The Debate Over Science

The Debate over Science section break
Analysis of key barriers to sound environmental health science, plus two reports on community-based participatory research.
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Power, Privilege and Participation

Meeting the challenge of equal research alliances
 

power, privilege and participation Over the past decade a growing number of organizations engaged in environmental justice struggles have recognized the need to bolster their capacity to investigate links between environmental exposures and health problems. In the face of the enormous scientific resources of polluters (and in some cases government agencies), it is increasingly difficult to make the claim that disproportionate environmental exposures in communities of color are linked to racial disparities in health. Corporations and government agencies, with the backing of well-paid scientists, often claim there is no proof. Consequently, many community-based organizations have been backed into a corner of having to defend our position that environmental racism does indeed exist. As a result, a growing number of these organizations are seeking to access the resources of academic institutions to strengthen our struggles for justice.

As a response to this dilemma, WE ACT for Environmental Justice has created several community-based research alliances with the Columbia Mailman School of Public Health in Northern Manhattan. We’ve established these alliances as a means of adding scientific and other expertise to our local organizing campaigns, and of building community

knowledge, capacity and leadership. Over the years, our collaborations with various researchers at Columbia have enabled us to measure air pollution at various street corners in the community and show a correlation between diesel traffic and black carbon pollution; to assess the short-term impacts of air pollution on the respiratory health of high school students at three New York City schools; and to measure the effect of in-utero (before birth) environmental exposures on the heath of newborn babies. Most importantly, WE ACT and community residents have taken these research results directly to elected officials and others in powerful positions in order to demand cleanup of polluted air in communities of color in Northern Manhattan.

The relationships we’ve created with Columbia researchers have evolved over a decade of both cooperation and struggle. One of the biggest challenges has been overcoming the inherent inequality in power that exists between an academic institution like Columbia’s Mailman School of Public Health, and a community-based organization (CBO) like WE ACT. Whereas the term “partnership” is increasingly used, in the spirit of community-based participatory research (CBPR), to describe relationships between universities or colleges and CBOs, it’s often done so without acknowledgment of the inherent inequalities between these distinctly different entities.

While CBOs and universities may share an interest in CBPR, they have distinctly different histories, capacities, and sets of resources available to them. These differences add up to significant disparities in power. These disparities are usually not acknowledged at the beginning of a potential research relationship, or are obscured by mutual optimism in the partnership’s ability to overcome structural inequalities between collaborating institutions. However, these inequalities emerge as academic researchers assert the authority to secure funding, define the research problem and methodology, conduct the research, assess findings, and write and publish findings. Communities are often left with information but no more skills or capacity than they had initially.

Invisible Inequities

Differences in power begin with a difference in access to financial resources, including both overall institutional budgets and shared grants. For example, imbalances in overhead rates (the percentage of a grant that goes towards basic organizational costs like rent, phone and electricity bills) mean that academic institutions often receive a disproportionate share of joint grants. Due to a difference in salary structures between CBOs and universities, when salary is used as a literal estimation of the worth of each partner’s time, the community organization often emerges as the lesser-paid entity. This problem is compounded by the unfortunate impression that community knowledge and expertise is not “worth” the same as that of formally trained researchers. The existence of many unfunded community advisory boards for research projects across the nation illustrates the persistence of this exploitative belief.

To further complicate these financial challenges, the portion of shared research grants that do go to a community organization is often a significant proportion of their total budget. This creates a financial incentive among CBOs to continue the research relationship. The resulting financial dependence on research grants may undermine an organization’s efforts to stay “on mission” and exercise the autonomy to say no to new research ideas posed by their academic allies, even when those projects are only tenuously related to the justice goals of the community organization.

A less obvious form of power imbalance emerges when institutional privileges mirror and amplify race and class privileges among the individuals involved in a research effort. Many organizations comprised of and representing communities of color find themselves at the research table with formally educated, middle- and upper-class, overwhelmingly white re-searchers. The trappings of formal education go far beyond substantive knowledge, often manifesting as assertiveness in one’s personal communication style, a firm belief in one’s understanding of what’s in the community’s “best interest,” a sense of entitlement to make decisions for the group, or a sense of entitlement to the time of the community organization’s staff. In the worst cases, researchers not only passively benefit from their privilege, but also actively exercise it to further their own career or research goals.

