Science with the People - by Doug Brugge and H. Patricia Hynes / Healtchare / In Motion Magazine

Science with the People

Community Research in Environmental Health Studies
in Science, Advocacy and Ethics

by Doug Brugge and H. Patricia Hynes
Boston, Massachusetts

The following article is the introduction to the book Community Research in Environmental Health Studies in Science, Advocacy and Ethics by Doug Brugge and H. Patricia Hynes. The book can be purchased online from Ashgate Publishing or from Amazon.com. Doug Brugge is Associate Professor of Family Medicine and Community Health at Tufts University School of Medicine, USA.
H. Patricia Hynes is Professor of Environmental Health at Boston University School of Public Health, USA. Linked Notes and References will appear in a new browser window for easy viewing.

In recent years there has been a growing interest in community research. While much of this work has been in other fields, the area of environmental health has seen its own burgeoning interest in research conducted at the community level with active participation by members of the community. We believe that this trend has been driven by the emergence of the environmental justice movement. Our experience and that of our colleagues who have engaged in multiple community collaborations is the basis for this book.

We have worked both together and on separate projects. The topical areas of the studies that we have done include lead contaminated soil, asthma and housing conditions, traffic injuries, the impact of development on environmental health, and the impact of radiation hazards on Native Americans. Several of the chapters herein report in detail on our work. Others are the work of colleagues we have met through our work who are engaged in similar collaborations and whose topics include local and regional air pollution, urban community gardens, urban rivers and industrial hog production. We make no claim that the work presented here is fully representative of the broader range of community-based environmental health projects. We do feel that there are multiple lessons that we and other researchers in the book have learned in the process and that these lessons will be of interest and instructive to students, researchers, community members and government agencies. Further, we feel that they are consistent with lessons put forward by others (Minkler and Wallerstein, 2003).

Indeed, we see in our students a constant demand for education about how to engage in the type of work that we do. Our students are both attracted to community research and perplexed by the seemingly steep challenges to such endeavors. Our students are particularly enthusiastic with our classes because we use real world, project based methods that give them opportunities to actually engage with communities in solution-oriented learning. The fact that community-collaborative research appears to enhance education and the student experience is a notable ancillary benefit to the original impulse that motivates such collaborations.

We find that the basic force driving change in the way that research is done in communities comes from the communities themselves. More and more, in our experience, communities demand that research that is relevant to their interests be conducted in such a way that they have input into the research process. They want to help set the research questions or hypotheses that will be tested. They want to participate in the research process by being hired on as staff. They want to be in the room when decisions that affect the analysis of the data are made. They want to have funding shared with them and research conducted that directly benefits them. And they absolutely insist that the results be reported back to them and that they have a chance to present their interpretation of the findings.

Given our interest over many years in forming research collaborations that are as equitable as possible with communities, we welcome the changes that we see around us. But even so, we have to acknowledge that there are innumerable challenges and that our students are correct to find navigation of the terrain of community research daunting. Our hope in publishing in one place this series of case studies is that they will be useful to persons engaged in community research, who are seeking more insight into their work, and to people just starting out, like our students.

Science for the People

Today’s landscape is a sharp contrast to 20-30 years ago when the dominant paradigm among progressive academics in science was slanted more toward addressing the politics of the scientific process and the political role of scientists in conducting basic research than toward engaging in research with communities. In this modality, science was done “for” the people, rather than in collaboration “with” the community. A 1975 pamphlet put out by Science for the People reads in part:

Besides the more explicitly political tone of the times, the statement speaks to scientists in a more ideological (largely Marxist) framework than today’s community-collaborative initiatives. It is about organizing scientists to join with and support the dominant movements of the time, the anti-war movement, the woman’s movement, the Black power movement and the labor movement. The word “community” does come up, but it is not clear that it in any way refers to what today would be considered community-collaborative research.

In his autobiography, the Harvard University geneticist and long-time activist with Science for the People, Jon Beckwith, frames the choice he and others faced as either staying in science and addressing the social consequences of science or leaving science (Beckwith, 2002). While Beckwith reports having been involved in some community organizing, most notably with respect to Harvard’s expansion into the adjacent Mission Hill community, such organizing was not connected to his research.

