed editorial responsibility for our book, and Julie Van Pelt has expertly copyedited the manuscript with grace and warmth.
Finally, we want to thank various family friends who have lived through our obsession with lead, poisons, and our endless stories about the children and families whose lives were changed by lead: Jane Bond, Blanche Wiesen Cook, Clare Coss, Steve Curry, Julie List, Annie Meeropol, Elli Meeropol, Michael Meeropol, Robby Meeropol, Michael Penland, Pennee Bender, Steve Safyer, Paula Marcus, Josh Freeman, Debbie Bell, Maddy deLone, Bobby Cohen, Dennis Sherman, Pat Sherman, Dinitia Smith, Beverly Lewis, Bill Lewis, Lisandro Perez, and Liza Carbajo.
Of course, our families were, as always, patient and loving. Adrienne Markowitz and Ruth Heifetz have devoted their professional lives to improving the health of the society. Our children and grandchildren fill us with pride: Billy and Toby Markowitz, Elena and Steve Kennedy, Anton and Isa Vasquez, Zachary and Molly Rosner, Emilie FitzMaurice, and Mason and Ceci Kennedy.
Finally, we want to thank Kathy Conway and Andrea Vasquez. They both know how much we love them for their warmth, intelligence, and patience with these two old guys.
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
