Environmental justice emerged as a focus for the NIEHS under the leadership of Dr. Kenneth Olden. In 1994, the NIEHS established extramural funding for the Environmental Justice: Partnerships for Communication Program. The goal of the program is “to enable community residents to more actively participate in the full spectrum of research.” Toward this end, the grant application process required three-way partnerships among “a community organization, an environmental health researcher and a health care professional” who committed to work together “to develop models and approaches to building communication, trust and capacity, with the final goal of increasing community participation in the research process.”29 In 1995, the Institute launched the Community-Based Participatory Research (CBPR) Program to promote “active community involvement in the processes that shape research and intervention strategies, as well as in the conduct of research studies.” At the center of this program are community-university partnerships focused on environmental health research and interventions.30 Such collaborations have been complicated by the “inherent disparities in the relationships between a university and the communities that they study”; nonetheless, research conducted under the auspices of this program has contributed to activists’ efforts to document health problems in contaminated communities (Cable, Mix, & Hasting 2005: 68–69). In the context of the NIH, “where participatory research is weak to nonexistent,” the NIEHS’s approach provides a model for successful collaboration between activists and scientists (Brown 2007: 246-248).
In recent years, environmental health activists have become involved in scientific knowledge production, as a part of their advocacy efforts. For example, they may engage in techniques of popular epidemiology, a process in which concerned citizens systematically gather data about environmental health risks and illness in their community (Brown & Mikkelson 1994), or street science, the combination of local knowledge with professional scientific expertise (Corburn 2005). Often, these efforts are undertaken as a means of challenging the “dominant epidemiological paradigm” for a disease and demanding new resources for disease prevention or treatment; successful challenges to the dominant epidemiological paradigm are often the result of collaboration between environmental health activists and environmental health scientists (Brown 2007: 37). There are many obstacles to citizen-scientist collaborations, not the least of which is that many environmental activists are committed to the idea that science is not the only legitimate form of expertise in the domain of environmental health and illness (Corburn 2005: 37–40). However, there are an increasing number of examples of collaborations between environmental health activists and sympathetic scientists in formulating hypotheses about the environmental causation of illness in a community (Brown 2007: 37; see also Allen 2003; Sze 2007). Some have suggested that, over time, these collaborations may produce “ruptures” in scientific practices—and institutions—thereby creating opportunities for the transformation of environmental health research (Ottinger & Cohen 2011).31
Environmental health and justice activists have also challenged the risk assessment paradigm, suggesting that the precautionary principle would provide better protection (Brown, Mayer, & Linder 2002; Tickner 2003). There are two general versions of the precautionary principle; the strong version states that no action should be taken unless there is full certainty that it will do no harm, and the weak version states that “lack of full certainty is not a justification for preventing an action that might be harmful” (Morris 2000: 1). In regard to environmental regulation, the precautionary principle approach would require that “suspect substances must be held off the market until their potential dangers are more clearly understood and their safety is better established” and would support regulatory action “even before the existing data absolutely prove danger” (Markowitz & Rosner 2002: 6). Proponents of the precautionary principle point out that uncertainties inherent in the scientific risk assessment processes have been used to contest or forestall regulation, such that industrial interests may invest in research specifically intended to “insinuate ambiguity” (Proctor 1995: 102; see also Jasanoff 1990); calls for regulatory delays on the grounds of insufficient and/or incomplete evidence “are a regular part of the PR package of the tobacco, petrochemical, and other industries . . . the net effect is to shift the focus from the need to eliminate a probable hazard to the need to resolve a certain ambiguity” (Proctor 1995: 130). At stake in these debates is the best means of protecting public health.
MECHANISMS OF CHANGE
Collectively, the dynamics among environmental health scientists, regulators, activists, and industry mean that the environmental health sciences fundamentally differ from sciences in which controversy may be concealed within a “core set” of deeply involved researchers (Collins 1985). In contrast, domains of contention, knowledge gaps, and sources of uncertainty within the environmental health sciences are both defined and publicized by the contentious politics of the environmental health arena and its myriad stakeholders.32 These dynamics have profoundly shaped the foci and pace of research at the NTP and NIEHS: “This [dynamic] is very different than . . . [at] most of the other NIH institutes and extramural constituencies, because they can do their research via the classical scientific approach and don’t have this sort of overriding pressure for validation/precision on a short time-frame” (Interview S27). As such, environmental health scientists report that they are strongly motivated to strengthen the certainty and, related, the legitimacy of their research. In contrast to other scientists, environmental health researchers must not only produce knowledge that will meet the standards of their scientific peers, but also ensure that it is robust to both technical and legal challenges by outside parties. Beginning in the 1980s, environmental health scientists began to consider how studying environmental exposures at the molecular genetic level might serve as a means to these interrelated ends.
In some ways, it is unsurprising that environmental health scientists would turn to research on molecular mechanisms of environmental illness as a means of strengthening the certainty and legitimacy of their research. As early as the 1980s, the NTP came under pressure to develop its research on the molecular mechanisms behind responses to environmental chemicals.33 In 1984, the NTP Board of Scientific Counselor’s Ad Hoc Panel on Chemical Carcinogenesis Testing and Evaluation Report recommended that the National Toxicology Program “establish a goal of better understanding mechanisms by developing a battery of short term tests that measures the widest possible number of endpoints (including promotion, transformation, and chemical interaction with oncogenes)” (NTP 1984: 92). Then, again, in 1992, a scientific review panel convened to evaluate the NTP reported that the program “places too much emphasis on testing per se” and not enough on understanding underlying mechanisms through which exposures to specific substances cause adverse outcomes (Stone 1993). “Developing and applying tools of modern toxicology and molecular biology” became part of the official mission of the NTP (NTP 2002, 2, emphasis added). As one scientist recalled, there was concern that, unless it found ways to incorporate molecular genetic techniques, “the NTP would be a toxicology program of only historical interest” (Interview S32).
At this time, there was a burgeoning interest in genetics across the life sciences. By the 1990s, molecular genetics and genomics were at the apex of biomedical research in the United States. The power of genetic explanations for human health and illness was manifest in massive public investiture in the Human Genome Project (HGP), as well as in policy debates, popular