Implications of the GC-HARMS Fishermen’s Citizen Science Network: Issues Raised, Lessons Learned, and Next Steps for the Network and Citizen Science

Abstract

This paper is intended to complement our extended documentation and analysis of the activities of the Gulf Coast Health Alliance: Health Risks related to the Macondo Spill project Community Outreach and Dissemination Core entitled, “Building and maintaining a citizen science network with fishermen and fishing communities after the Deepwater Horizon oil disaster using a Community-Based Participatory Research (CBPR) approach.” We discuss nuances of CBPR practice, including trust-building, clarification of stakeholder expectations, balancing timelines and agendas, cultural fluency, and the importance of regional history—political-economic context, regulatory practices, and cultural life-ways—in creating social dynamics that overarch and underpin the entire process. We examine the unique role of knowledge-making hybrid structures like the project’s Fishermen’s citizen science network and compare/contrast this structure with other models of participatory science or deliberation. Finally, we reiterate the importance of environmental health literacy efforts, summarize project outcomes, and offer thoughts on the future roles of collaborative efforts among communities and institutional science in environmental public health.

Introduction

Sullivan et al. have published a paper addressing, in addition to the formidable logistics, management, and communication challenges posed by the citizen science network created to advance the goals and objectives of the Gulf Coast Health Alliance: Health Risks related to the Macondo Spill (GC-HARMS).¹ The GC-HARMS project was supported with grants from the National Institute of Environmental Health Sciences (NIEHS). It studied environmental public health impacts on U.S. Gulf Coast fishing communities in the aftermath of the Deepwater Horizon (DWH) oil spill disaster. As reported, project scientists and their communication-dissemination support team, community-hub coordinators, and community hub-based citizen science networks of fisher-folk grappled with many issues inherent in the practice of Community-Based Participatory (or Community-Engaged) Research. We now present a companion paper to that initial publication and probe how decisions and actions of the GC-HARMS citizen science network and overarching Community Outreach & Dissemination Core (CODC) sought to operationalize the values and practice principles of CBPR. We explore how the scope and range of GC-HARMS, in both cultures represented and regional geography, clearly emphasized the complexity involved in balancing diversity of identified needs, perceived priorities, attitudes toward collaboration with institutional scientists, and multiple local community agendas among so many regional actors.

The impacts of regional history as framed and interpreted through longstanding environmental justice (EJ) struggles, entrenched and evolving social-political dynamics, prior and current regulatory protocols and procedures, and past experience with studies deployed during regional crises (primarily hurricanes) were seen as significant factors in setting the tone, tenor and format of CODC communication channels. This interaction of science with dynamic cultural circumstances was especially evident in terms of creating and presenting jargon-free and culturally literate risk messaging that evolved as the science became more precise.

The unanticipated impacts of working with experienced local environmental public health and justice advocates in crafting these messages—illuminating the importance of a nuanced approach to cultural diversity, and expanding the conceptual framework of all project partners—also receives scrutiny in our survey of outcomes and ramifications. The scrupulously applied philosophical standards and keen cultural insights of the EJ contingent brought traditional CBPR values such as transparency, mutual respect, deliberative decision-making, and inclusiveness into sharper contextual focus, and helped to maintain a working balance-of-power between expertise and local knowledge in ways unanticipated at the onset of the project.

Finally, the discussion will explore some macrolevel implications of project outcomes for the practice of CBPR, and the developing and closely related fields of Environmental Health Literacy (EHL), Citizen Science, and hybrid knowledge-making schema that meld expertise-driven methodologies with local knowledge and models of inclusive deliberation.

Accommodating Diverse Needs, Expectations, and Agendas

In a project that encompassed so much geography and brought to the table so many diverse community-based organizations, some dissonance in issues and advocacy agendas would seem to be inevitable. The fishermen who actively participated in the network were most concerned about the safety of their catch, whether the fishery was healing after the oil subsided, and how scientific findings might influence public perception of the Gulf brand in marketing their seafood. One of the community-based sampling hubs, Alabama Fisheries Cooperative, was actually founded as an advocacy vehicle for many issues related to economic justice for fishermen. In general, the hub communities were concerned with the social-economic impacts of the DWH crisis, especially during the first six months to a year of the disaster when Gulf waters were closed to both fishing and oil exploration/production and regional unemployment in these essential industries was high. Community residents also focused on the need to quickly define and effectively communicate the risks involved with seafood consumption over a lifetime of exposure. All of the community hubs were particularly concerned with the special risks for vulnerable segments of their populations: pregnant women, nursing mothers, young children, elderly, and individuals with preexisting health issues. The economic hardship involved in replacing readily accessible food sources like shrimp, crabs, and oyster with grocery items, if such actions were deemed necessary, was also a high priority.

Within the science teams, toxicological efforts focused on characterizing toxicity for a suite of relatively unstudied petrogenic polycyclic aromatic hydrocarbon (PAH), developing biomarkers of exposure and a deeper understanding of the metabolic transformations of certain PAH within the human body, while the epidemiological effort centered on developing detailed health profiles of three diverse hub communities, and teasing out associations among health indicators and PAH levels detected in human blood samples. As observed in other community research contexts, these concatenated agendas were both a source of dynamic tension and an opportunity for understanding different points of view and their context.²

Against this background, the CODC arm of the project developed a flexible approach to communicating risk: a message originally presented in general, qualitative terms, and as the science became less uncertain, risk messaging became more defined and ultimately more quantitative, while treading a mid-ground between overly optimistic or unduly alarmist updates on the evolving risk assessment.³ Balancing these divergent issues, agendas, and social dynamics required many degrees of empathy and patience and a keen sense of timing on the part of all concerned.⁴ Throughout the process, our collective efforts were catalyzed and animated by the practice values of CBPR: maintenance of trust, respect, mutuality of interests, inclusion, and reciprocity.⁵

