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Epidemiologists’ ambivalence towards the epigenetics of social adversity

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• Published: 13 September 2021
• Volume 18 , pages 25–50, ( 2023 )

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• François Romijn 1 &
• Séverine Louvel 2  

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A Correction to this article was published on 07 October 2021

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This article studies how social epidemiologists get involved in research carried out on rodent models to explore the biological pathways underpinning exposure to social adversity in early life. We analyze their interdisciplinary exchanges with biologists in a social epigenetics project—i.e., in the experimental study of molecular alterations following social exposures. We argue that social epidemiologists are ambivalent regarding the use of non-human animal models on two levels: first, in terms of whether such models provide scientific evidence useful to social epidemiology, and second, regarding whether such models help promote their conception of public health. While they maintain expectations towards rodent experiments by elevating their functional value over their representational potential, they fear that their research will contribute to a public health approach that focuses on individual responsibility rather than the social causes of health inequalities. This interdisciplinary project demonstrates the difficulties encountered when research in social epigenetics engages with the complexities of laboratory experiments and social environments, as well as the conflicting sociopolitical projects stemming from such research.

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Introduction

Since the 2000s, studies of the biological mechanisms through which material, physical and social environments ‘get under the skin’—that is, become biologically embedded—have grown in number. Such research is often based on laboratory experiments conducted on non-human animals such as rodents and monkeys, which are used as models for human research. This is particularly the case in environmental epigenetics, which is the study of epigenetic changes Footnote 1 caused by material, physical and/or social environments. Social science researchers have described several features of laboratory experiments common to environmental epigenetics and other areas of research focused on interactions between genes, organisms and environments (Leonelli et al. 2014 ; Nelson 2018 ): biologists’ difficulties stabilizing experimental systems (Niewöhner 2011 ; Chiapperino 2019 ; Lappé 2018 ); the lack of ecological validity of human social environments staged in laboratory settings (Beck and Niewöhner 2006 ; Chung et al. 2016 ); and the intertwinement of facts and values in experiments (Kenney and Müller 2017 ; Chiapperino 2019 ; Lappé 2018 ). While the literature provides a thorough examination of how biologists consider non-human organisms to function as technologies of translation between animal biology and human health research (Shostak 2007 ), little is known about their use in the latter area, in particular by epidemiologists—scientists studying the distribution and determinants of health-related states and events in populations. Footnote 2 Despite the well-acknowledged reductionist properties of lab research in environmental epigenetics (Chiapperino 2019 ), some epidemiologists work with research based on non-human organisms. This article questions why and how epidemiologists engage with such research. We investigate these issues in an area of environmental epigenetics where the “conceptual gulf” between laboratory experiments and human social environments has been particularly emphasized (Chung et al. 2016 , p. 174), namely, in social epigenetics: the study of molecular associations between social environments (most commonly defined as psychosocial stress, socioeconomic status, living environments, and experiences of traumatic events) and health outcomes. In particular, we study what motivated epidemiologists to engage in a social epigenetics project that incorporated both human cohorts and rodent experiments to study the biological effects of adverse social experiences during early life. Conducted in a number of French universities from 2012 to 2016, the EARLY project—a designation chosen for this article—was a multi-team project integrating neurobiology, nutritional biology, social epidemiology, and research in law and ethics. The social epidemiologists involved were well aware of the difficulties of transposing findings from non-human animal models to epidemiology. Thus, we investigate the “epistemic scaffolds” (Nelson 2018 ) these researchers employed to facilitate circulation between experiments on rodents conducted by biologists and their own work on human cohorts. In addition, as study of the biological embedding of social inequalities is very limited in France and arouses a certain skepticism, we explore the credibility issues they encounter in French academia. Eventually this study led us to question whether interdisciplinary collaboration during the course of the project had opened up new ways of engaging with the complexity of laboratory experiments and environments, and as well, to ask which public health perspectives were associated with such collaboration.