We believe that the work included in this book represents a third choice. The editors and contributors to this volume practice applied science, a path not explored by Beckwith. In many ways applied science is a satisfying solution for those desiring to bring social and political values to their work, but wanting to remain active researchers. In the realm of applied science, the real world impact of research is more immediate and the researcher has greater influence over how research findings are used in policy setting.

Today’s growth of interest in community research takes place at a time when the prevailing political winds are not so progressive and protest on campus and among academicians and scientists about global and national concerns is more muted than in the 1960s and 1970s. Indeed, recent analysis by Sheldon Krimsky highlights the fact that the academic enterprise is being pulled increasingly into for-profit ventures with negative impacts on the traditional role of the campus as a place for public interest research (Krimsky, 2003). It is interesting that the corporatization of the academy is on the rise at the same time that community-collaborative research is growing.

Nonetheless, outside of the universities, there has been a 20-fold surge of nongovernmental organizations over the past 50 years as a civilian response to the political monocultures and monopolies of government and business (Runyan, 1999). From this strikingly heterogeneous “third sector,” many unprecedented expressions of environmentalism have emerged. These include an environmentalism distinctly and popularly expressed in developing countries, as well as the environmental justice movement among urban and rural poor, blue collar communities and people of color in the United States. Both of these socially conscious expressions of environmentalism have arisen within the structural contexts of worldwide urbanization, industrial and economic globalization, and the proliferation of inexpensive telecommunications.(1)

The environmental justice movement in the United States has been a driving impetus for the expansion of community participation in environmental research because it has a strong community orientation. The environmental justice movement has goals that are not as all encompassing or as ideologically framed as those envisioned by Science for the People; but because the environmental justice movement emerged from the grassroots and continues to this day to be grounded in popular and local struggles, its unit of identity is largely the community and its goal is to remove the disproportionate burden of pollution on low-income communities and communities of color. Because addressing environmental problems easily leads into a thicket of technical details, and low-income communities rarely have the expertise to grapple with these technicalities, there emerge opportunities for collaboration between environmental justice communities and academic researchers.

While environmental justice has almost certainly been an issue for centuries (think of the early encounters between Native Americans and Europeans, for example), the conscious self-described environmental justice movement has more recent origins. Two activist struggles and two publications stand out as seminal markers of the emergence of the movement. In 1978 Lois Gibbs organized, with other blue-collar housewives and mothers, a successful protest to have families relocated from a neighborhood in Love Canal that had been built adjacent to a mile-long trench filled with industrial waste. Their action launched modern grassroots environmentalism based on “popular science,” citizen protest, and making links between health and environmental pollution. In 1982 an African-American community in Warren County, North Carolina protested EPA’s siting of a national landfill for the disposal of polychlorinated biphenyls (PCBs) in their community. The event sparked a sequence of studies and protests against the deliberate siting of waste facilities and “dirty” industries in poor communities of color, identifying the practice as environmental racism.

Toxic Wastes and Race in the United States, issued by the United Church of Christ in 1987 (United Church of Christ Commission for Racial Justice, 1987) and Dumping in Dixie: Race, Class, and Environmental Quality, written by Robert Bullard and published in 1990 (Bullard, 1990) were instrumental in forging a nationwide and cohesive movement out of what had been localized activist struggles largely invisible to much of the public, university researchers included. In 1991 hundreds of delegates from every state in the United States attended the first People of Color Environmental Leadership Summit in Washington, D.C. The conference created a national visibility for the issue of environmental justice and culminated with a set of principles of environmental justice that have been the cornerstone of environmental justice work. In 1994, President Clinton issued Executive Order 12898 which directed each federal agency to make the achievement of environmental justice a part of its mission, a measure of the immense impact of the movement on federal government consciousness.

In subsequent years the issue of environmental justice has gained wide recognition and grown in strength. The idea of organizing low income communities and/or communities of color around environmental issues has even changed the conception of what is the environment in many circles. No longer is environment seen as only or primarily rain forests and whales. Nor is environment so tied to the traditional mediabased approach of air, water and soil employed by government agencies. The impact of the urban center and the lived environment on human beings has been brought to the fore. Housing and school building conditions, roadway construction, trashy vacant lots and traffic emerge as critical problems alongside toxic waste dumps and polluting factories. It is the social environment, the lived environment, the built environment as well as the physical environment about which environmental justice is most often concerned.