Understanding the Cultures of Fishermen, Communities, and Science; Setting That Understanding Into Motion

The perspectives of both the network fishermen and their communities derive from a context of multiple environmental stressor impacts, gradual erosion of economic opportunity (particularly among fishermen), and unmet needs from a decade plus of strong cyclonic storms and damage due to land loss, sea level rise, saltwater intrusion, and other factors.^6–8 One GC-HARMS partner, Bayou Interfaith Shared Community Organizing, was recently recognized by Environmental Protection Agency (EPA) Region 6 for developing the concept of the northern Gulf coast as a Regional EJ Community.⁹ Neighborhoods, communities, and regions facing cumulative risk and multiple stressor impacts and health disparity burdens diverge from the mainstream in their orientation to the urgency of environmental health problems and necessity of solutions.¹⁰

In contrast, the practice of science is careful and painstakingly incremental and also tends to isolate public health issues and processes of interest to science from their social/political/historical contexts to ensure unbiased consideration and control for variables.¹¹ Reconciling community urgencies with the relatively slow epistemic processes and carefully managed release of data and interpretation surrounding new science introduced another complex dynamic with many cross currents into the project’s context. A full project meeting of community hub coordinators, fishermen, and scientists was convened in 2012 to consider these issues, share perspectives, and develop a conceptual framework through which the diverse elements of the project might serve as mutually supportive allies.¹² This dynamic was revisited many times throughout the course of GC-HARMS by Project 1 (Community Health Assessment) scientists and CODC personnel,¹ hub coordinators, and fishermen from partner communities to “clear communication channels” of ambiguity and address trust and transparency issues before positions hardened into distrust.⁴

Possible Impacts of Citizen Science Outreach and Participation on the Social Context That Backgrounds the Project

Working with network fishermen had a nuanced effect on the tenor and content of local dialogue regarding the DWH crisis, energy industry practices, access to health care in the region, resilience, cumulative risk, and risk by proximity to industrial facilities. Conversations on jetties, in marinas and fish-processing “houses,” and out on the water, peppered by mention of environmental health ideas, continued during Fishermen Forums, influenced public dialogue and risk perceptions. Word of mouth as well as targeted outreach by community hub coordinators were strong factors in bringing citizens to the Forums and fishermen into the sampling network.

Just as tools like the Louisiana Bucket Brigade Crisis Map¹³ (discussed further below) enhanced awareness of the scope of the DWH impacts through social networking, this peer-to-peer, group-to-group, communication kept DWH health issues on the front burner. The urgency and volume of this conversation pressured state, federal, and responsible party efforts to increase the intensity of their efforts to persist in and refine their recovery efforts. There were so many civil society organizations engaged in organizing and advocacy after the DWH spill, that no single group can reasonably be designated as the prime mover. But one can easily imagine that without the intense collective pressure and scrutiny from regional fishermen, fishing communities and their allies, and the non-profit- and university-based environmental health sector, the decision by the Bureau of Safety and Environmental Enforcement (federal) to subject high-risk energy exploration projects to additional levels of scrutiny might never have materialized.^13–15 Unfortunately, many of these regulations have since been rescinded as redundant or are moving in that direction under the current EPA administrator.^16–18

Sustained citizen interest in the fate of benthic layers of oil residue, the ecosystem it covers, and the health impacts of oil dispersants and oil/dispersant mixtures may have had a similar effect, providing additional momentum for ongoing research with that focus.¹⁹ The formidable challenges involved in mobilizing and deploying research teams in response to environmental health impacts of major disasters prompted NIH, NIEHS, U.S. Health and Human Services, and the Library of Medicine to collaborate in developing an extensive toolbox of resources for disaster research, including pre-approved research protocols and design templates. These instruments will enhance institutional capacity for time-sensitive sampling and research during future disaster events.²⁰

When Uncertain Science Meets Risk Communication and Community Advocacy

Uncertainty regarding the interpretation and significance of scientific findings, and the consequent disagreements and debate essential to the creation of new scientific knowledge are accepted standards of practice within the scientific community. Viewed from a community perspective, however, this process often appears at best, ambiguous, and confusing, and at its worst, self-serving, unengaged, and insufficiently motivated: the behavior of a privileged elite with no skin in the community’s struggle to cast off its cumulative burden of environmental risk.¹¹ As in the case of hydro-fracking and its possible impacts on aquifers and the health of drillers and residents living near production platforms,^21–24 or the degree to which disease outcomes are causally related to petrochemical manufacturing or gasoline refining,^25,26 or the human health and justice impacts of climate change,²⁷ environmental health science and its translation into risk guidelines and public policy are quite often lightning rods for controversy, skepticism, and political opportunism.²⁸

And the foci of GC-HARMS research and dissemination carried their own burden of unknowns from the onset; a less than exhaustive list includes (1) What does scientific disagreement on acceptable levels of risk mean to the public? (2) How are risk odds ratios understood and how do these odds inform personal risk decisions? (3) What factors will have the most effect on public risk perception and how will these factors be amplified during an environmental crisis of such major proportions? (4) How will an ongoing PAH metabolites study affect seafood consumption risk assessment and how precautionary should early stage assessments be? (5) Because of the lack of a pre-DWH baseline for target compounds in edible tissue of targeted seafood, how much of the detected PAH load will be due to DWH and how much could be attributed to natural seepage and/or environmental exposures given the area’s industrial context? (6) How much bioaccumulation (or not) will be detected in sampling target species? (7) How to balance ethics/obligations in CBPR risk communication relationship with partner communities against the validation needs and timeline of the scientific process?