Although this imbalance is somewhat alleviated when the research partners are people of color, class privilege remains an obstacle. Furthermore, whatever the identities of participating individuals, individual differences in privilege must be understood in the context of institutional differences in access to resources and opportunity. Race and class privilege remain the elephants in the room for many research endeavors, with few tools or incentives to encourage members of new research alliances to squarely address the inequities of these and other forms of privilege.

Making The Relationship Work

Like any meaningful commitment between two distinct entities, the establishment of true partnerships in the realm of research requires a great deal of care and a deliberate investment of resources. Despite being among the most crucial ingredients for successful ventures, thoughtful attempts to equalize power are often the most easily overlooked. As starting points for establishing and maintaining healthy research relationships between academic and community partners, we recommend the following guidelines:

Common goals
Community-university research collaborations often launch projects ambitiously assuming that they have a shared goal, such as documenting environmental exposures or health status in a given community. Several years down the line many of these collaborations come to find that their goals are not so common after all, or that a single shared goal is not sufficient to hold the research relationship together. Articulating and agreeing on a shared set of goals—as well as identifying individual goals and agreeing to support one another on reaching those goals—is an important first step in building a strong structural foundation for collaborative research.

Written principles of collaboration
Drafting principles of how two (or more) entities will work together is a key ingredient for a healthy relationship. Furthermore, developing a well thought-out, written document is often the best way a CBO can assert its own power, and safeguard against the many subtle ways that power differences play out between individuals over the course of time. Principles of collaboration ideally include the respective values and goals of participating organizations, as well as the shared vision and goals of the collaboration.

The key components of these principles should discuss, at a minimum, items such as: communication (both internal and external); decision-making; project management and oversight: financial arrangements; “proprietary” issues such as who has the right to do what with the research results; and how community capacity will be built to truly understand and utilize the research results to support organizing or policy advocacy. These principles should be signed by the equivalent of a principal investigator or executive director on both sides, and also be included in the written work contract or subcontract between the university and the CBO to give it the weight of law.

Mutual respect and trust
Initial trust-building measures include reciprocal “orientations” to each participant’s respective world. For example, WE ACT invites our academic research partners on a Toxic Tour of Northern Manhattan to orient them to the often-invisible environmental and social realities of community residents. It’s important to us that researchers feel a sense of investment in the community we are working and living in, and that the research has a “face” of various community residents and leaders, to help give the study a sense of life and spirit. We extend this orientation to include an overview of the wider environmental justice movement to help complete the picture of who we are as a community-based organization and why we have engaged in this project. In return, our research partners have, at various points, oriented us to the realities of the tenure process and to their other research interests and facilities.

Shared Learning and Capacity Building
The community-based participatory research relationships we have developed with researchers at Columbia University include a commitment to building the capacity, knowledge and skills of both entities. On the community side, WE ACT’s Environmental Health & Justice Leadership Training is a program that has trained more than 100 community leaders in the basics of environmental health and science. The training, based on the graduate-level Environmental Health core course at the Columbia Mailman School of Public Health, has been developed and is delivered in collaboration with our research allies. By way of reciprocation, WE ACT staff frequently guest lecture in various courses at the School of Public Health, providing a “real-life” context of environmental racism and the local community for students. We also offer our perspectives on the ways in which students, as future public health practitioners, can be effective allies for social justice.

Finally, WE ACT has significantly built its capacity to effectively organize and advocate for environmental health and justice by internalizing scientific and technical capacity on staff. My own background in environmental health and science (combined with the engineering expertise of a field technician recently hired through one of our collaborative research grants with Columbia) has helped us break our dependence on our good friends at Columbia for understanding and proactively addressing often-complex health and science questions.

Long-term Needs of the EJ Movement

The Environmental Justice Movement has several opportunities to bolster our power and effectiveness by strategically accessing the resources of scientific and academic institutions. One of the long-term needs is to break down the dichotomy between community “insiders” and academic “outsiders” by helping bring more people of color, particularly individuals from communities most affected by environmental racism, into relevant academic fields and institutions. This means supporting youth from our communities to enter the academic world. Internalizing scientific capacity also means challenging the limiting concept that organizers and other staff of CBOs cannot or should not “do” science themselves but should depend on their scientist allies.

The next long-term need is to effectively combine academic and technical resources with community organizing, the central approach for many CBOs to achieving environmental justice in local communities. This means working to maximize the benefits of partnerships while retaining an organizing focus, avoiding the pitfalls of financial temptation, knowing when to say “no” to new research proposals, and remembering that science and academics are a means to an organizing or advocacy end rather than the end in itself.

