4

Science Literacy for Communities

It is impossible to understand how science literacy affects a society without examining the emergence and importance of science literacy in the communities that comprise it. In Chapters 1 and 2 we outlined an overarching perspective in which science literacy emerges, and can usefully be studied, at multiple levels of social organization. In this chapter we expand on the idea that science literacy can be developed, possessed, and used by communities. The committee reviews the research on such communities with three guiding questions in mind: What are the characteristics of such communities? Do they display community-level science literacy? Is there evidence that they contribute to scientific knowledge and, if so, under what conditions?

We examine community-level science literacy through examples of communities that accomplish various goals, by virtue of their collective literacy, that cannot be easily attributed to the actions of any particular individual.¹ Science literacy in a community does not require each individual to attain a particular threshold of knowledge, skills, and abilities; rather, it is a matter of a community having sufficient shared resources that are distributed and organized in such a way that the varying abilities of community members work in concert to contribute to the community’s overall well-being (e.g., Dewey, 1927; Roth and Lee, 2002; Ownby et al., 2014).

We define community broadly. Some communities are bound together by

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¹Health literacy researchers have also argued that successful community health outcomes rely on the collective effects of individuals’ knowledge to foster improvement in health status for populations. Nussbaum (2000) argues that a key health goal for a community is to have people who have the capacity to firmly advocate for and to act in the best interest for the public good.

place or identity. Some could be described as “communities of practice,” that is, groups of people whose mutual involvement have given rise, over time, to shared routines, activities, and goals, the value of which is understood in similar ways by all members (Lave and Wenger, 1991; Wenger, 2000). For the purposes of our analysis, communities are groups of people who are functionally interconnected in a way that enables exchange of information and are typically defined by shared goals and interests. However, we stress that many such communities are more loosely organized, more heterogeneous, and more transient than the archetypal community of practice.

It is important to note that communities need not be tied to particular geographic places. The examples of cities or localities as communities presented in this chapter reflect just one construction of a community; evolving communication technologies allow people from all over the world to exchange information and to connect with others on issues of interest and relevance to them (Brossard and Scheufele, 2013). The pervasiveness of Wikipedia and social media platforms, for example, encourages the formation of communities that span geographic boundaries.

The committee has also chosen, in this chapter, to treat science literacy and health literacy together. In particular cases, a community’s experience of health and illness often drives engagement with health systems, which leads to questions about the underlying science: if and when those questions are answered, the answers are often applied to the same set of health systems. It is conceivable that a community’s capacity to interact with health systems is concentrated in certain individuals or subgroups in the community, while its capacity to understand and contribute to science is concentrated in other individuals or subgroups, but, to date, no data specifically address this claim.

ORGANIZING AROUND SCIENCE AND HEALTH ISSUES

In his groundbreaking work on AIDS treatment activism, Steven Epstein (1995) offered an account of how a group, most of whose members (initially) possessed little formal knowledge of science, went about developing expertise in an emerging and contested research field. Alarmed at the rapid progress of the disease and high mortality rates, AIDS activists developed scientific knowledge (including an understanding of scientific practices) to demand modifications to drug-testing procedures and to the Food and Drug Administration’s drug approval policies; working together, they successfully advocated for alternatives to the placebo-control protocol for clinical trials (previously a cornerstone of biomedical procedures) in order to expedite the delivery of drugs to consumers in what can be characterized as health emergencies.

The activist, science-savvy, and ultimately influential community that organized itself around AIDS treatment and research had many advantages that no doubt contributed to its success. Epstein (1995, p. 415) notes that “the gay

community had pre-existing organizations that could mobilize to meet a new threat, and it mattered that these communities contained (and in fact were dominated by) white, middle-class men with a degree of political clout and fund-raising capacity unusual for an oppressed group.” The community was able to acquire credibility in certain domains of scientific practice because biomedicine (in comparison with other areas of science and technology) was relatively open to outside scrutiny, and participation in clinical trials gave members of the community a unique and valued perspective on the treatment process. That is, the community was socially positioned to challenge the status quo and had unique access to the particular realm they hoped to affect.

The AIDS activism documented by Epstein is just one notable example of a social movement for which some science literacy was crucial. Social movement research is a well-established field that has recently turned its attention to the intersection of science, technology, and health with social and political advocacy. This field is now home to an increasing number of research programs that are studying science literacy at the community level.