Anxiety or outright conflict may be especially acute when scientific inferences generate policy recommendations with social/economic ramifications for industrial practices, detection and quantification of economic damage, reparations for “denial of resource use,” and ongoing regulatory monitoring and enforcement.²⁹ Or in the case of network fishermen, when scientific findings may have negative impacts on the commercial value of seafood taken from the Gulf.^3,30 As previously stated in the discussion of the DWH social-political context, the Gulf communities in GC-HARMS were concerned with both health impacts of the spill—human and ecosystemic—and the possibilities of just compensation for economic damage to the livelihood of fishermen and their families.^31,32

Precautionary concerns stemmed from the ongoing nature of petrogenic PAH metabolite research (hazard characterization and toxicological assessment) and the fact that GC-HARMS scientists used a cutting-edge methodology that continues to be refined (CALUX bioassay)³³ in determining relative toxicities of individual petrogenic PAH target compounds and PAH mixtures to set species-specific consumption levels of concern—as hazard characterization segues into exposure and risk assessment. The demands of methodology and standards of scientific certainty postponed rapid development of a definitive seafood consumption guideline.^33–36

The latency in obtaining data and its equivocal nature, on occasion, frustrated some project partners, particularly those groups who wanted to use science strategically, as a component of their advocacy for regional fishers and increased regulation of energy industry exploration practices. Fishers within the citizen science network were primarily concerned with the aggregate average PAH levels found in their own site-specific catch and information on observed decreases in detected PAH over time. However, fishers who were more actively connected with community hub organizations and other local issues often developed a more comprehensive view of the data’s scope and uses.⁴

Risk perception and trust/transparency issues among fishermen were more closely tied to the timeliness of data reportage than the actual results: the longer the lapse between sampling and results, the more drastic the perception of risk, or perceived lack of transparency, and the less trust they were willing to invest in the process.^36,37

History Is Important: The Overarching Socio-Political Dynamic May Be Subject to Abrupt Shifts in Focus, Tone, and Intensity

Developing a working coalition of outsider scientists (supported by federal funds), EJ organizations, coastal fishing communities and independent fishermen involved addressing some deeply held resentments from earlier encounters. For example, the introduction of Turtle Excluder Devices to safeguard populations of loggerhead and Kemp’s ridley sea turtles during shrimp trawling initially pitted shrimpers against conservationists, environmental activists, and evidence-based recommendations from the National Academy of Sciences. These groups eventually reached a rapprochement on the issue with passage of the Sea Turtle Conservation Act (1989) banning shrimp imports from countries that won’t use Turtle Excluder Device. But the course of this issue could be considered representative of the resistance with which regulatory measures by EPA, NOAA, or U.S. Fish & Wildlife are often met.^38–40

Many EJ communities have found both federal and state environmental agencies ineffectual in protecting fence-line residents from the health impacts of refining and/or chemical production emissions or unhealthy proximity to industrial waste storage and treatment facilities.⁴¹ EJ victories at Norco—Diamond LA and Convent LA (Shintek campaign),⁴² and continuing resistance to expansion of the U.S. Liquids mixed waste treatment facility in Grand Bois LA, trumped industrial science, which minimized risk to citizens. The longevity and mutually supportive nature of these efforts illustrate the tenacious, grassroots-oriented, and intricately networked character of environmental activism and health advocacy along Louisiana’s Mississippi River Chemical Corridor (aka “Cancer Alley”), and by extension, much of the north Gulf coast.^41,43,44

The Louisiana Environmental Action Network, the Lower Mississippi River Keeper and community scientist Wilma Subra respond frequently to industrial accidents and releases, documenting the potential for exposure with multimedia field samples and interpretive white papers, while using these incidents and the relationships they have forged as opportunities for building community awareness of risk. Finally, the Gulf region was literally inundated with research teams after Hurricanes Katrina and Rita but, despite this massive uptick in environmental health, health disparities and health-oriented research, the area still bears physical and emotional scars from those catastrophes while many basic needs remain unmet.^31,45

To stay true to the practice principles of CBPR, it was essential to get more than a quick gestalt of these historical currents and ongoing environmental issues along the coast before undertaking the delicate process of coalition-building that resulted in GC-HARMS. It was equally important to meet community fishermen where they lived and worked, understanding their issues with fishing closures, fuel costs, the Gulf Coast Claims Facility, and competition from foreign fisheries before they would seriously entertain the idea of working with scientists they did not know, who lived out of state, and had no prior experience with fishermen and their challenges.⁴⁶

Models of Participatory Science, Environmental Health Science Literacy, and Deliberative Processes: Multiple Visions, Convergent Conclusions

In “Acting in an Uncertain World: An Essay on Technical Democracy,” Callon, Lascoumes, and Barthe⁴⁷ unfold the concept of hybrid forums as an inclusive response to levels of complexity in many realms of public policy that cross race and class divides, knowledge disciplines, and technologies. Their use of the term forum pertains to the creation of open, multivoiced democratic processes where expertise or class-based privileges are denied their traditional leverage. Hybrid describes the accumulation of perspectives, issues, and values that may be brought to bear on solving problems with many stakeholders and a variety of possible solutions. Environmental health issues are prime examples of problems that benefit from such an approach because they affect human health and the environment from so many angles: multiple stressors community, localized neighborhood impacts, health disparities, social-economic factors, density of point and mobile pollution sources, risk perceptions, historical patterns of action or inaction in addressing health, and quality of life impacts. All of these factors are embodied in the concept of cumulative risk.^10,47 Within this hybrid forum framework, CBPR and citizen science could play major roles in framing and motivating research.

