Areas of Opportunity

Risk and crisis communication involving zoonotic diseases have been substantially discussed in setting regulations for gain of function research. During a 2015 gain of function symposium, participants discussed assessment of risks and benefits. Fischhoff provided four considerations for risk assessment: defining “risk” and “benefit”; assessing risks and expected benefits; communicating risks and expected benefits; and organizing to reduce risks and increase expected benefits. ¹⁰ One consideration included “socially acceptable definitions” of risks and benefits. When discussing the limitations of current approaches to risk assessment, Fischhoff “stressed the importance of risk communication.” ¹¹ Schoch-Spana elaborated on the topic to focus on public engagement, including the local level of communities that host Gain of Function research labs. Schoch-Spana specifically discussed, “the public’s points of views, criticisms, and constructive advice,” as informing authorities; yet the modes of communication described included “surveys, polls, and focus groups during public comment periods.” ¹² Schoch-Spana differentiated between three modes of engagement: communication, consultation, and collaboration, which we explore below. Here, we define risk as actual and perceived potential for harm or danger. HaimesReference Haimes ¹³ notes that risk is difficult to define because it is a function of the event that initiates the risk, the system involved and the surrounding environment, and the time frame involved. Risk, a measure of the degree to which negative consequences are likely and severe, is determined by factors such as performance capabilities, vulnerability and resilience vectors, potential consequences, and states of the system involved.Reference Haimes ¹³

Similarly, at a 2016 gain of function symposium ⁷, some participants expressed concern that requiring scientists to participate in public deliberation exercises represented an additional burden and an unfunded mandate due to a public that might be hostile to science for unrelated reasons. ⁷ BeamishReference Beamish ¹⁴ found that bases for risk assessment in communities were driven less by competing facts and narratives and more by locally acknowledged “matters of concern.”Reference Latour ^{15 ,} Reference Beamish ¹⁴ Local civics and discourse “were linked to civically situated impressions of authority, its exercise, and due process; of ongoing political relations, causes, and rivalries; and of rights, social obligations, and moral commitments.”Reference Latour ¹⁶ Based on a form of bounded rationality, what was and was not deemed risky was very much a reflection of local conventions of thought and practice, known political relations and rivalries, and resonant civic virtues and value-commitments.

Other concerns raised by invited participants, such as David Drew of the Woodrow Wilson Center, at the 2016 symposium included that public engagement could be in the form of “upstream engagement” intended to diffuse public concerns without addressing them. Schoch-Spana ⁷ responded that effective public deliberation must be a dialogue that leads to common ground; it should not be purely persuasion. This is in line with the work of Sastry et al.Reference Sastry, Siegenthaler and Mukherjee ¹⁷ who used a culture-centered analytical framework to investigate the construct of “community” as it was employed in community engagement efforts to address vaccine hesitancy. Their analysis reviewed 400 documents from state public health departments and concluded there were various uses of community. The researchers detail the challenges and opportunities of various conceptualizations of community. Sastry et al.Reference Sastry, Siegenthaler and Mukherjee ¹⁷ noted the emphasis on the role of state and local governments in vaccination planning. Such localized tailoring, in their view, necessitated participation by those outside of the public health field.

Institutional legitimacy was an important issue in Beamish’s¹⁸ study of the establishment of biological research labs in three different communities. The biological laboratory in Galveston, TX, was accepted because the university was trusted by the public and therefore it was believed the lab would be in service of the public good. In Galveston, local elites and trustee institutions played a key role in community discourse. People in Galveston differentiated between risks posed by outsiders and those posed by the University of Texas Medical Branch. ¹⁸ In Galveston, risks regarding the lab were relativized compared to risks the island was accustomed to. ¹⁸ Residents of Galveston saw a moral duty and civic obligation to support the project for the collective good. ¹⁹