The time and measures that it takes to establish and maintain healthy, non-exploitative research relationships between academic and community partners are rarely built into project plans or grant applications. Yet not taking these measures into account amounts to setting up a relationship for failure. Moving forward, funders of CBPR must also play a role in affirming that the “hidden costs” of building meaningful relationships are as important as the costs of “analyzing samples” or communicating results to the public.

Accessing the potential of academic collaborations to strengthen our campaigns for justice remains within the reach of many environmental and social justice organizations. As we work to realize this potential, it becomes increasingly important for community-based organizations to communicate, share lessons, and support one another to ensure that these alliances unfold in a manner that truly empowers communities struggling for environmental justice, and for safe and healthy communities.

Swati Prakash is the environmental health director for WE ACT for Environmental Justice. 

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Deceptive Science

The problem with risk assessment
 

By Peter Montague 

When local authorities want to expand a highway, for example, through a low-income neighborhood, to forestall local opposition they conduct research known as a "risk assessment." First, they list a few of the pollutants found in the air near highways. Then they list a few of the ways those pollutants harm humans. Next they estimate how much the "most exposed" person will breathe. And finally, they estimate how much harm the pollution will do to that most exposed individual. Despite this work, they often decide to allow the development because, although their risk assessment finds that harm is likely, the harm is deemed "acceptable."

These days, risk assessment methodology is used like a bulldozer to clear a path for just about any development or other project that corporations and governments want to do. Risk assessors run interference for agencies that want to spray pesticides to kill mosquitoes, build incinerators to burn garbage, spread contaminated sewage sludge to fertilize city parks, put up a school on contaminated land, and on and on. Often, authorities do a risk assessment to convince residents that any potential harm of development or industrial activity is minimal.

 

Roots of Risk Assessment

Well-meaning government officials started using risk assessment in the 1970s, hoping to make their decisions more scientifically based and consistent. Unfortunately, in most cases, the scientific information that’s actually needed to make sound judgments isn't available, so risk assessors fall back on assumptions, guesswork and "fudge factors" (also known as "safety factors"). As a result, two risk assessors working with the same information can reach wildly different conclusions. Though risk assessments are not technically scientific—they cannot be reproduced from one laboratory to another—they are often presented as scientific conclusions.

By the 1980s, corporations saw that risk assessments could be finagled to justify almost any decision. Risk assessment uses some scientific data (plus estimates and guesses dressed up as science) and the conclusion is always expressed in numbers. Because risk assessment produces a numerical answer, it leaves out ethics and values, such as justice and fairness. As a result, with risk-based decisions, the general public often doesn’t understand the process, can't participate in the decisions, and can't raise key questions like, “Who gets to decide?” Furthermore, because risk assessment doesn’t take justice into account, it can rarely serve to challenge environmental injustice and, in fact, often supports institutional racism.

 
In sum, risk assessment is an expert's game that excludes the public, appears to be scientific even when it’s based on little more than guesswork, and can be manipulated to allow decision-makers to justify almost any conclusion that suits their political agenda or wallet.

 

Deceptive Science_1
Young boy sits on basketball court next to an oil refinery in Louisiana's "Cancer Alley." ©Mark Ludak/The Image Works

 

Four Fundamental Flaws

But risk assessments have not gone unchallenged. In the past decade, new scientific information about chemicals and health has punched more than a dozen new holes in this technique. I'll mention four:

1. We now know that, because of genetic inheritance, individuals differ greatly in their reaction to toxins. For example, some people cough and wheeze when they walk down the detergent aisle at the grocery store; others don't. Risk assessors try to account for the differences between individuals by applying a "safety factor" of 10 to their numerical estimate of risk. But this factor has little scientific justification. Even calling it a safety factor is misleading because no scientist can know how much of a poison is safe for a particular individual—especially if that individual is a child, or is elderly, or suffers from some chronic disorder (e.g. asthma) and is exposed to a multitude of other chemicals (e.g. smog) in daily life.

2. Risk assessments of chemicals are conducted on single chemicals. But we’re all exposed to mixtures of chemicals, including diesel fumes, second-hand smoke, water pollutants and smog, every day. Pinpointing the effects of exposure to low levels of a single chemical is almost impossible. Furthermore, many recent studies have shown that harmless amounts of several individual chemicals, in combination, can add up to a harmful dose. So to learn the real health effects of chemicals, scientists would need to study all chemicals in combination with other chemicals. Unfortunately, this is so complicated and expensive that scientists almost never do it.