The CBPR approach to community health research implies this same comprehensive perspective and seeks to maximize active, informed, and direct participation of stakeholders. This approach privileges the active role of communities for whom the issues on the table are a lived reality. This active community role pervades all aspects of the research cycle, but most particularly in framing the research question, data collection, analysis (as possible) and interpretation of research findings (incorporating the full range of perspectives), and incorporating the research into just and effective public policy. In addition, community-level participants will often use research results to enhance the effects of their own advocacy campaigns.^5,48 This inclusive, consensus-seeking hybridized structure has become standard practice for conducting Health Impact Assessments, and as a working format for special EPA bodies such as National EJ Advisory Council, or in EPA “Listening Sessions” that collect a spectrum of public and professional input on pending rule-making actions—that is, chemical security, coal-fired power plant emissions, and refinery emission control technology regulations. It has also been integrated into some municipal planning processes in U.S. cities, such as San Francisco.^49,50 With more limited scope, active and informed community involvement has become increasingly important in reviewing Environmental Impact Statements for municipal projects such as ports expansion, transportation, and siting of industrial facilities.⁵⁰

In terms of environmental health research, which invariably involves a complex of community issues at some level, the CBPR umbrella parallels this hybrid forum approach. CBPR values and practice principles are reflected in the hybrid focus on extending the scope of inclusion, concern for autonomy of voice, recognition of issues as complex interactions of multiple factors, and the need for community experts to ground-truth science and policy. Community members of the hybrid forum will ask uncomfortable questions that may contain references to “sacrifice zones” or the concept of justice and, when appropriate and necessary, may seek to reconfigure the traditional power dynamic that normally esteems (and insulates) expertise and demeans (and marginalizes) citizen science, community history and local knowledge as naïve, biased, and unscientific.^51,52 This CBPR-citizen science knowledge-making hybrid contrasts with Community Engaged Research, an approach that often enlists communities for more limited task-based participation in research designed by experts, pursuing research questions of primary interest in the realm of the professional researcher.⁵³

These parallels are also borne out in Bonney’s model for public participation in scientific research. Projects are described as contractual, contributory, collaborative, cocreated, or collegial, depending on the level of direct citizen science involvement in framing research questions, developing hypotheses, collecting and analyzing data, and interpreting and disseminating the results of the analysis.⁵⁴ According to this framework, CBPR guided research would seem to fall under the rubric of cocreated or collegial participation with an emphasis on community involvement in concept, execution, and dissemination from the ground up. The GC-HARMS fishermen’s citizen science network would probably fall within the typology’s permeable collaborative/cocreated categories with considerable overlap.

It should be noted that this citizen-science model developed out of public participation in what have been primarily natural science projects, some of which used crowd-sourcing to generate data, while environmental health science projects that employ a strong citizen science component often focus on community-identified exposure sources and disease outcomes and are driven by an urgency for scientifically informed policy change that reduces these negative outcomes.⁵³

A basic list of environmental health projects with a strong citizen science component should at least include (1) Southern California Neighborhood Assessment Teams,^55,56 (2) The Houston/Galveston Citizens Air Monitoring Project,⁵⁷ (3) Project COAL (Houston, TX),⁵⁸ (4) collaborations among communities in the “Moving Forward” Network/Ports—Goods Movement alliance (e.g., Ironbound Community Corporation, Air Alliance Houston, and Texas EJ Advocacy Services (t.e.j.a.s.), the EPA, and the Global Community Monitor (Richmond, CA) to monitor particulate matter levels in their communities.⁵⁹

Another project, structured as an interactive web-based tool rather than a, more or less, formalized field science process, was (5) the Crisis Map: a citizen science epidemiological mapping project developed by the Louisiana Bucket Brigade and Geographic Information System mapping students at Tulane University. The Crisis Map tracked visual and other sensory evidence of crude oil, habitat damage, affected wildlife, and self-reported health effects along the Gulf coast in real time during the capping and abatement stages of the DWH crisis.^13,60

Citizen science enhances the value of scientific research in a number of ways. Collaboration with citizen scientists expands the epistemological parameters of the research. Phillip Kitcher calls this democratic conception “a family of visions” and refers to the logistics of knowledge-making within this paradigm as “a division of epistemic labor.”⁶¹ Additional contextual knowledge—ecosystem, fishing conditions, social dynamics within the communities—often included experience beyond the ken of professional researchers, opening the research question to a wider (more inclusive) angle of scrutiny.⁶²

The citizen science approach fostered greater procedural and intellectual democracy within the GC-HARMS process. This parallels a Freirean orientation to CBPR that emphasizes transparency and trust and maximizes inclusion.⁶³ The GC-HARMS fishermen’s citizen science network together with the community hubs was able to exploit grassroots strategies to boost the effectiveness of project outreach and reduce field science costs. This was especially crucial for risk communication along the peer-to-peer model and increased the capacity of the project to transmit and receive information as a multidirectional communication system connecting the community and research ends of the project dynamic.⁶⁴ The structure of the network also promoted greater awareness of the range of other issues shared by coastal communities but not directly related to the DWH oil catastrophe.^62,65