A related phenomenon is popular epidemiology, first defined in the early 1990s by sociologists studying communities with unusually high incidence of cancer linked to industrial pollution (Brown, 1992; Allen, 2003). Phil Brown, the researcher who coined the term, describes popular epidemiology as community-based activists working together to “detect and act on environmental hazards and diseases,” a process that requires them to “gather scientific data and marshal the knowledge and resources of experts” (Brown, 1993, p. 18).

In Brown’s first well-known account of popular epidemiology, a group of families in Woburn, Massachusetts, “confirmed the existence of a leukemia cluster and linked it to industrial chemicals that were infiltrating their public water supply” (Brown, 1993, p. 17). Using ethnographic data, Brown describes how the Woburn families identified a problem in their community (high rates of cancer) and used their collective resources to develop scientific knowledge (including an understanding of scientific practices and judging appropriate scientific expertise) to address that problem.

Not all studies of community-based science literacy focus on health topics. In participatory environmental monitoring (also called “community-based monitoring”) community groups collect data to monitor environmental systems. Kinchy and colleagues (2014, p. 260) note that “from the venerable Audubon Christmas Bird Count to the recent phenomenon of ‘hacker’ or DIY water testing kits, diverse publics are engaging in work to monitor and measure changes to the environments in which they live.” Hundreds of thousands of such community groups have formed around the world (Pretty, 2003; Conrad and Hilchey, 2011). In New York and Pennsylvania alone, dozens of community groups are engaged in monitoring the effects of “fracking” on local watersheds

(Kinchy et al., 2014).² In many parts of the world, community coalitions have used relatively simple, homemade air quality monitoring devices to produce surprisingly reliable measurements and hold industrial and agricultural polluters to account (Conrad and Hilchey, 2011; O’Rourke and Macey, 2003). Although such work is not new, it is becoming increasingly common and has increasingly been the subject of study over the past two decades (Conrad and Hilchey, 2011).

These bodies of research reveal that intensive community-level engagement with science is surprisingly common; taken together, they provide an empirical foundation for conceptualizing science literacy at the community level.

SCIENCE-LITERATE COMMUNITIES

Although the above examples are compelling in their own right, the question that concerns us here is to what extent the communities formed to pursue social activism, popular epidemiology, or participatory environmental monitoring can be characterized as science literate. The evidence is compelling that the success of these communities in promoting policy changes and other outcomes depends, at least in part, on their ability to develop knowledge of science- and health-related issues, as well as knowledge of general scientific practices, and on their capacity for sophisticated interaction (both internally and externally) with scientists and health professionals, scientific institutions, and health systems. For example, Kaplan (2000, p. 75) reports that activists in communities around the Hanford nuclear facility in Washington “became well educated on science and technical issues of radiation health effects, Hanford operations, and nuclear waste storage.” Epstein (1995, pp. 417-418) offered a compelling account of how AIDS activists developed knowledge in support of their goals:

Some community groups replicate particular techniques and practices that professional scientists use in their work. Kinchy and colleagues (2014, p. 278) note that “civil society organizations in the field are typically aware of the scientific standards that academic and regulatory scientists use in their analysis of water quality, and many seek to align their own monitoring practices with those of recognized experts in the field” (see also Roth and Lee 2002; Roth and

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²Hydraulic fracturing, or “fracking,” is the process of drilling and injecting fluid into the ground at a high pressure in order to fracture shale rocks to release natural gas inside.

Calabrese Barton, 2004; Roth and Lee, 2004). In general, accounts of the learning that takes place in these community contexts are quite common, though they typically lack sufficient detail to reveal individual and collective learning processes (see, e.g., Evans et al., 2005).

Knowledge of science is often perceived by community groups as an important tool in pursuit of their goals. Brown (1993, p. 20) reports that “. . .Woburn activists found pride in learning science, a way to protect and serve their community, a means of guaranteeing democratic processes, and fueling of personal empowerment.” Kaplan (2000, p. 81) describes how activists around Hanford “demonstrated the ability to take an active role in deciding what science and technology policies pose a danger to public health and the environment and the ability to work together to change those policies.”