In places such as Davis, CA, and Roxbury, MA, concerns about control of the facility, previous accidents, and military involvement moved the communities from ambivalence to hostility. Concern was generalized beyond the specific lab in question to the larger biodefense policy. Residents of Roxbury argued against an unequal distribution of risk based on race and class. In Davis, opposition was rooted in a “pastoral ideal,” a desire for shared governance, and a distrust of “progress.” ²⁰

BeamishReference Beamish ¹⁴ quoted Habermas,Reference Habermas ²¹ writing that the state has a dual capacity to intervene in “external risks” to public security and ensure that democratic institutions, due process, and individual rights are acknowledged and maintained. An increasing number of U.S. citizens doubted the claims made by the government and affiliated institutions that they possess failsafe approaches to addressing matters of public security. Such distrust has been supported by incidents such as a leak from a biological research laboratory contaminating area groundwater with foot-in-mouth disease in the United Kingdom.Reference Anderson ²² North America has experienced its own laboratory-associated incidents. For instance, a worker at Winnipeg laboratory was infected with bacteria without it being publicly reported by the facilityReference Blackwell ²³ or the University of Texas at Galveston lab being cited for improper treatment of lab animals and improper practices.Reference Feibel ²⁴ Prior to the COVID-19 pandemic, some residents of Manhattan, Kansas, expressed serious concerns about the establishment of the National Bio- and Agro-Defense Facility in their community.Reference Eaves ²⁵ More recently, there was public outcry over a joint venture between the National Institutes of Health, Colorado State University, and EcoHealth Alliance to study bat viruses with samples imported from Asia. In addition to previous concerns raised by the creation of such labs, concerns about this lab were exacerbated by the belief that the COVID-19 pandemic was the result of a lab leak and that people affiliated with the U.S. government and EcoHealth Alliance were involved in the research that produced the leak.Reference Lardieri ²⁶

Lu et al.Reference Lu, Milinovich and Hu ²⁷ noted that during the 2002-2003 SARS outbreak “the lack of clear information and communication, created fear and drove speculation,” while the media amplified misinformation. Often the government has failed to strike the appropriate balance between assuring the population that a situation is in hand and providing a false sense of security.Reference Böl ²⁸ Canela et al.Reference Canela, Claesson and Pollack ²⁹ concluded that an “evidence-based and holistic approach to countering mis- and disinformation requires consultation involving a wide range of actors.”

Public health authorities have acknowledged the problems of marginalized groups, lack of expert trust, information overload, and unequal access.Reference Sastry, Siegenthaler and Mukherjee ¹⁷ Acknowledgement should be given to historical incidents, like the Tuskegee Syphilis Study, which led to distrust among populations like the African-American community regarding public health and medical research. This suspicion contributed to conspiracy theories about AIDS being designed as a bioweapon against the African American community, as well as distrust toward genetic sequencing and immunization programs.Reference Clark ³⁰ While this history contributed to the spread and acceptance of misinformation and disinformation during the COVID-19 pandemicReference Kemei, Alaazi and Tulli ³¹, it is our contention that proactively applying a complexity-informed CCA will help to build trust that will encourage populations to be less inclined to accept such mis/disinformation in the future.

Beamish ³² stated that proponents of labs should focus more on local civics and discourse and less on technical assessments of risk (embedding the assessment in culturally meaningful contexts). Ethics require a full acknowledgement of the risks and benefits of a biological research lab; however, that discussion should be tailored to the particular values and priorities of the community. The research is primarily targeted toward laboratories like those involved in the Biosafety Level 4 Zoonotic Laboratory Network, which involves animal and public health organizations ³³ working on increasing understanding of and treatments for zoonotic pathogens like COVID-19, Ebola, and Anthrax. ³⁴