What is true about individual chemicals is also true about multiple sources of pollution. For instance, in the Waterfront South neighborhood of Camden, New Jersey, individual risk assessments were conducted on a cement-crushing plant, a garbage incinerator and a sewage treatment plant. Over the years, officials deemed the risks from each facility (rather than all facilities combined) "acceptable." Now this low-income, predominantly black and Hispanic community is burdened with an intolerable combination of stench, filth and danger. Because risk assessors can't evaluate multiple chemicals or multiple hazards with precision or reliability, in many situations their claim that risks are "acceptable" is a kind of scientific fraud.

3. We now know that some chemicals are only harmful during a brief period of time (or "window of vulnerability") in the development of an organism, such as the nine months a fetus grows in the womb. Some chemicals may only be harmful during a particular few days or weeks—i.e., when the brain or heart or eyes are developing. As a result, to learn about toxicity, tests must be conducted (on mice or rats) during those exact times. Chemicals tested during other times may appear to be harmless when they are actually dangerous.

4. Risk assessments ignore thousands of important biochemical reactions. For instance, current federal protocols for examining the tissues of laboratory animals were developed before the modern era of biochemistry and molecular biology. After animals are exposed to chemicals and then killed for tissue analysis, their organs are examined visually for gross damage, but microscopic examination of the organs is not usually required. The really sophisticated analyses made possible by modern biochemistry and molecular biology are almost never done, because they are expensive. From the viewpoint of modern biology, animal testing is decades out of date, and will likely remain so for economic reasons.

Furthermore, a chemical is often studied for its ability to cause cancer. But cancer is not the only risk. Chemicals can harm our ability to think and pay attention (nervous system); our fertility and success in reproducing; our ability to resist disease (immune system); and our hormones (chemicals in our blood that control growth, development, learning and behavior). In most risk assessments, these aspects of our health are simply omitted because they are too complicated to study. When 90 percent of the problem is ignored, how can the conclusions be scientifically valid?

These shortcomings of risk assessment cannot be fixed because there simply aren't enough laboratories and enough money to take into account all the potential sources of harm. So risk assessments will continue to be gross oversimplifications having little relevance to the real world.

 

Deceptive Science_2
Students from Horizon High School in Hamtramck, Michigan study the water quality of Rouge River. © Jim West/ The Image Works

 

 

 

 

 

 

 

 

 

 A Better Way

There are alternatives. If risk assessments continue to be used, they could be supplemented by a precautionary approach. For instance, a community can determine goals for itself and examine different ways of achieving those goals. Then the risks and benefits of each option might be considered and discussed. Risk assessment might play a role in examining each option, as long as the shortcomings of risk assessment are stated right up front, so no one is fooled. Then the least harmful—and most beneficial—way to achieve the community's goals can be chosen. This process, called “comparative risk assessment,” might provide useful information, though all risk assessments should be taken with a grain of salt.

Another process for assessing environmental impacts is known as the modified Delphi technique. Developed in the 1960s, Delphi has been used by government agencies and private businesses for making decisions about complicated, emotionally charged issues such as funding priorities for cancer research. It requires that the community and the authorities jointly select experts in various fields of knowledge, including particular knowledge of the community as well as scientific and medical expertise. Then these experts hold a series of open meetings with the community. This way, the community's questions get answered; issues like power, money, racism, justice and democracy can be raised; and the community can decide whether they trust what they've heard. The result could be a better decision based not just on science but also on the community's needs, goals and values.

Risk assessment boils everything down to numbers. As a result, risk assessment never asks questions like: Is this the best we can do? Is this fair and just? Is this good for the community? By suppressing such questions, risk assessment has become a powerful force against democracy. But this is changing. Communities are insisting on new approaches that allow many different kinds of knowledge to be considered, including the local knowledge that is so crucial for sound, just decisions.

Peter Montague edits Rachel’s Environment & Health News, which aims to provide grassroots community activists with solid information about the environment and health. Rachel’s is available free (in English and Spanish) via email; you can subscribe (and see all back issues) at http://www.rachel.org, or send a subscription request to erf@rachel.org.