Yet in the context of community groups, it is important to recognize that scientific knowledge is not held apart from other sorts of knowledge as something special and different. Instead, it is treated as part of the story, essential information that must still be “reconstructed” and understood in proper context before it becomes useful (Layton et al., 1993; Irwin and Wynne, 1996). Often, scientific knowledge is juxtaposed with local experience and knowledge from other expert domains, such as law or economics, to produce “interestingly hybrid . . . ways of knowing and varieties of expertise” (Epstein, 2008, p. 518; see also Hess et al., 2008).

One set of circumstances that deserves special consideration is the juxtaposition of scientific and community knowledge that arises when indigenous communities interact with science. In the past 2 decades an expanding body of research in both the social sciences (e.g., Ross et al., 2007) and the natural sciences (e.g., Huntington, 2000) has explored how indigenous and scientific knowledge³ can be integrated, often with positive consequences for both community-based concerns and scientific understanding (Drew, 2005). Successful collaboration appears to depend (among other things) on both the acceptance of scientific and indigenous expertise as dynamic ways of knowing rather than static bodies of information (Berkes, 2009) and the presence of people capable of acting as intercultural “knowledge bridgers” (Bohensky and Maru, 2011).

In each community the distribution of labor takes various forms. Some, though not all, of the existing research literature points to the importance of strong individual leaders who aid in the coordination of knowledge and resources scattered throughout the community. Existing networks and organi-

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³Some scholars argue that the divide between indigenous knowledge and science is artificial and that indigenous knowledge systems should be considered scientific in their own right (Agrawal, 1995; Bang and Medin, 2010). Others argue that using “science” as an umbrella term that includes indigenous knowledge systems obscures how the fields that are typically referred to as science evolved in and reflect the norms and biases of specific places and cultures (Turnbull, 1997, 2003).

zations can also provide a useful structure. Churches and clergy have played a significant role in communities facing environmental struggles (see, e.g., Brown, 1993). The AIDS treatment activism movement, described above, brought together a broad and diverse group of community members, including grassroots activists and advocacy organizations to health educators, journalists, writers, service providers, and people with AIDS or HIV infection (Epstein, 1995, p. 413). The connections among diverse stakeholders, whether they had already existed or were formed in response to a particular issue, enable people in a community to benefit from each other’s varying knowledge and influence and are therefore critical in positioning individuals and organizations to act collectively (Lee and Roth, 2003). More research is needed to understand the relationship between network structure and community-level science literacy.

It is important to note, however, that once mobilized, communities are not necessarily united in their goals. There are often multiple organizations and actors addressing a particular issue, as well as divisions about goals (Roberts and Toffolon-Weiss, 2001). Grand Bois, Louisiana, offers a rare example of total community cohesion in which all 301 residents of the community joined a class-action lawsuit against Exxon for dumping oilfield waste in open pits. Residents discovered the problem, conducted intensive popular investigation, and formed strategic alliances with university scientists and state legislators (Roberts and Toffolon-Weiss, 2001).

Although laypeople working in social movements and advocacy groups can develop and possess impressive scientific competence in relation to their particular concerns, many such communities include scientists or work directly with scientists and scientific groups to achieve their goals. The participation of scientists and other technical experts can be important to achieving a community’s goals and establishing credibility (Shirk et al., 2012). For example, Phadke (2005) describes how engineers were crucial resources in an Indian community’s efforts to redesign a dam and avoid forced relocation. In the AIDS treatment activism movement in the United States, some key players were themselves doctors, scientists, and nurses and were therefore able to facilitate communication between experts and laypeople (Epstein, 1995).

Scholars have classified various sorts of scientist-community partnerships according to who instigated the partnership, who holds power over action strategies and goals, and how deeply nonscientists are involved in scientific work (Moore, 2006; Bucchi and Neresini, 2008). In at least some cases, community groups are responsible for identifying and recruiting relevant experts. In popular epidemiology, for example, Brown (1993, p. 21) notes that community activists typically “find their own experts.” Finding an appropriate expert is only the start, however, and forging useful collaboration is not always easy: Hess and colleagues (2008, p. 487), reviewing the literature on science and social movements, observe that “social movements, scientists, and entrepreneurs are uneasy allies and partners, and alliances sometimes shift into conflict and hostility.”