The citizen science component of GC-HARMS was a substantial factor in promoting the EHL goals of the project. The training in basic toxicological concepts and sampling protocols central to the project gave network fishermen the tools to understand and apply their new knowledge at the work sites and enough macrolevel grasp of how their activities feed into the GC-MS process to prioritize fishing areas for sampling and visually evaluate the results. A version of Bloom’s Taxonomy of Educational Objectives recently adapted to model the process of acquiring and applying environmental health knowledge would probably describe their grasp of project-related environmental health principles—measured in actions and outcomes—as straddling the Application/Analytic rungs in the Bloom progression.⁶⁶

Citizen Science and the CBPR Research Approach Directly Enhances EHL

The importance of EHL in capacity-building has always been a central tenet of environmental science oriented CBPR practice and a necessary growth factor in evolution of community organizations that seek to ramp up the impact of their advocacy efforts. The pedagogical components of GC-HARMS citizen science were intended to increase the capacity of network fishermen, community hub coordinators and project scientists, and other personnel to work collaboratively within the GC-HARMS engagement—field science—dissemination dynamic.^67,68 The hazard identification, sampling and data interpretation skills, and an overall awareness of how science might be used to promote environmental public health are transferable to the context of future environmental threats, as is the possibly of sharing resources within the network.^69,70 But in the absence of continued funding, it will probably be difficult to maintain the integrity of this (initially) ad hoc network brought into being by the DWH crisis.

Some community partners who participated as both sampling and clinical intervention hubs have become more aware of the connections among environmental and health disparities burdens and instituted organizational programs to address obesity, diabetes, stress, and mental illness. Network fishermen and their families will have the opportunity to participate in these programs though they are not a direct outgrowth of work within the sampling network. The Louisiana Environmental Action Network, Bayou Interfaith Shared Community Organizing, and the Alabama Fisheries Cooperative continue to advocate for a stronger “discipline of public interest science,” a greater “front-loaded role” for their groups in framing research questions related to monitoring and improving the health of the fishery, and maintaining ties within the network.⁷⁰

EJ Gives GC-HARMS Strong Philosophical and Ethical Core Principles

One factor not considered in the early stages of planning GC-HARMS was the impact of working with experienced EJ advocates on the environmental health awareness of network fishermen. CBPR values set the tone and framework for collaboration, and the efforts of the fishermen’s citizen science network dispelled what Marvin Legator termed the “Myth of Exclusivity” that effectively barred the “uncomprehending public” from access to the data and techniques of science.⁷¹ But working alongside esteemed members of the Gulf Coast EJ advocacy community expanded the vision of fishermen and scientists, alike. This added scope encompassed the personal impacts (on families and individuals) of public health and sociological concepts such as disproportionate exposure, risk by proximity, the cumulative nature of community risk burdens, and marginalization of communities by race, language, and class. Close contact with the world view of EJ allowed all participants to absorb and contextualize stories from the long history of struggle for environmental health and economic justice in the Deep South.^71,72

The GC-HARMS community team was uniquely blessed with a wealth of prior EJ experience and tangible accomplishments. The Louisiana Environmental Action Network, the Center for Environmental and Economic Justice, the United Houma Nation, and the Federation of Southern Cooperatives (not officially part of the project, but closely tied to development of the Alabama Fisheries Cooperative), and Bayou Inter-Faith Shared Community Organizing have been active and vital in the region for decades. These seasoned EJ organizations brought to the project a deep sense of commitment to community (local and regional), an awareness of potential traps and pitfalls, a model for working respectfully with oppressed communities, and a working vocabulary that diverged from that of both fisher folk and research teams.

Throughout the course of GC-HARMS, the community-based EJ perspective brought additional concepts into the environmental public health research practice. Seminal ideas such as the precautionary principle and its relationship to uncertain science and risk,⁷³ and Robert Bullard’s revised framework for EJ that describes environmental health and equity as non-negotiable human rights and makes regulatory reform and proactive public health intervention as the default prevention strategy for reclaiming these rights.⁷² Their influence informed work within the project with an overarching human rights framework that parallels the sustaining vision of the Civil Rights movement.⁷⁴ This framework kept the GC-HARMS project grounded in local goals and values, and the research effort closely meshed with local knowledge. This close calibration of expertise to democratic process, as in the most Freirean strains of CBPR, pushed back against any reversion to privilege-based hierarchy or science–community relationships based on “well-meaning [but still toxic] democratic elitism.”^52,63

Sustainability of Citizen Science Involvement: Maintaining Momentum Is no Easy Task

The most problematic aspect of working with the fishermen’s network (after timely data reportage) has been sustainability: what happens to this group when the NIEHS funding is exhausted, the formal engagement processes finished, and the community-based hub organizations become immersed in other aspects of their own programs? Participation in the project did deliver some tangible rewards for network fishermen: data on their catch, a scientific and rights-based EJ framework for interpretation of results for this project. And their closer acquaintance with the motivations and methods of science may predispose them to become more readily involved as informed participants should future opportunities for citizen science present.⁷⁵

But because results still contain uncertainties and the actual exposure risks associated with eating Gulf seafood are not fully clarified, some participants experienced the same discontents, lingering skepticism, and frustration with the outcomes observed in community research efforts where closure was problematic.^3,76 Although the science and community hub poles of the project made strong efforts to manage outcome expectations, provide jargon-free information on findings, and offer suggestions for continuing their engagement on a local/regional level, these efforts were adequate for some, but not everyone, and this is not unique to GC-HARMS.³ Other community research projects involving some type of disproportionate exposure, social-economic hardship as a consequence of an exposure or disaster, hazard characterization, risk assessment, and possible documentation of a responsible party have reported similar outcomes.^5,45,76

Political scientist, David Comacho, describes the process of how people who have been politicized by their lived realities—and the DWH disaster did politicize the Gulf coast, deeply, quickly, and for years after—relate to actions, programs, or forming network relationships that bear the promise of addressing the negative consequences of that experience. He calls this the 3-P proposition, which deconstructs as follows: Process to achieve Product entails some level of Participation.⁷⁷ For GC-HARMS, process represents the EHL and sampling protocol training, which self-selected fishermen elected to participate in because they viewed the possible product outcomes as necessary and/or desirable.