CCA Research

As discussed in Dutta,Reference Dutta ² the CCA requires tailoring participation and engagement to each individual community to gauge perceptions, attitudes, and knowledge before providing information or beginning to implement a new program. The practices, norms, and values of the community must be the basis for dialogue. Understanding existing power structures, as well as who has a voice in the community and who needs to be provided with one, is also an important consideration^.Reference Dutta ² Such an approach could be used to encourage diverse participants to contribute to on-going public health surveillance of emerging infections, such as those efforts currently being used to monitor the H5N1 situation in the U.S., to lend greater credence to morbidity and mortality information. ³⁵ A running theme of the culture-centered approach has been determining the boundaries of community membership,Reference Dutta ^{2 ,} Reference Sastry, Siegenthaler and Mukherjee ¹⁷ acknowledging that boundaries extend beyond geographic areas and include various social circlesReference Pearce ³⁶ with overlap between and with other community memberships. The CCA was originally intended to involve marginalized people in the co-construction of knowledge and meaning.Reference Basu and Dutta ³⁷ Involving marginalized people does not mean excluding the broader population; the goal is to include all voices of a community to best serve and meet the needs of the community as a whole. Taking an inclusive approach with CCA can also help to identify social vulnerabilities that represent a universal threat.

Sastry et al.Reference Sastry, Siegenthaler and Mukherjee ¹⁷ used a culture-centered analytical framework to investigate the construct of “community” as it was employed in community engagement efforts to address vaccine hesitancy. The authors asked in their research which definitions of community were absent from the discussion. They investigated the underlying assumptions of public health, particularly the beneficence of community, which some regard as the commodification of community. They concluded that community is used to rationalize the need for people to act for the good of the whole, such as the choice to receive the COVID-19 vaccination(s). Community is used to lower tension in the face of distrust of institutions, government, and experts. Reliance on the ideal of community can lower people’s defensiveness toward the imposition of a top-down agenda. Community has been framed in a manner to limit or exclude meaningful participation, thus setting up a circumstance in which experts will tell people what must be done to be a responsible citizen. Given the “discursive struggle to define community” ³⁸ described, we explicitly define community as the group of individuals sharing material space as well as connection to and with the geographical area surrounding their homes or places of employment, in which there is a desire for and an investment in the well-being of themselves, their loved ones, and those with which they engage. BuckleReference Buckle ³⁹ provided a number of relevant definitions for community, including “people living within a defined administrative unit,” “people within a defined cultural unit,” or “population of a more or less identifiable spatial area.” All these definitions are relevant; as local governments must engage in regulation and observation of research facilities, the culture of an area will affect how such research and its potential and actual consequences are perceived, and the geographical context of an area will affect the manner and extent to which a high-risk pathogen could spread. This analysis of practice provides a necessary reminder for proactive interactions during community engagement.

The National Biodefense StrategyReference Strategy ⁴⁰ discussed goals relevant to the CCA, such as “Enable a common U.S. federal operating picture of spillover events,” and “Work with domestic public health, animal and plant health, and environmental health stakeholders to increase agricultural biosafety, biosecurity, and bio-surveillance for activities associated with pathogen spillover, and reduce activities found to be drivers of pathogen spillover.”Reference Strategy ⁴⁰ Combined with the goal to “Establish or identify domestic or international forums, mechanisms, or entities to focus on supporting efforts to develop and provide guidance for implementable, effective, and rigorous life sciences research biosafety and biosecurity norms and oversight and monitoring programs in all sectors worldwide,”Reference Strategy ⁴¹ these goals indicate that biological labs are expected not only to take greater responsibility for preventing accidents, but also collaborate with other actors to produce a full picture of zoonotic threats.

Complexity-Informed CCA

While the CCA has been used to critically evaluate messaging—such as the use of the term “community” in a coercive mannerReference Sastry, Siegenthaler and Mukherjee ¹⁷—we believe that it can also be used to improve risk and crisis communication between the public and research labs. Using a complexity-informed CCA will help to avoid the problem of using a “cookie-cutter” technique and lead to plans that best suit the unique needs of the community. Dillard et al.Reference Dillard, Anaele and Kumar ⁴² note the value of training public health and medical professionals in cultural competence practices to understand cultural nuances of communicating with patients and research subjects but note that such practices often still place patients/participants in a subordinate position. The goal of the CCA is to give patients and participants a true voice and role in the development and conduct of the treatment/research process.