Scientists who wish to become involved in such politically charged fields as environmental justice sometimes do so with caution and even secrecy—performing crucial technical work, such as analyzing samples, as well as important epistemological work, such as identifying key sources—while avoiding any public acknowledgement (Frickel et al., 2015). Overall, managing mutually satisfactory connections with scientists and scientific organizations may be an indicator of a community’s scientific sophistication.

Taken together, evidence from case studies suggests that the success of these communities depends, at least in part, on the development of scientific knowledge throughout the community and the community’s organization and composition, including the strength and diversity of connections with scientists and health professionals, scientific institutions, and health systems. The existing research shows that these community groups take many different forms and are widely variable in their duration and impact, but at least some have had an impressive and well-documented impact (see, e.g., Hess et al., 2008; Conrad and Hilchey, 2011).

PRODUCING SCIENCE KNOWLEDGE

While pursuing their own ends, communities may meaningfully contribute to new science knowledge. Although science literacy does not require making an original contribution to scientific knowledge, the committee asserts that the creation of new scientific knowledge is a compelling demonstration of science literacy. Research from the fields of health and environmental social movements, participatory environmental monitoring, and popular epidemiology converges on the finding that communities can and do contribute to new scientific knowledge in diverse and substantive ways (see, e.g., Kinchy et al., 2014; Bonney et al., 2009; Cohn, 2008).

Although health advocacy communities and movements may primarily be concerned with promoting health rather than contributing to the creation of new knowledge, they can nonetheless make epistemic contributions: Hess and colleagues (2008, p. 481) observe that health social movements “push the boundaries of science in new directions and challenge identities and interests on both sides of the lay-expert divide.” Conversely, for many community environmental groups, creating new knowledge is an acknowledged part of their mission: Kinchy and colleagues (2014, pp. 275-276) report that the large majority of community organizations in a study of participatory environmental monitoring reported that “one of their objectives is to contribute to scientific knowledge” (see also Bonney et al., 2014). Contributions from these groups, and others like them, are valuable to both scientists and the communities themselves, and they constitute an important consequence of science literacy at the community level.

In education and natural science research, the best-known examples of

community groups participating in scientific research (and thus contributing to the creation of scientific knowledge) are those in which people serve as volunteer data collectors in large-scale scientific projects. Although these projects are of well-established value for scientists (see Bonney et al., 2009; Cohn, 2008), they do not always require much in the way of scientific knowledge from their participants, who in many cases are involved in focused data collection tasks that by themselves generate little learning about science (e.g., Brossard et al., 2005). Lakshminarayanan (2007) makes a valuable distinction between projects that position community members as scientists (or, more generally, contributors to knowledge) and projects that use people for science—positioning them as tools or instruments capable of collecting data but little more. Most of the examples discussed in this chapter fall into the former category, in that nonscientists in communities are involved in posing as well as answering questions and interpreting as well as collecting data. Brown (1993, p. 39) notes that community groups involved in lay epidemiology “may initiate action and even direct the formulation of hypotheses.” Epstein (1996) describes in detail how AIDS treatment activists transformed the clinical trial process to be more responsive to the needs and interests of patients and research participants. More broadly, Frickel and colleagues (2010, p. 462) demonstrate that social movement organizations can shape research agendas in positive and negative ways—affecting both what science is done and what science “ought to remain undone.” Though the production of new knowledge was not the goal for most of these communities, in pursuing their goals they also produced new scientific knowledge.

In the health literacy research community, this type of work is often conducted and discussed as community-based participatory research (Israel et al., 2005; Minkler et al., 2008). This approach focuses on building relationships—with principles of co-learning, mutual benefit, and long-term commitment—between scientists and community partners and incorporates community theories, participation, and practices in research efforts (Wallerstein and Duran, 2006). Israel and colleagues (2005) examined community-based participatory research in New York, California, Oklahoma, and North Carolina, documenting partnerships that researched environmental health problems and worked to educate legislators and promote relevant public policy. At each of the sites they studied, the pooling of diverse skills, mutual respect for the expertise of other partners, and a co-learning environment in which additional skill building took place contributed to community capacity building and partnership development (Israel et al., 2005, p. 1470). In Detroit, Michigan, the East Side Village Health Worker Partnership was created to examine and address social determinants of health. Through a series of group discussions and in-depth interviews, people in the community were instrumental in identifying key variables to examine, selecting and modifying measures to be included in a survey questionnaire, interpreting results, and applying findings to guide interventions. In this case, community participation in data analysis and interpretation

strengthened community capacity and provided unique insights, contributing to the creation of scientific knowledge (Cashman et al., 2008).