Roots of Community Research

Primer on the legacy of participatory research partnerships
 

By Madeleine Kangsen Scammell

Community-based participatory research, or CBPR, is the product of several terms, including community-based research (i.e., research physically located in a community), action research, and participatory action research (PAR).[1] Each has its distinct roots, which have grown and intertwined. Today, the term CBPR is most often used in the field of public health in the context of collaborative, multi- and interdisciplinary endeavors, and partnerships (e.g., between grassroots community groups and academic institutions).

Most people describe CBPR by its characteristics or principles.[2,3] In a review of the roots of CBPR, Wallerstein and Minkler refer to two distinct historical traditions, Northern and Southern, to which the more recent concept of CBPR can be traced.[4] These approaches to research are elsewhere referred to as the Traditional and Radical forms of action research.[5]

Kurt Lewin, the social psychologist credited with coining the term “action research” in the 1940s, best represents the Northern, or Traditional, roots. Lewin was an early proponent of the use of scientific data by community leaders, hopeful that improved research facilities at universities would facilitate action research in social change endeavors. He also emphasized the importance of “intergroup relations”—i.e., the relations between researchers, those who are the subjects of their studies, and groups defined by area of expertise.

The Southern, or Radical, form of action research emanates primarily from the Southern hemisphere, or so-called Third World. The distinguishing characteristic of this tradition is an explicit challenge to the inequitable distribution of political and socioeconomic power. The Southern tradition defies unequal access to, and participation in, the production of knowledge in institutions of higher learning. Most representative of this tradition is the work of educator Paulo Freire from Brazil, Colombian sociologist Orlando Fals- Borda, and Rajesh Tandon, an engineer from India who now runs the Society for Participatory Research in Asia, out of New Delhi. Their teachings and philosophies share the conviction that social scientists have an important role in the movement for liberation of the poor from exploitation and hierarchical social structures.

If we were to distill the characteristics common to PAR and CBPR, they would include the participation of those affected by the results of research at every step of the process (i.e., defining the problem, designing the study, analyzing results), the equitable distribution of power among participants, and a solution-oriented outcome.

Roots of Community Research
Growth of Community-based Participant Research

One reason these distinct traditions may have come together in the form of CBPR in the United States is the emergence of the environmental justice movement, and the recognition of institutional racism and oppressive social and political structures. Several events have contributed to this recognition, such as the documentation of such inequalities by the U.S. General Accounting Office (GAO). The GAO's 1983 report, Siting of Hazardous Waste Landfills and their Correlation with Racial and Economic Status of Surrounding Communities, was conducted at the request of a North Carolina Congressman after hundreds of his constituents in Warren County were arrested for protesting a new PCB landfill in that rural African-American community. Results of the study confirmed what residents already knew: African Americans were disproportionately burdened by hazardous waste. Three of four federally designated hazardous landfills receiving waste from the eight southern states that comprise Environmental Protection Agency’s (EPA) Region IV were located in areas where the majority of the population lived below the poverty level, and was Black (in contrast to the general population throughout the eight states).

Following the GAO report, in 1986, the Emergency Planning and Community Right-to- Know Act (part of the Superfund Reauthorization Act) made it possible for community groups and interested individuals to conduct research documenting environmental injustices. Though the Act is reliant on self-reporting by industry and does not include all toxic chemicals or exposures, it facilitates the process by which residents can access information to track their own proximity to toxic waste and conduct their own community-based participatory research via these publicly accessible databases.[6]

In 1987, a year after reauthorization of the Superfund Act, the United Church of Christ’s (UCC) Commission for Racial Justice published Toxic Waste and Race in the United States, widely viewed as conclusively documenting how communities of color had become the "dumping grounds" for our nation's waste and pollution. One of the communities highlighted as an example of such injustice was East St. Louis, Illinois. That same year, with the help of State Representative Wyvetter H. Younge, a group of ministers from East St. Louis approached the University of Illinois School of Architecture’s East St. Louis Revitalization Project. They proposed a communityuniversity partnership that would conduct community- based research. While negotiating this partnership, the residents presented five conditions in writing to the university. Among them was the requirement that residents, not faculty or funders, have both control over the research agenda and involvement in every step of the research process. That was the beginning of the East St. Louis Action Research Project, which has since served as an example of how CBPR contributes to achieving the goal of environmental justice.[7]