In Sect.  1 , we will introduce the social science perspective of how biologists work with non-human organisms in environmental and social epigenetics. We will describe how, in the laboratory setting, the “molecularization of environments” (i.e., the narrowing of culturally and socially embedded practices to individual exposures and behaviors; Niewöhner 2011 ) accompanies the cultivation of “layers of complexity” (Chiapperino 2019 ). In Sect.  2 , we will introduce our empirical investigation of the EARLY project and the co-construction of a mouse model used to study the biological embedding of early-life adversity. We will argue that the social epidemiologists involved in the EARLY project adopted an ambivalent stance on two levels: first, regarding how rodent experiments provide scientific evidence useful to social epidemiology, and second, regarding whether the interdisciplinary project promotes a conception of public health that addresses the social causes of health inequalities.

Non-human animal models in social epigenetics: biologists engaging with “layers of complexity”

Chiapperino ( 2019 ).

A sub-domain of environmental epigenetics, Footnote 4 social epigenetics aims to uncover the molecular mechanisms that link immersion in a social environment to subsequent health states in an individual or their offspring. Environmental and social epigenetics are very small areas within epigenetics research (Larrègue et al. 2020 ), yet they receive steady social science and media attention. Footnote 5 These areas of research are permeated by the same controversies as epigenetics at large (Tolwinski 2013 ; Lloyd and Reikhel 2018; Chiapperino and Panese 2018 ; Müller and Samaras 2018 ), such as links to genetics, the reversibility of epigenetic marks, and the timeframe of epigenetic changes. These fields of study also display considerable internal heterogeneity in terms of their definitions of environments, disciplinary backgrounds and experimental apparatus. For instance, social epigenetics gathers research on monkeys and rodents subjected to experimental situations of social defeat and early-life adversity, and studies on human populations that have experienced childhood trauma, poor early-life nutrition, or adversity in early life or over the life-course (Louvel 2020 ). In this article, we are particularly interested in research that employs non-human animal models Footnote 6 to study the biological effects of nutritional and psychosocial adversity in early life, and their behavioral and cognitive consequences. Our ambition is to address “how specific propositions of epigenetics are taken up, negotiated, and interpreted in specific research contexts” (Müller and Samaras 2018 ) and to offer a new perspective on a research area that appears to be representative of how research in environmental and social epigenetics is conducted and communicated. Footnote 7 Like other authors (Lappé 2018 ; Chiapperino 2019 ), we also wish to highlight what this area reveals, more broadly, about ways of studying gene-environment interactions (Nelson 2018 ).

Social scientists have documented why biologists working in environmental and social epigenetic laboratories choose certain animal models and experimental protocols, and have highlighted similarities in how the uncertainties of laboratory work are managed. In his investigation of a lab studying the transgenerational inheritance of “early-life stress” in rodents, Chiapperino ( 2019 ) observed that biologists “cultivate distinct layers of complexity” to produce knowledge that has both scientific validity and relevance for human health. The first layers of complexity relate to the modeling of stress and its biological effects. The experimental set-up (i.e., the standard stress protocols to which animals are subjected, and the targeted exploration of epigenetic modifications) leads to an “obliteration of the embodied complexities of stress” that biologists deem necessary to produce a “molecular explanation of the effects of stress” applicable to several organs, organisms and species (Chiapperino 2019 ). Anthropologist Niewöhner ( 2011 ), the first to conduct an ethnographic investigation in a social epigenetic laboratory, also identified the “molecularization of biography and milieu” at work in experiments on animal models. He describes researchers as “pragmatic reductionists” who use standardized animal behavioral models of early-life adversity to “reduce the messiness of environmental context in a way suitable for lab work” (op. cit., p. 289). Biologists acknowledge that their experimental models have limited representational value: “the researchers were acutely aware that human lives are much more complex than those of laboratory mice” (Lappé 2018 ) and even an “intrinsic normativity” (Chiapperino and Panese 2018 )—they convey representations of the social world and may help reinforce them (Mansfield 2012 ; Richardson 2015 ; Kenney and Müller 2017 ; Sharp et al. 2018 ). They also acknowledge that the molecularization of research (finding the molecular pathways from environmental exposure to health outcomes) goes along with the molecularization of the human environment (Landecker 2011 ; Lock 2015 ; Niewöhner 2020 ). Yet biologists do not choose experimentation on animals for its simplicity. As Nelson stresses about researchers in animal behavioral genetics: “Their decision to work with animal models […] was not a rejection of complexity; it was a different way of engaging with it” (Nelson 2018 , p. 200). Likewise, biologists in environmental and social epigenetics laboratories pay constant attention to the complexity of their experiments and to the instability of experimental situations (Lappé 2018 ). While laboratory protocols are highly standardized, their implementation is subject to multiple variations, due in particular to interactions between the experimenters and the animals, which can modify the animals’ environmental stimuli acting on the epigenetic machinery. Experimentation with animals requires a significant amount of “extra-factual work” (Nelson 2018 ; Chiapperino 2019 ) and “care of the data” (Lappé 2018 , citing Fortun and Fortun 2005 ) which tends to remain invisible outside of lab contexts.