The value of community participation in scientific research is widely recognized and supported by evidence. Community involvement can bring new questions to light, provide data that would otherwise be unavailable, encourage the integration of qualitative and observational data with experimental data, increase the robustness and public relevance of data collection strategies, garner political and community support for conclusions, produce new instruments and technologies, and build community awareness and knowledge (Allen, 2003; Clapp, 2002; Israel et al., 2005; Epstein, 1996; Hess et al., 2008; Conrad and Hilchey, 2011). Interestingly, the hybrid nature of community-scientist collaborations may be an important part of their strength (see, e.g., Bäckstrand, 2003; Funtowicz and Ravetz, 1995; Bucchi and Neresini, 2008; Corburn, 2007). Hess and colleagues (2008, p. 484) write:

Of course, not all communities organized around issues of health and science fully incorporate science knowledge into their work or generate new knowledge. For example, vaccine hesitant individuals can form communities, either within geographic regions or on social media (Cooper-Robbins et al., 2010; Dunn et al., 2015). These groups produce content that is distributed through a wide range of platforms, including social media applications such as YouTube and Twitter (Dunn et al., 2015). Though these communities are, from their own perspective, working to achieve a particular goal on a science-related issue, they interpret particular scientific arguments and findings in ways that diverge from the scientific consensus, and they do not build or apply science knowledge in the ways that many in the scientific community (and the public health community) would prefer. In this case, as in all communities, a community’s behaviors and attitudes toward science are affected by that community’s political and religious ideologies, which in particular circumstances may override scientific knowledge as an influence on dispositions and actions (Fiske and Taylor, 1991).

CONSTRAINTS ON COMMUNITIES

Although many communities suffer environmental or health crises, research does not yet show the extent to which communities are able to mobilize to respond to these problems at a local level or what features of particular communities enable them to develop and use science literacy in powerful ways. Science literacy at the community level, like science literacy at the individual

or society level, is to some extent a product of the larger social structures in which a community operates. As noted above, the success of AIDS treatment activism was possible in part because biomedicine as a field was relatively open to outside scrutiny and because the activists were themselves participants in the contested studies. Furthermore, and crucially, their ability to accomplish what they did was shaped by the structural privilege (such as the race, gender, and/or class status) belonging to some activists. That is, this particular community was socially positioned to challenge the status quo and had a relatively high degree of access to the particular social system they hoped to change.

Other communities may be hampered by their inability to establish legitimacy and credibility (Ottinger, 2010, 2013; Ottinger and Cohen, 2011). Ottinger (2010) shows how regulatory standards and standardized practices cemented resistance to citizens’ broader participation in air quality monitoring in Norco, Louisiana. Activists promoted an alternative to standardized air monitoring practices, using methods that measured short-term spikes in air pollution levels rather than the standard strategies that measure the average concentrations of toxic chemicals over long periods. Regulatory standards for air quality, combined with standardized practices for monitoring, meant that activists’ methods and data were incompatible with the standard scientific practice. In this case, existing standards provided grounds for excluding nonscientists from decision making—not because they were not experts, but because they did not have “credible” scientific information to offer (Ottinger, 2010).

Access to knowledge or particular resources is also critical. Greenberg and Wartenberg (1991) report that many state and local health departments, responding to citizens’ reports of high rates of cancer in their communities, have sent out form letters declining to investigate claims of potential cancer clusters. Lack of open access to data, from various sources, including government agencies, may hamper a community’s ability to build or apply its science literacy.⁴

Under-resourced communities are particularly susceptible to the types of crises in which community activism informed by science literacy would be crucial, yet they often have the least access to resources that support science literacy. For people who rely on municipal water supply in Flint, Michigan (Washington and Pellow, 2016), or who live and work in the part of Louisiana known as cancer alley (Allen, 2003), or in the agricultural towns of the central valley in California (Harrison, 2011), there is an urgent need to understand the perils of environmental health threats (see also Fessenden-Raden et al., 1987). In these contexts, developing and using science literacy may play an important role in protecting one’s family and community and in advocating for social and environmental change. Yet these and other communities most affected

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⁴In some cases, individuals and communities have difficulty accessing their own data from community-based participatory research groups. This can create a significant barrier to community activism around knowledge generated by those groups.

by environmental harms are often the same communities that are structurally disadvantaged in both the development and use of science literacy, in the ways described in Chapter 3. They are also subject to economic, social, and political pressures that constrain their ability to act on what they know.