Reviewing ground we have already covered within the framework of Comacho’s model, these desirable outcomes included (1) monitoring their catch for safety (with timely and frequent reportage from scientists), (2) learning more about the science involved in measuring pollution impacts on the ecosystem, (3) learning a skill set (following sampling protocols, mapping sample sites), (4) receiving a stipend for participation, (5) tracing PAH signatures in seafood back to the crude oil that escaped from the Macondo well, (6) receiving a clean bill of health for their own catch based on the sample results, and (7) reaffirming the commercial potential of the “Gulf brand” of seafood after the DWH made everything suspect. It should be noted that none of these product items are mutually exclusive, and the fishermen self-reported #1 as most compelling (the actual reason they chose to participate), with #6, #7, and #3 also prioritized as important; #4 was a sine qua non for the project as a whole, due to the realities of personal finances, but #2 was deemed least important, and #5 became the source of some contention.

Comacho observed that actors often withdraw from a participatory process when desired products do not materialize within what they consider a reasonable time frame. This withdrawal may come abruptly, but more often it manifests as a gradual ebbing of interest, effort, and commitment. He also posits that the degree of disengagement seems directly related to their growing disappointment with or disbelief in the process.^77,78 Part of this reaction throughout the course of GC-HARMS was due to the aforementioned time lag between sampling and reportage of results (#1). But the project’s inability to actually “fingerprint” the presence of oil products from the Macondo Well in the food web (#5) for use as additional evidence of impact seems to point toward some degree of miscommunication and consequent misunderstanding of the difficulties involved in that task and the nature of science.

These misunderstandings include the basic mechanics of scientific practice (core principles and methodology), scientific standards of credibility, the relationship of science to uncertainty and risk and, more specific to this project, the physical properties and lack of prior risk characterization of the oil-based hydrocarbons under investigation: petrogenic polycyclic hydrocarbons. The less than agile speed with which institutional science usually reacts to massive public health emergencies—in this case, a situation that carries both a discovery component for science (hazard identification: characterization and risk appraisal) and a public health risk messaging responsibility—was noted, sometimes very pointedly, by community hub coordinators and citizen scientists throughout various phases of the GCHARMS research cycle.

Nurturing and Maintaining Trust in a CBPR Process May Be Delicate and Fraught

The ebb and flow of commitment evinced by the fishing community at various periods during this time-extended project certainly forefronts the specific responsibilities unique to the practice of CBPR, particularly, (1) a strong commitment to democratic deliberation within a transparent environment, (2) maintenance of multidirectional channels of communication and information exchange among experts and the community stewards of local knowledge, and (3) a realistic grounding for goals and objectives. A clear understanding and prioritization of needs, expectations, limiting factors, and responsibilities for community partners and science teams, alike, must be a primary goal during project planning stages. These initial steps must also include identifying areas of community EHL that must be emphasized for fuller community understanding of the scope and limitations of project science, with a concomitant focus on developing a multidirectional working level of mutual cultural fluency among scientists and partner communities. As more than just an aspirational goal, all groups must understand the vision, social situation, limitations, and strengths of each other.

That said, the GC-HARMS experience really illustrates the inherent difficulty of working with scientific unknowns during an urgent and evolving public health crisis within a deeply politicized social-economic context. And it must be acknowledged that the scientific lens—though uniquely powerful when trained on the physical world—often yields results less than incontrovertible and more like a work-in-progress begging for extended study. The political economics of fisheries stewardship versus energy development, the dynamics of race and class, the ongoing trauma of coastal land-loss, the need for greater regional access to quality health care and social services, unmet housing and employment needs carried over from previous disasters, and so on will still remain central to the overarching context of GC-HARMS and similar studies probing the DWH crisis.

Working at the interface of all these factors, science can develop evidence that may be used for more effective advocacy, suggest fresh avenues for research, and make strong recommendations for programmatic action. But more advocacy, another study, and additional recommendations without the force of law or, at the very least, a presidential Executive Order, may ring hollow for communities facing what they perceive as an existential assault on the social fabric of their lived reality—their roots and common sky, so to speak. This lack of closure may well seem anticlimactic, demoralizing, and just another source of chronic frustration. Viewing these community dynamics again through Comacho’s participatory model: if the process does not yield anticipated products, participation may be refused outright, withdrawn in media res, scaled-back or offered, only reluctantly, in the future.⁷⁷

Toward Greater Deliberative Democracy: A Trans-Scientific Knowledge-Making Process

In the words of physicist, Alvin Weinberg, the Oak Ridge National Laboratory Administrator during the Manhattan Project who coined the term “Faustian bargain” to describe society’s relationship to “The Bomb” and nuclear energy:

Attempts to deal with social problems through the procedures of science hang on the answers to questions that can be asked of science and yet which cannot actually be answered by science. I propose the term trans-scientific for these questions. Scientists have no monopoly on wisdom where this kind of trans-science is involved; they shall have to accommodate the will of the public and its representatives.⁷⁹