Communities taking up the call for environmental justice build on the activist tradition of the civil rights movement of the 1950s and 1960s. Thus, this is not a sterile demand for technical solutions. Rather, it is a broad call for justice emphasizing the empowerment of the people affected, the re-distribution of resources, and the principle that all people -- regardless of race, class and gender -- have equal right to a safe and healthful environment. Environmental justice strains at the boundaries of what is “environment” because there are so many pressing issues in these communities. And these activists are not likely to sit back and let the “experts” frame the problem and determine the solution. Expert is, in their eyes, often a questionable designation in the first place since it emanates from the very sources of power that they see as oppressive. Too often environmental justice communities find that the traditional experts are wrong or on the wrong side. They don’t trust the experts and, at a minimum, want to engage researchers and other professionals on an equal footing. Thus, when such communities see the need for research or see value in a proposed study that is brought to them, they are motivated to negotiate terms that fall into one or another of the various forms of community collaboration.

Such arrangements can be as simple as research on issues of interest to the community, which is traditional in most respects, but which stems from the community’s request/demand that their problem be studied, to more fully participatory research. The chapters in this book result from projects that fall at various points along what we regard as a continuum of community-collaborative research. While some may argue that one end of the spectrum is superior to the other, we regard each community and each study included here as valuable community-collaborative research with the possibility that differing models of collaboration may be appropriate in different settings. To us, the bottom line is a shift from serving the people (a client model or science “for the people”) to the community as partner or science with the people.

Who is the Community?

The intense interest in community research has at times leapt ahead of a clear notion of what does or does not constitute a community. This superficially simple point is actually not so easy to answer. Below we list a few definitions that we have found:

We like the last definition. All of the communities with which we work have had some aspect of geographic boundaries, even if not all the community members lived within the boundary. Likewise, we feel that social ties and joint action are necessary to forge a community out of people who would otherwise simply be living and working in proximity to each other. More problematic is the issue of shared perspectives and who speaks for the community. We have tended to work with community-based organizations that meet the above definition and that speak at least for a prominent sector of the community, but that may or may not speak for all members of the community, if that is even possible. Finally, while environmental justice communities may share common perspectives on environmental insults and environmental goals, they may diverge on other social issues or political strategies.

With the growth of environmental justice and community participation in research, both within and beyond the environmental health area, has come increasing respectability. While it is true that participatory research is by no means the dominant approach, and while it is also true that environmental justice research is still a fraction of environmental research, there has been substantial progress. The change is reflected in the literature. Recently the journal Science carried an article on protecting communities (as opposed to the prevailing notion that one protects individuals) in biomedical research (Weijer and Emanuel, 2000). A whole issue of the federal government published journal, Public Health Reports (2000), was devoted to partnerships with communities. The first issue of the new CDC journal, Preventing Chronic Disease, featured a number of articles on community-based research. And numerous other authors have written articles that begin to set a theoretical and methodological basis for a community role in research collaborations (Israel et al, 1998; Baker et al., 1999; Schensul, 1999).

Funding for community collaborative research, environmental justice and the two combined increased throughout the 1990s. Today there is a steady stream of requests for proposals from the National Institutes of Health, the Environmental Protection Agency and the Centers for Disease Control and Prevention that requires the proponent to have community partners. The annual National Institute of Environmental Health Sciences RFA for environmental justice community collaborations is a prime example of this trend in environmental science (O’Fallon et al., 2003; Minkler and Wallerstein, 2003).

Another example, albeit one that is broader than environment or environmental justice, is the Community-Campus Partnerships for Health at the University of California, San Francisco that describes itself thus:

Further, college and graduate classes that focus on community collaboration or environmental justice abound. We cannot quantify their growth because they have not been cataloged as such (although this should be researched). Besides teaching such classes ourselves and seeing first hand the interest and demand among students for such classes, we have many colleagues doing the same on other campuses. One of the co-authors recently received the national Delta Omega Award for Innovative Curriculum from the public health honor society for her community-collaborative and project-based course, Urban Environmental Health, a testament to the timeliness and relevance of our book’s topic.(2) In short, the time is ripe for introspection and analysis, for assessing and promoting community research in a variety of ways. We hope this book will be one of those ways.