Given that the ability of certain communities to build and apply their science literacy is constrained by social structures, developing science literacy in communities may also require supporting and empowering communities to act on knowledge. For example, research from the health literacy field suggests that building health literacy requires a broad range of educational and communication methods (such as personal forms of communication and community-based educational outreach), as well as service management and organizational supports (such as minimizing and simplifying form filling) (Nutbeam, 2008).

The shifting contexts and social structures in which communities operate play an important role in determining why one community may build and apply science literacy while others do not. Additional research is needed to understand the various features (e.g., community organization) and contexts (e.g., a community’s political power in a particular setting) that enable or prevent community involvement and action related to science literacy. More specifically, carefully constructed quasi-experimental designs comparing communities that have experienced similar⁵ issues might help identify the community features that lead to the development of science literacy at the community level (see, e.g., Campbell and Stanley, 1963; Trochim, 2000). For example, studies could consider: How is knowledge sought and shared with a community? How easy is it to access the scientific resources of a community? What aspects of a community’s culture are most important in shaping its engagement with science? (Kickbush, 2001).⁶

CONCLUSIONS

Existing research provides compelling support for the idea that communities can possess and use science literacy to achieve their goals and may also contribute to new science knowledge in doing so. The ability of communities to apply their science literacy is enabled or constrained by social structural contexts. Scholars in the health literacy field recognize that improving health literacy in a community involves more than the exchange of information; the research indicates that developing science literacy in communities may also require supporting (through institutional systems) and empowering collective

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⁵Care would need to be taken in the selection of studies for comparison, as issues that appear superficially similar to outside observers may not be analogous. The historical context of particular incidents shapes the events that follow (see, e.g., Wynne, 1992).

⁶Kickbusch (2001) recommended that a health literacy index be developed to reflect the composite health competence and capabilities of a community as it relates to a set of health, social, and economic outcomes.

groups of individuals—communities—to act on their knowledge (Nutbeam, 2008).

CONCLUSION 8 There is evidence from numerous case studies that communities can develop and use science literacy to achieve their goals. Science literacy can be expressed in a collective manner when the knowledge and skills possessed by particular individuals are leveraged alongside the knowledge and skills of others in a given community.

CONCLUSION 9 Based on evidence from a limited but expanding number of cases, communities can meaningfully contribute to science knowledge through engagement in community action, often in collaboration with scientists.

Most of the case studies the committee examined to explore community-level science literacy did not focus explicitly on science literacy or health literacy. Rather, we extrapolated the role of science literacy in accomplishing a community’s goals. Future research should explicitly consider the development and uses of science literacy in community contexts and its value in achieving community goals.⁷ Furthermore, in most cases there has been little effort to assess, prior to the start of community action or controversy, what level of science literacy was present in the community at the level of individuals in the community or how it is distributed.⁸ It is difficult to imagine doing so in most cases, since community action and controversy are typically what draws the attention of researchers. As a result, it may be difficult to test a cause-and-effect relationship between “enhanced” science or health literacy and particular community-level outcomes, so that one has to infer what a community had to know in order to accomplish a particular goal.

Though the committee supports a view of science literacy that considers how communities may possess science literacy, we also believe that assessing the nature and outcomes of science literacy at the community level should be approached with caution. When a community achieves something impressive, such as preventing the construction of a hazardous waste storage facility in its area, there is no guarantee that it has done so primarily through the application of some form of science literacy. Therefore, the research on popular epidemiology, environmental and health social movements, and community environmental monitoring is especially valuable: in each case, researchers have examined how and when communities possess knowledge about science and exert influence on the creation of new knowledge.

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⁷For the committee’s specific research recommendations, see Chapter 6.

⁸Fessenden-Raden and colleagues (1987) consider inter- and intracommunity differences in cases of risk perception communications.