Although one may look at the central tenets of a CCA and create plans for collaboration, we suggest considering the role of communication in the process as more than simple communication. More specifically, taking a Communication Complex perspective is necessary for enhanced understanding and efficacy of interactions. Parrish-Sprowl’s^8,9 Communication Complex (CC) is based on dual principles: everything is systemic, and communication is bioactive. The bioactive nature of communication is best explained by Parrish-Sprowl, when he states, “Human communication literally plays a role in our biology and of the biology of the people we are talking to.”Reference Parrish-Sprowl ⁴³ Parrish-Sprowl goes on to discuss examples of the bioactivity by referencing the impact of how we talk to each other on creating and shaping brain structure, the impact of how we communicate on the epigenetic level, including the impact of storytelling on repairing DNA, and the impact of expressing emotions on health, including empathic communication, and many other examples.Reference Parrish-Sprowl ⁴³ How we communicate—the nonverbal components of communication, such as paralinguistics (tone, rate, pitch, etc.), gestures, facial expressions, kinesics, environment, etc.—plays a significant role in constructing connection, response, and creation in others that go below the skin to the biological level and manifest in our physiological responses (e.g., heart rate, perspiration, lacrimation, cutis anserina, etc.). Understanding “every interaction is an intervention”Reference Parrish-Sprowl, Parrish-Sprowl and Alajlouni ⁴⁴ plays a role in the application of a CCA plan. Through an engaging and interactive CC-inspired process, risk and crisis communication plans can be developed in a manner that helps to dispel misinformation.

When understanding the complex nature of communication, learning about culture, structure, and agency moves beyond “finding” or “discovering” local knowledge to acknowledging that every interaction between scientists and community members changes the local communication ecosystem, which can be enhanced to promote on-going trust, partnership, and improved health. Although the bioactive nature of communication does not have to be understood by those who participate in communication, those involved in planning should understand the impact of communication—whether ineffective and coercive or effective and collaborative—on every person involved with or living in a community with a biosafety lab. The shift to a complexity-informed approach to CCA can address the areas of opportunity by building relationships through a connection that is deeper than the surface and includes connecting with others through trust and understanding, which are established by focusing on how we communicate. This approach builds from the three tenets of CCA—culture, structure, and agency—to include the explicit focus on the how of communication—understanding and applying nonverbal communication—to form connections with community members in a proactive approach to collaboration and partnership.

At the 2015 symposium, Schoch-Spana, ¹⁰ noted the importance of defining the boundaries of the public being addressed. One could define the public generally as all those potentially affected by research, with boundaries being possibly local, national, and global. While many would point to taxpayers and racial/ethnic minorities as interested publics, a complexity-informed approach to CCA reminds us to include and work with groups typically left out of membership classifications, such as farm laborers and other individuals who regularly come into close contact with animals and would be expected to come into contact with an emerging zoonosis at an early stage (see recent emergence of H5N1). The collaborative effort acknowledges that inclusion does not solely impact farm laborers, but the laboratory personnel are mutually impacted by the interactions; moving one step further, others are also impacted through the systemic effects of the interactions on future interactions.

Once publics are defined, Schoch-Spana ¹⁰ says that approaches to engagement must be considered and tailored to the local community. Engagement is defined as processes by which citizens influence the policies and programs that affect them. Modes of engagement described by Schoch-Spana include communication, consultation, and collaboration. Marginalized groups tend to be skeptical of typical engagement approaches due to suspicion of institutions established over time from traditional messaging and information-based approaches that took a simple approach to communication (i.e., message-focused). In order to reach marginalized groups, non-traditional approaches are required to facilitate communication and more in-depth engagement. A complexity-informed CCA is a non-traditional approach that aims to change the communication ecosystem and engage all voices. Consultation, in which institutions solicit information from the public, will likely require more time and resources; yet the investment can lead to a better understanding of local concerns to allow for the typically unsolicited worries to now be addressed. This, of course, should not occur before team members participate in complexity-informed CCA training. Failure to include applied training that allows team members to experience the bioactive nature of communication and understand the significance of trust and relationship-building would jeopardize the process and perhaps create the opposite impact that could diminish trust and lead to reactive conflict.