As the grassroots environmental justice movement increased momentum, environmental health professionals responded. In 1993, the National Institute for Environmental Health Sciences (NIEHS), one of the 28 institutes that comprise the National Institutes of Health, launched a small grant program, Environmental Justice/Partnerships for Communications, with the goal of strengthening relationships among researchers, communities and health care providers. Soon after, they launched a similarly structured program, titled Community-Based Prevention/Intervention Research. In 1994 President Clinton mandated that all federal agencies achieve environmental justice by identifying and addressing disproportionately high and adverse human health and environmental effects on minority and low-income populations.[8]

Over the next two years, “partnership,” “collaboration” and “participation” became the preferred tools to fulfill President Clinton’s mandate. The U.S. EPA, Department of Housing and Urban Development, Department of Education, and the National Centers for Disease Control and Prevention all launched programs to address environmental justice, often via community-university research partnerships. A windfall of funding for partnerships and participation also came from private foundations, although they did not share the mandate of addressing environmental justice. Local, regional and international networks were launched that represented aspects of the Southern and Northern approaches to action research. Examples include the Community-University Consortium for Regional Environmental Justice (CUCREJ), the Loka Institute’s Community Research Network (CRN), and Community-Campus Partnerships for Health (CCPH).

In 1999 the National Academy of Sciences’ Institute of Medicine (IOM) published Toward Environmental Justice: Research, Education, and Health Policy Needs.[9] In this report, several pages were devoted to the topic of “participatory research” which was espoused as a method for addressing health disparities and environmental injustice. This was an important validation of community participation in an arena where epidemiological studies, and exposure and risk assessments—which traditionally allowed little opportunity for meaningful community input— had been the basis of policy decisions that contributed to environmental injustices. By suggesting participatory research, the IOM report called to question the dominant perception that the inclusion of those most affected by study findings threatened scientific objectivity. The year following the IOM report, NIEHS convened a meeting on the topic of best practices in “community-based participatory research,” officially adopting the language of participatory research to describe their environmental justice and community-based programs.

Protecting Participatory Research

As the number of governmental agencies embracing the language of participatory research continued to increase internationally, early proponents grew concerned that the concept was at risk of being coopted. For several decades Orlando Fals-Borda and others of the Southern tradition met at the World Congresses on Participatory Action Research. Writing after the 9th World Congress held in 2000, Fals- Borda described a “certain satisfaction” with “the progress of PAR from its early intellectual and political endeavors to its present institutionalization,” witnessed in part by the “heaps of books and magazines on the topic.” He also recognized the presence of representatives from the World Bank, and observed the, “overwhelming presence of Euro-American authors…. a striking change from the seventies, when there was a wide diffusion of the first monographs by participatory researchers and activists from Third World countries.”[10]

Fast forward to 2004. While co-optation may not be the reason behind persistent inequalities in exposures to environmental hazards, the ability to achieve the social change articulated by the civil rights and environmental justice movements has grown weaker, not stronger, in many parts of the United States and internationally. Laws have been written, but poorly enforced. And while the vocabulary of empowerment and justice is used globally, we have yet to realize equally empowered societies.

Let us remember the roots of CBPR—efforts to realize alternative forms of research and social change—so that in five, ten or 50 years from now, CBPR will not be little more than expert-driven research dressed in the day’s fashion, or even worse, a form of control and exploitation. Let’s ensure that the relationships between researchers and communities have not morphed to match the structures that have given rise to institutional racism and inequality—or that concerns for rigorous standards and legitimate methods override a vision of problem solving and social change. Instead, let’s envision a research infrastructure, including scientists, universities, and governments, with the capacity to be responsive to community concerns, engaging in genuine and empowering partnerships.

Madeleine Kangsen Scammell is a doctoral candidate at Boston University School of Public Health, Department of Environmental Health.