To summarize, biologists in environmental epigenetics demonstrate epistemic modesty (Pickersgill 2016 ): far from expecting their research to be directly useful in humans (for example, in finding new treatments), they carry out their experiments “in an effort to document mechanisms that may also be at play in humans” (Lappé 2018 ). In addition, they design experimental protocols so as to render the lab experiments tractable and to establish valid and credible results even if this “comes […] at the price of excluding a complex uptake of the embodiment of such experiences” (Chiapperino 2019 ). Finally, biologists are very aware that biological modifications are reactive to subtle changes in laboratory environments, but they are rarely able to modify their experimental systems accordingly (Niewöhner and Lock 2018 ; Niewöhner 2020 ). Do researchers working on human populations approach the scientific value of animal models the same way? How do they conceive of them as translation technologies between animals and humans—articulating data, technologies and practices across disciplines (Shostak 2007 )? Lastly, how do they define the relevance of animal models for human health? These issues have not been thoroughly examined to date, be it in environmental and social epigenetics Footnote 8 or more broadly, in the study of gene-environment interactions. Footnote 9 This article will fill in this empirical gap with a focus on social epidemiologists’ approach to using rodent models in social epigenetics. Drawing on the investigation of an interdisciplinary project studying the long-term effects of so-called cumulative stress during early-life, we analyze the “epistemic scaffolds” that social epidemiologists build to traverse from research on animals to research on humans (Nelson 2018 ), identifying these researchers’ “assumptions of complexity” (op. cit.) about experimental situations and human environments, observing how they translate these assumptions into experimental settings and how they link biological knowledge gained from these experiments with “socio-political thinking about the role of epigenetics in our societies” (Chiapperino 2019 ), particularly in respect to certain new perspectives on public health.

An interdisciplinary project to assess the cumulative effect of adverse experiences in humans and mice

Setting the stage: social epidemiologists meeting biologists in the french context.

When first contacting the team of French social epidemiologists, our goal was to investigate whether social epigenetics brought them new insights into the study of social health inequalities. We sought to analyze how they defined and operationalized the social in social epigenetics projects, and to explore whether they saw epigenetics as a venue for new interdisciplinary collaborations between the natural and social sciences. The team was eager to contribute to sociological knowledge and wished to share their concerns about possible sociopolitical translations of social epigenetics. Their work was of particular interest to us because it claimed to be part of a social epidemiology approach (i.e., study of the biological embodiment of health) that aims to associate the biological and social sciences. The notion of biological embodiment designates “how social influences become literally embodied into physio-anatomic characteristics that influence health and become expressed in societal disparities in health” (Krieger and Davey Smith 2004 , p. 92). Like social epidemiology as a whole, this approach is highly critical of the epidemiology of individual risk factors and emphasizes instead the structural determinants of health and health disparities. Footnote 10 Its specificity within social epidemiology is to examine the biological pathways that link social environments to health outcomes. The team of epidemiologists we met with were interested in epigenetic mechanisms as a preferred but not exclusive modality of the biological embodiment of social environments. They had published review and popular science articles in which they cited a wide range of well-known research in environmental and social epigenetics, to argue for the very likely association between the social environment, epigenetic modifications, and health states. Footnote 11 At that time, their own research focus was on early-life social environments and endorsed the Developmental Origins of Health and Disease, or DOHaD, perspective in epidemiology. Footnote 12 According to these epidemiologists, epigenetic mechanisms triggered by experiences during the early years of life may underlie the formation of health inequalities that later in life become difficult to reduce. During our first exchanges at the end of 2018, they reported that an essential part of their work in recent years had been the development and realization of a large interdisciplinary project. They described this project, which started in 2013 and ended in 2017, as “unique” and “unprecedented”. On their initiative, the EARLY research project Footnote 13 brought together teams in social epidemiology, developmental biology, neurobiology and nutritional biology, as well as a researcher in law and bioethics, and a sociologist, to examine the relationship between exposure to an adverse environment in early life and the emergence of pathologies in adulthood (such as cancers and metabolic diseases). EARLY had been an attempt, rare in the French context, to combine animal experiments and epidemiological research, and to build bridges between biology, epidemiology and the social sciences. Intrigued by this presumably unusual project, we conducted an in-depth study of its implementation and development, based on extensive material: semi-directive interviews with participants from all teams, attendance of scientific meetings and workshops, Footnote 14 and extended reading of the projects’ publications. This rich empirical data allowed us to uncover expectations and doubts about social epigenetics that would remain elusive if we were to rely solely on what these researchers write in their papers. In the next section, we will present the EARLY project and explain why it stands out as unique in the French context.