Continuing, Schoch-SpanaReference Schoch-Spana, Durmaz, Sevinc and Yayla ⁴⁵ writes that collaboration should yield “collective learning” based on “honest and respectful interaction.” ¹² Successful consultation efforts should yield collaboration, which requires a co-constructed dialogue between the authorities and constituents. Such a process is central for a complexity-informed CCA because of the focus on interaction and systemic effects, which could contribute to overcoming the distrust created over years of exclusion of marginalized groups. However, it requires personnel meeting people where they are and taking into account people’s concerns, biases, and experiences. Such processes are needed for “technically and ethically complex” issues, ¹⁰ which would certainly apply to zoonotic disease research.

According to Schoch-Spana,Reference Latour ¹⁵ engagement is justified on three bases: improving product quality, enhancing legitimacy, and building capacity—all of which are possible with a complexity-informed CCA. Enhancing legitimacy is particularly important, as marginalized populations have experienced coercive legitimacy from institutions more than others. If authorities engage constituents that are typically not engaged, it can help improve product quality by bringing local knowledge to policy analysis. Regarding capacity building, authorities learn more about the full range of public concerns so that they can address necessary biosafety and biosecurity concerns, in result, promoting wider public support, while marginalized groups can gain greater understanding of the scientific and political processes at work and decrease distrust when concerns are clearly heard and addressed.

Application

In centering the ongoing conversation in CCA that is addressing suggestions of previous research (e.g.,Reference Beamish ¹⁴), a risk assessment should look different from a more traditional approach to risk. Part of the process we are suggesting includes changing the current structural process (i.e., focused on the messages’ design sent to the communities) of risk and crisis communication to take a complexity-informed CCA approach, which has a goal of sharing power—in a way that is not seen as merely performative, but genuine—to include all community members (another potential shift in a structure that may only presently include political figures and affluent and involved community members) in the process. If done correctly, this should lead to tangible adjustments in messaging that are based in semantic assumptions (another shift to include an emic perspective in word choice) but are not limited only to the tangible outcome of documentation/campaigning—which we argue are relevant but not the sole focus on the foundational work to build relationships and trust in order to address risk prior to crisis. As suggested in Dillard et al.,Reference Dillard, Anaele and Kumar ⁴² the goal in regard to research involving highly pathogenic zoonotic disease research would be to provide opportunities for community members to inform the values and goals underlying the level of risk involved in the research. Here we provide four phases to risk assessment focused on engagement through a complexity-informed culture-centered approach.

When considering the “community,” lab personnel should work with local members of the area surrounding each lab or in the potential lab location (e.g.,Reference Dutta ^{2 , 7 ,} Reference Sastry, Siegenthaler and Mukherjee ¹⁷). The first phase is access.Reference Salter and Dutta ⁴⁶ A team of personnel may not be able to interact directly with community members due to a variety of factors (e.g., distrust, scheduling, the need for social distancing). In such a circumstance, communication consultants may be a feasible mediating group to assist in the process. The team members (roughly two to five members, depending on the number of lab personnel and population of the surrounding geographical location) should determine various groups (e.g., advisory, volunteer, religious, trade, etc.) in the community; scholars have utilized non-profit organizations (e.g.,Reference Dutta, Collins and Sastry ⁴⁷) and social media sites (e.g.,Reference Salter and Dutta ⁴⁶) to learn about various groups and to invite conversation—with a key emphasis on invitational opportunities rather than coerced via existing structures. An important part of this phase is learning; learning of groups and their leaders prior to accessing community members. Then, providing an invitation to a conversation should include a public space where all members (team and community) feel safe.Reference Porges ^{48 ,} Reference Rascon ^{6 ,} Reference Parrish-Sprowl, Ziberi and Editorial ³