  1. For background on terms used in this article, see Minker, M. and N. Wallerstein, eds. (2002) Community-based Participatory Research for Health. Jossey-Bass
  2. Israel, B. et al. (1998) Review of Community-Based Research: Assessing Partnership Approaches to Improve Public Health. Annual Review of Public Health. 19:173-202.
  3. O’Fallon, L. et. al. (2000) Improving public health through community-based participatory research and outreach. Environmental Epidemiology and Toxicology. 2:201-209.
  4. Minkler, Meredith and Nina Wallerstein, eds. (2002) Community-Based Participatory Research for Health. Jossey-Bass.
  5. O'Brien, R. (2001). Um exame da abordagem metodol?É?í?Ǭ?gica da pesquisa ação [An Overview of the Methodological Approach of Action Research]. In Roberto Richardson (Ed.), Teoria e Pr?É?í?Ǭ°tica da Pesquisa Ação [Theory and Practice of Action Research]. João Pessoa, Brazil: Universidade Federal da Para?É?í?Ǭ?ba (English version) Available: http://www.web.net/~robrien/papers/ar%20final2.html
  6. An example of how such data has been used, Unequal Exposure to Ecological Hazards: Environmental Injustices in The Commonwealth Of Massachusetts by Daniel R. Faber and Eric J. Krieg (2001) A report by the Philanthropy and Environmental Justice Research Project, Northeastern University.
  7. http://www.eslarp.uiuc.edu/
  8. Executive Order 12898: Federal Actions to Address Environmental Justice in Minority Populations and Low-Income Populations.
  9. Available for purchase and in pdf format on the Internet: http://www.nap.edu/catalog/6034.html
  10. Fals-Borda, Orlando. (2001) From Cartagena to Ballarat: A Report on the Joint Fifth World Congress on Action Learning, Action Research, and Process Management and Ninth World Congress on Participatory Action Research. Guest Editorial. Systemic Practice and Action Research, 14(2):125-134

Good Science

Principles of community-based participatory research
 

Across the country, Environmental Justice communities are faced with an urgency to address life-threatening pollution and health assaults. The survival of these communities has long been jeopardized by a legacy of unequal protection and scarce resources and capacity. Adding insult to injury, community-initiated efforts to improve their health and environment have often been hindered by scientific experts and expert agencies.

One of the strategies employed by communities under toxic assault is to “bring in the experts”—that is, to convince federal agencies, such as the U.S. Environmental Protection Agency (EPA) or local experts to use the technical methods of science to address the community’s concerns. Unfortunately, such efforts at “collaboration” have often resulted in the community being left out of decision-making, delays in addressing the problem, and findings that do more to roil the situation than to improve the environment in which people live.

A good example of this phenomenon is the implementation of Community Advisory Groups (CAGS) by regional offices of the EPA. Too often, CAGS have been comprised of professionals and others who were removed from the immediate impacts of environmental pollution, which had the effect of excluding from decision-making those who were primarily affected by toxics. In other instances, sham organizations have been formed by both public and private entities to direct activities done in the name of impacted communities in order to apply for grant monies. Another strategy have been the formation of alliances, in some instances with community people, in order to neutralize their involvement.

Given that the national research institutions have been far too meek in making the linkage between environmental exposures and poor health, the potential power of science to assist communities has been limited. For instance, communities across the country have accused the Agency for Toxic Substance Disease Registry (ATSDR) of being inconclusive by design. Assessments by this and other scientific agencies frequently conclude that exposure to a level of chemical and/or toxic metal found in a given community is not likely to result in bad health effects. However, even when such chemicals are present in a community and residents’ illnesses mirror potential health effects of those chemicals, the tendency of the EPA, ATSDR, state regulatory agencies, and health departments is to downplay potential associations between exposures and adverse health outcomes, and to resist taking precautionary action to address the concerns of community residents.

Risk assessment methods used by the regulatory agencies are often to blame. However, there are other contributing factors. I believe that the current “top down” research model has narrowed the scope of scientific research and robbed it of crucial knowledge. In this approach, only the knowledge of the formally trained expert is considered valid and reality is described by empirical and testable results. Those that are affected by a given problem are by definition “biased” and therefore their views are considered suspect or are outright discounted. In this paradigm of scientific inquiry, the voices of those experiencing the problem are excluded and consequently, science (scientists) misses data (experiences) that describe a deeper and more expansive understanding of the problem.

A New Paradigm: CBPR

An effective model of research that can compensate for the shortcomings of traditional top-down, outsider-dominated environmental and health research is community-based participatory research, or CBPR. CBPR provides the Environmental Justice community with an opportunity to build a new research paradigm. Simply put, CBPR is a method that brings the knowledge and expertise of communities together with that of formally trained researchers to find answers or to intervene to address a problem or concern. CBPR combines research with action. Under the CBPR framework, the collaboration of communities and experts must be equitable, transparent, and ethically sound, and stem from community-articulated problems. The critical component in any CBPR project is the creation of a fully participatory partnership between community members and technically trained providers and investigators that produces “good science,” and promotes community-defined problem solving.