The EARLY research project

A team of social epidemiologists initiated the EARLY project to explore the biological mechanisms underlying social inequalities in health, with the aim of strengthening social epidemiology against the epidemiology of individual risk (Galéa and Link 2013 ). This is a major undertaking in France (Goldberg et al. 2002 ): most French epidemiology researchers are clinical epidemiologists trained in medical schools, and there are few public health schools, while most social epidemiology training is located in countries such as England, Canada, or the United States. The two senior epidemiologists of the EARLY project (Ada and Alexis), received part of their research training abroad, in university centers where clinical epidemiology does not dominate public health research and where research in social epidemiology is carried out in close dialogue between social science and public health researchers. In France, they have genuine difficulties making their colleagues, who come from the “very clinical, very biomedical” French tradition in epidemiology, understand that “social inequalities in health are not only a question of behavior […] and individual responsibility” (Ada, senior researcher in epidemiology, project leader). These difficulties culminated in the social epidemiologists being described, rather unflatteringly, as “sociologists”: “In the view of many of my colleagues, [if] we are interested in social factors, we are sociologists” (Ada). The team wishes to gain credibility by demonstrating that social environments leave biological marks: “If you show an epidemiologist who has always used a biomedical model that there are epigenetic changes in relation to social exposures, it is serious, it’s solid. It’s real proof” (Ada). In addition to initiating the EARLY project, there is a desire to increase competence in biological research, for example by obtaining authorization to use biological databases or by recruiting researchers trained in molecular biology and epidemiology. This quest for credibility bore fruit in a previous project, where the team’s researchers co-authored an article in the prestigious journal Nature on how social factors shape health through underlying biological mechanisms.

EARLY is a rather unusual project, not only in France, in that it combines analysis of data from epidemiological cohorts Footnote 15 with laboratory experiments conducted on rodents. Due in particular to the difficulties of adjusting temporalities between research protocols and the high cost of laboratory experiments, EARLY’s social epidemiologists tend to rely on published studies on animal models that suggest a link between social environments, epigenetic modifications and health states. Footnote 16 The epidemiologists of the EARLY project seized the opportunity of a national call for projects on the social determinants of health that would fund large interdisciplinary projects. They proposed setting up the EARLY project to biologists they knew informally, and also invited a researcher in law and bioethics and a sociologist to focus on the “ethical and societal challenges” posed by the possible biological incorporation of social inequalities. Thus, the social epidemiologists describe the EARLY project as having a “momentum of openness” (Callard and Fitzgerald 2015 , p. 22) towards interdisciplinary collaborations that came to an end with the closure of the call for tenders, and the failures of subsequent attempts to fund the continuation of the EARLY project: “we were told [N.B. by the funding agency] that we should submit two projects, one purely biological and one epidemiological” (Ada, project leader).