The second phase is engagement, which can take on many forms (e.g., interviews, participation, attendance, observations, etc.). The goal for engagement should focus on connecting with community members via genuine active listening—as Elers et al. describe the role of a CCA researcher, members should mirror that role through “deep listening with humility and reflexivity.”Reference Elers, Elers and Dutta ⁴⁹ One engagement may be in the context of a town hall meeting. A second interaction could take place while participating in a volunteer group’s monthly meeting. Still a third meeting may be a conversation at a local coffee shop. As Parrish-Sprowl et al. state, “every interaction is an intervention.”Reference Parrish-Sprowl, Parrish-Sprowl and Alajlouni ⁴⁴ One interaction can lead to change; however, multiple interactions construct change. Engaging in conversation—instead of simply speaking for the various groups and speaking with them as a CCA approach emphasizesReference Dutta ²—should include listening to concerns, discovering likes and interests, and learning about plans, goals, etc. while asking questions, clarifying, and providing nonverbal feedback (e.g., nods, eye contact, open posture, etc.). Trust is created through communication (inter)actions not through rationality.Reference Rascon ⁶ Another valuable part of this process is acknowledging that leaders and influential members may not always be those in positions or even with titles, so engagement with active members may lead to a deeper understanding of the community than interacting with a city-appointee.

Reflection is the third phase. Based on the engagement, team members should reflect on what they learned about and from the community members—as well as themselves—in an intentional space that is safe, positive, and calm.Reference Parrish-Sprowl, Parrish-Sprowl and Alajlouni ^{44 ,} Reference Rascon ⁶ Reflection for the sake of learning can lead to identifying key “themes” or concerns and desires that are not readily available for non-community members. Reflection also overtly includes the voice(s) of the community in personnel conversations when most often the members are instead spoken for or about—a necessary goal of a CCA to empower marginalized groups. The process of reflection in a safe space can [will] alter the perceptions of the team members as they explore being collaborators with community members to help all feel safe—an ongoing quest of our nervous system.Reference Porges ^{48 ,} Reference Rascon ⁶ In sharing about the engagement with community members, there are some guiding questions for sense-making, such as: What are their priorities? How do they describe their home (e.g., community, location, area)? What makes them feel safe? Inherent in reflection is an interpretive process of identifying risks and concerns that should influence the labs’ ongoing involvement in and with the community (phase four). The understanding that is gained through the collaborative process should influence the lab personnel’s interactions (e.g., interventions) with community members to improve future outcomes.Reference Rascon ⁶

Ongoing involvement is the fourth phase to assure the feeling of safety for the community.Reference Porges ^{48 ,} Reference Rascon ⁶ After deliberation about themes and lessons-learned with the community, the conversation between—what Schoch-Spana describes as two-way communication ¹⁰—personnel and the community should continue. The personnel should share the overall takeaways with key stakeholders, including local celebrities, doctors, veterinarians, and spiritual leaders. This engagement with the community may alter or improve some reflections and continue to support agency for members. Personnel should explain the implications of their engagement and reflections on structural changes (i.e., policy and practice), so the community members are validated for their collaboration.

At any phase, if new groups are identified, team members should return to phase one to gain access to new groups. The process should not be viewed as linear, but instead as organic and dynamic, as people come into the community—or leave—phase one becomes relevant again. Phase two and phase three should consistently influence each other, and phase four allows for validation of and commitment to the process of building and establishing trust to reconstruct the perceptions of risk and address relevant dangers. An important element of this will be identifying and negotiating competing types of risk and the level of concern they present to the community. The larger debate over whether the spread of pathogens with an origin in nature as opposed to breach in laboratory biosafety is likely to play out at the local level as well. The process above should involve stakeholders relevant to either or both scenarios, facilitating meaningful engagement for the purposes of building trust, and reflecting on each side’s risk perceptions as well as lived experience of both groups. The desired result should be consensus on risk levels, as well as a plan for mitigating risks which, going along with the fourth phase above, all stakeholders will be involved in implementing and adjusting as needed.