While the DWH crisis was certainly a multi-faceted scientific problem—not merely social in nature, though certainly that as well—Dr. Weinberg’s comments still seem germane. What he seems to propose is a less hierarchical, more democratic, symbiotic relationship among the public, socio-political, economic and scientific spheres that values other forms of knowing, and entails listening, respectfully, to diverse perceptions, aspirations, and core stories without cynicism or judgments.^51,52 Where involved parties are both participant listeners and active problem-solvers, and involvement sparks a personal and group transformation that fosters flexibility, horizontal decision-making, and multidirectional channels of clear communication.⁸⁰ And where resources are more equitably shared and expertise honestly validated by local knowledge and community ground-truthing.^62,81–83

This type of trans-scientific hybrid forum seems necessary to address the global complexity and deliberative challenges of complex issues like environmental public health—situated at the interface of science, economics, law, social justice, architecture and planning, philosophy and religion. And it would appear that the open-ended structure of such a hybrid would benefit by incorporating values and principles of CBPR—for example, the idea that public health is an inherent public good, and the actors in these deliberations bear an overarching social responsibility to serve the purposes of that concrete good.³⁰ That frame-work certainly accommodates the serious application of citizen science, both as a strategy for application of independent inquiry and activating local knowledge, and as a means of enhancing general EHL. Ideally, this would increase community levels of informed participation in development, planning, and regulatory rule-making, and greater informed local involvement of communities in safeguarding their own environmental public health.⁷⁵

In Summary

The scope of GC-HARMS made efforts to reconcile and genuinely address the concerns, needs, and agendas of such a diverse range of people and organizations during the GC-HARMS project difficult, even formidable, but the outcomes were, generally, highly rewarding. Crafting and delivering a collaborative multiplatform risk message based on evolving research that satisfied regional needs for timeliness and accuracy required the greatest coordination of project elements. The geographical range and sometimes sparsely populated areas within the region presented communication technology challenges, and long travel distances made face-to-face forums a chore for all parties to coordinate. The overarching social-political-economic dynamic created background dissonance and sometimes strained the boundaries of trust and transparency among citizen scientists, nonprofit community hubs, and scientists from four universities collaborating on the project. In summary, the following points seem most salient.

The activities of the citizen science network in conjunction with community hub managers, and the LEAN-CODC training sessions for fishermen were associated with an increase in conversational EHL, at least, on a short-term basis. This increase encompassed correct use of terminology—(PAH), food web, the concept of risk, chain-of-custody, the importance of establishing PAH baselines for seafood species—and familiarity with aspects of the project sampling map (http://gcharms.leanweb.org/seafood-sampling-map/) and the safe seafood consumption guide (https://www.utmb.edu/scg/).

Many (though not all) network fishermen, and all of the community-hub coordinators understood how to find and use the web-based sampling map, and the hub-coordinators were able to explain the significance of data from each sample site. The online sampling map was designed, primarily, by Paul Orr (Lower Mississippi Riverkeeper) and Michael Orr (Communication Manager: LEAN) in direct consultation with project community hub coordinators and the CODC personnel.

The interaction of EJ advocates with citizens in partner communities and project scientists increased participant familiarity with principles of EJ. EJ principles enhanced the workings of the CODC on-site presentations and annual multihub meetings, and dissemination of the project risk message, particularly in reference to trust. The concept of the north Gulf coast as a regional EJ community became a working principle and served to unify these diverse communities. Hopefully, this concept will find further traction and expand its scope of use in the future.

Deliberative interactions among community hub coordinators, network fishermen, and scientists prompted significant streamlining of the boat-to-laboratory sample analysis workflow for more timely reportage of sampling levels. This close engagement was also instrumental in successive revisions of the risk message, incorporating results of toxicological research and refining the clarity and concrete relevance of how the concept of risk was framed for the public. Both the sampling site map hosted by the Louisiana Environmental Action Network and the University of Texas Medical Branch safe seafood consumption calculator were the results of long deliberative processes to formulate design parameters and curatorial roles for these tools. These processes were guided by CBPR values and practice principles: shared decision-making, multi-directional communication, respect, and transparency.⁸⁴ While far from perfect, the GC-HARMS citizen science network provides a working model of active collaboration among communities and scientists that adds to the documentary literature of this growing field.

As stated prior, the lack of sustainability for the citizen science network beyond the GC-HARMS project is a deeply disappointing outcome. Admittedly, it is impractical to expect a fragile entity like the fishermen’s citizen science network to persist and grow in the absence of any funding for programmatic activities. But this is especially discouraging as fishermen in each hub identified ongoing periodic monitoring of important commercial species for both scientific and branding purposes as their major priority for the future. It also problematizes any gains in general EHL made during the project: newly developed skills and interests rarely prosper unless they are used and ideally expanded.

Since direct encouragement of citizen science no longer seems to be part of the EPA’s general community engagement focus (though that may change in the future and varies in scope and range from region to region), some other sources of funding and technical support must be identified and developed. Perhaps universities or nonprofit sector groups like Public Lab will take on a larger role in the foundation,⁸⁵ proliferation, and maintenance of future citizen science networks. Perhaps the NIEHS will fill this need by expanding the scope of its Partnerships for Environmental Public Health program or its Research to Action extramural funding mechanism. Perhaps prior exposure to the GC-HARMS citizen science sampling network may make it easier to reconfigure a similar group in the Gulf should the need arise.

And although this has no roots in the project, the move to tighten regulations in exploration-production aspects of the oil industry—whether coincidental or more causally connected to intense scientific scrutiny and evidence-based advocacy from various sources—has been recently reversed.^16,18,86 This is part of the general relaxation of regulations, monitoring, and enforcement enacted by the current EPA administrator and a source of extreme disappointment to the EJ advocates who made such a strong contribution to GC-HARMS.