11-2 Good Science
 

I first learned about CBPR from the Southeast Community Research Center (SCRC), a south-wide center based in Atlanta where I now work as the programs and partnership coordinator. As I learned more about CBPR, I immediately thought about the countless communities with which I have worked over the past 15 years. They were frustrated with health assessments and health studies conducted in their communities, and disappointed with the failure of experts to link pollutants and prevalent sicknesses and deaths in their communities. I recognized that CBPR could be a systematic way to find the answers to questions and the solutions to problems relating to health, the environment, and to social and economic marginalization.

Through the SCRC, I’m now working on building partnerships in rural communities in Alabama to eliminate health disparities; with communities in Georgia to address environmental health; and in Mississippi where a broad coalition of community leaders, health and environmental researchers have devised and begun to implement a community-wide strategy for health equity and justice. The SCRC is also building partnerships with Historical Black Colleges and Universities (HBCUs) and communities throughout the South to address health disparities. There are now eight researcher/community partnerships, based on CBPR principles, under development to address the horrible health outcomes experienced by African Americans in Georgia, Alabama and Jackson, Mississippi. (For information, visit the SCRC website at www.CBPR.org.)

In this work, SCRC finds that when the strengths and resources of both technical experts and community experts are brought to bear, new and productive avenues open up for understanding problems and the development and implementation of solutions. Unlike conventional research methods, which discount the knowledge of the non-expert, we find that our efforts produce a fuller statement of the problem, generate new and innovative solutions, and result in fuller participation by all involved.

Community Dialogue Sessions
The SCRC CBPR process begins with community Dialogue Sessions because marginalized communities too often do not have the resources to come together in facilitated and documented dialogue about community health and other problems. The Dialogue Sessions provide the space for community members and groups to come together to define and document the issues that they want to address. In subsequent Dialogue Sessions, community members learn how to use their expertise in a CBPR format—what might be termed “CBPR 101.” Popular Education methods are utilized to promote organic involvement of the community as the first step to community problem identification and solving, and to ensure that power is located and enhanced in the community.

The Community Dialogue Ssessions is the foundation that ensures communities come to the table prepared to systematically state and stand for their views and experiences as the project takes shape. While this process does not eliminate the resource and power divide, it puts it squarely on the table for discussion and problem solving.

Partnership Building
The overwhelming majority of environmental justice community groups are grossly under-resourced. The resource dearth materially diminishes a community’s readiness to utilize effective strategies. When marginalized communities do not have the capacity to participate fully in community/research partnerships, they are vulnerable to distortion of their view of the problem and a real solution. Through the development of structured partnerships, which recognize and address systemic power imbalances and require an agreed-upon structure that deals with both the technical and political elements of partnerships, community power is protected.

The Dialogue Sessions are followed by joint community/ researcher workshops. In these workshops, analysis of the advantages of partnerships and the barriers to achieving effective partnerships are explored, culminating in the development of principles that serve as a framework for an equitable partnership as defined by the community. In addition, reports from the Community DS are reviewed and concerns are prioritized. The workshops are followed by the establishment of community and multi-disciplinary research teams to pursue CBPR projects that develop research questions and interventions, and plan for fundraising.

Tool for Change
CBPR is not the panacea for poor and marginalized communities: political power and social and economic justice are the goals we must reach if we want a society in which the children of every neighborhood can play and live in a healthy environment. However, CBPR is one more tool, and a potentially effective one, for communities to employ to fight for the health and well-being of their neighborhoods. The skepticism about research in the Environmental Justice community must be addressed. We have been “studied to death,” yet many communities never reach an understanding of the full impact of pollution on the public health and quality of life.

Science and technology are powerful tools, but our current inability to employ them fully and holistically limits their use and effectiveness. CBPR provides an invaluable opportunity to deliver truly “good science,”—science that helps us determine ways to understand and improve our health and quality of life.

Connie Tucker, an activist for more than 30 years, became a leader in the EJ Movement in its early stages and served for 11 years as director of the Southern Organizing Committee for Economic and Social Justice, one of the five major grassroots EJ networks. She presently serves as the programs and partnership coordinator for Southeast Community Research Center (SCRC) in Atlanta.

Douglas Taylor, Ph.D., is the founder and director of SCRC. His research focuses on ethics in science and methods to democratize decision-making on scientific and technical questions, particularly on health and environment topics.