‘Zero adversity’, ‘one adversity’, ‘two adversities’ and ‘ + adversities’: exposure to social adversity in the EARLY project

EARLY had three main components: the definition in humans of early psychosocial exposures likely to have an impact on long-term health status; the study in rodents of the biological effects, and particularly the epigenetic effects, of early-life stress; and finally, using results from the first two components, the study in epidemiological cohorts of the links between early social environment, biological functioning and adult health status. The researchers spent several months discussing how to operationalize exposure to an adverse environment during early life in both humans and mice. The epidemiologists were interested in exposure to psychosocial adversity during childhood and in “chronic stressful conditions that harm child development” (Alexis, senior investigator in epidemiology). The literature on childhood adversity lists a large number of adverse events of varying intensity and duration: the team favored those related to the child’s family environment because of “the chronic and stressful aspect of having complicated relationships at home” (op. cit.). The focus on the accumulation of stressors is part of the life course epidemiology approach, which “contains the idea that there is an accumulation of risks, a kind of mechanism over the course of life, which can be positive or negative, or neutral. That is, you can accumulate risk, and you see a snowball effect in social terms that is very clearly demonstrated” (op. cit.). Also, while the epidemiologists were aware that other stressors were in play such as stress related to the school environment or neighborhood, they chose not to mobilize these variables because they were not of the same quality in their database. Finally, the EARLY’s social epidemiologists wished to select events and situations that previous epidemiological research, including their own work, had associated with changes in allostatic load. Allostatic load has been conceptualized as “the physiological burden imposed by stress” (Geronimus et al. 2006 ). It is quantified by a score based on assessment of the state of several physiological systems such as the brain, the cardiovascular and metabolic systems, and the immune system. The team was particularly interested in allostatic load because it has been shown to be socially patterned (Dowd et al. 2009 ), and thus may provide evidence for the biological underpinning of social inequalities in health. At the same time, they were well aware of methodological limitations since the calculated scores for allostatic load depend, among other things, on the available biomarkers for the different regulatory systems. The epidemiology team had previously studied the relationship between allostatic load and socio-economic position early in life. They wished to gain a more precise understanding of social adversity through the accumulation of adverse events. In addition, they wished to further examine the biological pathways linking social circumstances and health states: “We show that adversity has an effect on allostatic load and that allostatic load has an effect on mortality. So that’s it, we find our biological mediator. And then the question becomes, how is the allostatic charge actually incorporated?” (Gilles, doctoral student in epidemiology). Epigenetic mechanisms seem likely to play a role, as studies have shown that epigenetic changes mediated by the neuroendocrine system impact allostatic load and health states (McEwen and McEwen 2017 ).

In the EARLY project, the epidemiologists defined exposure to social adversity during childhood as a combination of adverse events (such as abuse, death of a parent, growing up in a foster home, having a parent in prison, or psychosis of a parent). They distinguished between groups of individuals with “zero adversity”, “one adversity”, “two adversities” and “+ adversities” (Ada). Their first discussions with the biologists aimed to define a protocol of cumulative stress to conduct experiments on mice: “We've put people around the table, saying, we're going to look at what happens in terms of adversity in humans, and pathologies in adulthood, including cancers and metabolic problems. Could you do the same in animals and see if the results are consistent?” (Ada). How did they make the case that putting mice under chronic stress may be useful for studying the biological effects of stress in humans? And how did they select the combination of stresses inflicted on mice? Epidemiologists and biologists built an “epistemic scaffold” between research on human cohorts and experiments on rodents (Nelson 2018 ) that relied on two particular arguments: the “neuroendocrine argument”, which claims that in several animal species, similar biological mechanisms may be at play and responsible for the deleterious effects of a lack of early maternal care—in particular, that induced by maternal separation—on stress responses, cognitive development and inflammatory responses (Meaney et al. 1991 ); and the “gut-brain axis argument”, which claims that gut microbiota and nutrition impact stress-related behaviors and mental health, and that nutrition and exposure to stress may interact (Valles-Colomer et al. 2019 ). The neuroendocrine argument is crucial in the choice of a mouse strain: “The C3H mouse was chosen because its maternal behavior makes the impact of maternal separation greater. The mother takes sawdust, everything in the cage, to make a nest. She lies on the nest, she nurses her cubs, she protects them, she wraps them” (Viviane, biologist). The selection of the cumulative stresses was justified by both neuroendocrinology and the literature on the gut-brain axis, as well as the expertise of biologists participating in certain experimental protocols of the project. The biologists assigned to different groups of mice the application of either a single stress model (nutritional stress applied to the pregnant female via an excessively rich diet or maternal separation stress), a two-stresses model (nutritional stress + maternal separation stress), or a three-stresses model (nutritional stress [pregnant female] + maternal separation stress + nutritional stress [pup]). The objective of the mice model was to “really model chronic stress applied to the mother and the child in the lactation period, a period of breastfeeding for the woman” (Viviane). The model was not set up to establish whether the effects of stress are similar to the effects of adverse events on humans. Rather, it was a matter of inflicting chronic and lasting stressors to mice, observing their physiological effects and studying the underlying biological mechanisms. The biologists planned to analyze epigenetic, metabolic and inflammatory profiles of several tissues (the brain, liver, hypothalamus, and epididymis) and of blood cells.