Summary of the Book

This volume is a compilation of case studies that we have either personally been involved in or that we have invited from our colleagues. The cases examine the nature and form that the community collaboration took, the scientific design and findings from the work and the ethical issues that had to be dealt with. Many of the chapters were previously published in the peer reviewed public health literature. A few are published here for the first time.

We divide the book into four topical areas: housing, open space, urban development and transportation, and environmental exposure. About half of the chapters report findings from studies, the other half are concerned more with reporting on the process and/or methods used. Most of the studies in this volume involved providing funding to the community and an active role in decision-making. The main exception is chapter 10, a regional study of air pollution in California that, while responding to community determined research question, did not engage a small geographical community in the way that the other studies did.

Most of the chapters report on studies that engaged in community-based participatory research. We chose deliberately, however, not to limit the volume to such studies. In our experience, there are non-participatory forms of research with communities that are also valid, and in some cases, most appropriate. The traffic injury study of Boston Chinatown (Chapter 8) is such an example. It is better described as research commissioned by community partners who were busy and understaffed and preferred to have the work done for them, somewhat as a company or city agency might hire a consultant.

Most of the studies reported here were conducted in response to community requests or demands. However, we do not think that all good communitycollaborations have to start with the community approaching the researchers. In our experience, there are instances where university partners first raised the idea of the study that led to solid and mutually beneficial collaborations. A case in point is our Healthy Public Housing Initiative. In HPHI there was activity and interest both in the community and at local universities, but it was the editors of this volume, the university partners, who first brought the idea of a research partnership to the community and to city agencies.

Community collaborations may be with either community-based agencies, such as community health centers and service agencies or with more grassroots entities, such as resident associations and small advocacy groups. This distinction is not commented on in most of the literature on community collaborative research. Several of the studies reported here, included grassroots partners and trained and employed residents (as opposed to activists or agency staff) in their research. These include the pilot study to the Healthy Public Housing Initiative described in Chapter 1, the study of diesel exhaust in East Harlem described in Chapter 9 and the work with Native American tribes downwind from the US nuclear test site in Nevada, which is described in Chapter 11.

Many of the studies reported had substantial regional and federal funding from the US National Institutes of Environmental Health Sciences or the US Environmental Protection Agency. These include the survey research in public housing (Chapter 1), research ethics study of HPHI (Chapter 2), the Seattle Healthy Homes project (Chapter 3), the lead safe yards project (Chapter 5), the Harlem study of diesel exhaust (Chapter 9), the regional air pollution study (Chapter 10), the nuclear risk management for Native Communities project (Chapter 11), and the hog production study (Chapter 12). Some of the studies managed to produce results published in peer-reviewed journals with only limited funds from small grants (Chapters 7 and 8). Some of the chapters would best be described as pilot studies leading to larger follow-up studies. Chapter 1 is a pilot study that helped create the Healthy Public Housing Initiative, a large multi-year intervention study. The most significant outcome of one of the studies of Boston Chinatown, Chapters 7, was that it developed methods for conducting survey research in that community. Chapter 4 is a narrative description of the early stages of developing a university-community partnership.

It is also notable that the chapters fall into several research methodologies. Some utilized interviews (Chapter 2, 11), observation (Chapter 4), and/or survey questionnaires (Chapters 1, 6, 7, 11). Others collected physical measurements of environmental parameters (Chapters 3, 5, 9). Still others analyzed existing databases (Chapters 8, 10). Two of the chapters describe early stages of intervention studies (Chapters 2, 3).

Chapters 2 and 12 address the topic of the ethics of community-collaborative research. Chapter 2 is a qualitative study of perceptions of research ethics within the Healthy Public Housing Initiative that we co-direct. Chapter 12 is a narrative telling of an ethical conflict encountered by a community participatory study of hog production in North Carolina. Over the last 25 years, grassroots environmental organizations and the environmental justice movement have challenged the federal and state governments and university researchers to conduct research that is relevant, transparent, accountable and collaborative. Communities have pushed to have the evidence of their lived experience taken into consideration. Numerous models of community collaborative research have arisen, ranging from scientists working with the research questions of the community to scientists training community members as researchers. The studies assembled in this book span this continuum and offer insights into how to do environmental and public health research that engages the community as partner. The rise of community research, variably called communitybased and community-based participatory research, gives scientists the opportunity to integrate social justice with sound science.