Finally, the practical validity of trans-scientific knowledge hybrids as democratic problem-solving structures was borne out in practice during GC-HARMS and the course of the various regional deliberative processes that accompanied the damage assessments to the ecosystem and local economies. This type of structure, which more or less mirrors many characteristics of CBPR, could bear promise in future similar situations where public health urgency (risk) and scientific unknowns (risk characterization) converge with community or regional needs to quickly develop safety protocols in the face of potential public health threats. The concept received a boost when the NIEHS instituted its DR2 program which offers more or less “shelf ready” protocols for rapid deployment of human health impact studies.²⁰ Given the antiregulatory currents running through EPA and possible cut-backs in funding for the Centers for Disease Control and Prevention’s basic public health mission, the DWH, or something similar, could become the region’s recurring, “once and future” crisis.

Figure 1.

Levels of Collaboration & Shared Responsibility in Community Health Research.

Figure 2.

Wed-Based Tools for Access to GC-HARMS Findings, Risk Messaging and Project Process Details.

Author Biographies

John Sullivan served as liaison with community hub coordinators for the GC-HARMS Community Outreach & Dissemination Core. He helped create and manage activities of the Fishermen’s Citizen Science Network and oversaw operations of the sampling process in the field. Sullivan has represented the project at NIEHS grantee meetings, organized annual CODC meetings within GC-HARMS Network and presented findings/outcomes at successive APHA meetings during the project. Sullivan previously served as Director of the Public Forum & Toxics Assistance Division of the Community Outreach & Engagement Core of the NIEHS P30 Center in Environmental Toxicology at University of Texas Medical Branch (Galveston, TX). He is a practitioner of Augusto Boal’s Theatre of the Oppressed within a CBPR context and previously served as a guest co-editor with Eduardo Siqueira (MD, ScD) for a New Solutions special feature on Popular Arts & Education in Community-Based Participatory Research (2009).

Sharon Croisant, MS, PhD, Community Engagement Core Director, is an associate professor in the University of Texas Medical Branch Department of Preventive Medicine and Community Health. An investigator in both the Center for Environmental Toxicology and the Institute for Translational Sciences, she serves as director of Community Engagement for both. She has a strong record of leading community engagement efforts in environmental health, having assumed the role of Community Engagement Core Director in 2009, after serving as Director of Children’s Asthma and Lead Outreach since 2001. A major focus of her career has centered on translational research, that is, building interfaces between and among environmental research, education, and community health, especially through a Community-Based Participatory Research approach. She has established long-standing, ongoing collaborative relationships with community stakeholders across the Gulf Coast with a vested interest in using research findings to direct community-based intervention and outreach activities. Croisant was Principal Investigator on Project 1 (Community Health Assessment) and directed the project’s Community Outreach & Dissemination Core during the course of GC-HARMS.

Marilyn Howarth is an occupational and environmental medicine physician who directs the Community Engagement Core of the Center of Excellence in Environmental Toxicology, an National Institute of Environmental Health Sciences-funded P30 Environmental Health Core Center at the University of Pennsylvania. Her work through the center includes community-engaged research and outreach aimed at improving environmental health and policy and environmental health literacy. Howarth was a crucial member of the Gulf Coast Health Alliance: Health Risks related to the Macondo Spill (GC-HARMS) risk communication team.

Wilma Subra, (Subra Company): from her base in New Iberia, LA, Wilma Subra provides customized, on-site citizen science sampling training using Environmental Protection Agency chain-of-custody approved sample collection protocols, data analysis and ultimately helps communities refine their environmental public health advocacy with clearly defined goals and scientifically credible evidence. Nationally acclaimed as a MacArthur Prize-winning environmental public health scientist, Subra has worked with communities on a wide range of environmental public health issues such as fracking emissions-produced water impacts on ground water, emissions into fence line communities from refining and chemical production facilities, hazardous waste storage and treatment, municipal water treatment facilities, and so on. She served as project Community Scientist during GC-HARMS providing sample preparation training and environmental health literacy instruction for fishermen in the Citizen Science Network and was a valuable member of the GC-HARMS risk communication team, working on-site from Coden, AL to Dulac, LA during the project.

Marylee Orr is the Founding/Executive Director of the Louisiana Environmental Action Network (LEAN) located in Baton Rouge, LA. LEAN is directly involved with environmental monitoring, community education and advocacy projects throughout Louisiana and the U.S. Deep South. LEAN was a partnering organization in the Gulf Coast Health Alliance: Health Risks Related to the Macondo Spill (GC-HARMS) Project. It served as a coordination hub for a Fishermen’s Citizen Science Network, aggregated seafood sampling data collected in the research project, and developed the project’s Seafood Sampling Map, an interactive tool that displayed results of the sampling process with interpretive commentary.

Cornelis Elferink obtained his PhD in Biochemistry from the University of Adelaide, Australia, and conducted a Postdoctoral Fellowship at Stanford University before initially joining the faculty at Wayne State University, and subsequently the Department of Pharmacology and Toxicology at the University of Texas Medical Branch where he is currently Professor and the Mary Gibbs Jones Distinguished Chair in Environmental Toxicology, and the Director of the Sealy Center for Environmental Health and Medicine. Elferink’s long-term basic science research objective is to understand the role of the aryl hydrocarbon receptor in liver homeostasis and liver regeneration following hepatic injury. He also headed the collaborative research team linking scientists from several academic institutions with Gulf of Mexico stakeholder communities impacted by the Deepwater Horizon disaster to examine the human health consequences of the oil spill using community-based participatory research strategies.