We have suggested that in France, epidemiological research on the biological embodiment of social environments is motivated by scientific expectations and by the desire to gain the level of credibility afforded to clinical epidemiology. In this context, the social epidemiologists who initiated the EARLY project chose to collaborate with biologists, in order to investigate epigenetic changes following exposure to early life adversity, which they operationalized as an accumulation of stressful situations. We now turn to the ambivalence of epidemiologists regarding the experimental mouse model’s usefulness in social epidemiology, and explore how they nevertheless managed to maintain their expectations.

Ambivalent epidemiologists

Reassessing scientific expectations for animal models.

For the epidemiologists of the EARLY project, experimentation on animals is more relevant than cohort epidemiology when studying the biological effects of exposure to an environment. First of all, this is because biologists are able to stabilize cumulative stress and its effects as the main variables of interest (Lappé 2018 ), in a way that is not accessible to epidemiological research (Bauer 2008 ). Biologists have a certain degree of control over the environments in which the animals evolve: “Biologists are a little more familiar with environmental conditions. […] They have a way of isolating the stress. They control everything else: the food is the same, the air is the same, mice don't smoke, they don't drink” (Ada, project leader). Biologists claim to establish direct links between the occurrence of stressful experiences and the biological effects that will ultimately lead to a health outcome. In contrast, depending on the variables available in a given cohort, epidemiologists are not always able to control for confounding variables (other environmental events or genetic conditions) or to identify mediating variables. This limits their ability to assert that the exposure being studied is causally related to the outcome being studied. Just as lab environments for mice must be as standardized as possible, likewise their genetic makeup be standardized to control for possible genetic factors. Epidemiologists are aware that mice of different strains do not respond in the same ways to stress, which is why they chose the C3H strain. They accept this limitation of experimental work because it guarantees a certain degree of quality (Chiapperino 2019 ; Lappé 2018 ; Nelson 2018 ). Secondly, animal biology is viewed as ahead of epidemiology in terms of identifying biological markers of material and social environments, due to both the availability of biological data and relaxation of experimental constraints. In particular, few cohort surveys include biological data obtained from the tissues of interest to epidemiologists: “We may not find anything in blood because we should have looked in another tissue. But in humans, it’s going to be difficult to find any tissue other than blood” (Karen, a senior researcher in molecular biology and epidemiology). In addition, the biological markers commonly used in epidemiology are not necessarily those that are the most relevant, as explained by Marieke, a Ph.D. student in molecular biology: “epidemiologists often look for interleukin 6 in people with plasma disease. But it’s a marker that is unstable and not relevant at all. Still, epidemiologists keep looking at this marker”. Animal experimentation, therefore, seems indispensable for identification of epigenetic biomarkers that may be present in humans. Lastly, animal experimentation is intended to establish and test hypotheses on the biological mechanisms at work in humans, and provide explanations for correlations established in human cohorts. Viviane, a biologist, recalled that “Barker's hypothesis worked and was popularized because animal models immediately proved that it had a basis experimentally. And then, based on these animal models, we went back to epidemiology.” Footnote 17 Karen justified the use of animal experimentation with the fact that certain biological systems function similarly across several species: “We can assume that the inflammation mechanism is preserved across the species barrier. When I started working on inflammation, I took a database that lists all the genes potentially involved in inflammation. I took them all without looking at all to see if they were found in animals, in this, in that”.

To sum up, experimentation on mice allows epidemiologists to conduct experiments that are impossible in humans for ethical reasons (e.g., in testing separation stress between mother and child), and to avoid experimental constraints (e.g., availability of biological data) or temporal limits (e.g., observing intergenerational effects). They expect that the biological markers identified will provide reliable proof, established in a controlled environment, of the existence of a biological pathway between the exposure of interest (i.e., social adversity) and a health outcome. They define the purpose of mouse stress protocols as to elucidate how stress acts biologically, not to investigate its actual effects in humans: “Mice eat the same, behave the same, sleep the same. […] In humans, there's always a cocktail effect. Humans eat pesticides, food additives, they breathe polluted air, they smoke/do not smoke, they drink alcohol. They eat fatty, rich, sweet, salty products. They smile, they are happy, they are unhappy. And that—all of that—it interacts” (Ada, project leader).

At the same time, EARLY’s social epidemiologists are ambivalent about the scientific utility of the mouse model for their own work. Their concerns reveal their commitment to the complexity of the experimental settings in the lab, and of the social environments studied (Nelson 2018 , p. 142). First of all, they question the extent to which laboratory protocols stabilize experimental situations, as environmental conditions are less controllable and standardizable than expected. In particular, a minor change in the handling of the mice can alter their behavior: “We used to house mice in a small room and we moved them to a larger room. And we can’t quite reproduce the same results. Because of the large room and because more people come and go, all the animals are stressed all the time. So our model doesn't work anymore, because even the control group is stressed” (Marieke, Ph.D. student in molecular biology). While biologists working on stress are very aware of the problem, especially when they have extensive training in the behavioral sciences, epidemiologists discover its prominence during the course of the project: “We realized that they had sources of variability much more frequent than they thought. They don’t control everything” (Ada, project leader). The epidemiologists’ response to the complexity and variability of the experiments is quite similar to that of biologists (Lappé 2018 ; Chiapperino 2019 ; Nelson 2018 ; Niewöhner 2020 ): they see it as further evidence of the relevance of studying the effects of the environment on gene function, particularly through epigenetics: “For us it’s great because it shows that even in situations we think [are] under control, tiny differences in the environment can alter the experimental results, underlining how not everything is genetic” (Ada). At the same time, they deplore biologists’ attempts to eliminate sources of variability rather than to integrate them into their analyses: the “extra-factual work” (Nelson 2018 ), especially the care work (Lappé 2018 ), and its effects on the experimental situation remain invisible.

Epidemiologists also question the ability of the experimental protocol to model social environments in a manner suitable to social epidemiology. It is not a matter of comparing the environments of rodents and humans, let alone rendering them equivalent. Instead, assessing the validity of the experimental model “involves an evaluation of both the biological features of the experimental organism being used and of […] the environment in which the organism develops” (Leonelli et al. 2014 , p. 4). In other words, epidemiologists seek to achieve balance between the functional value of animal experiments (i.e., their capacity to identify biological mechanisms that may be at play in humans) and their representational potential (i.e., the reproduction of human behaviors or pathologies; Lewis et al. 2013 ). At the time of our interviews, the research conducted on mice had provided preliminary results: in mice exposed to maternal separation stress, the genes involved in motivation showed different methylation profiles in the brain. In mice exposed to maternal separation stress and nutritional stress this difference disappeared; however, the mice become obese. The epidemiologists had not yet investigated in their human cohort whether exposure to the selected social adversities resulted in the same epigenetic marks. However, these results looked promising for the purposes of identifying certain biological effects of social adversity, thus demonstrating the functional value of the animal models: “We can imagine that there's a biological mechanism behind this. When we see that the two stresses that mice are exposed to interact or compensate for each other, it may suggest things in humans” (Ada, project leader). At the same time, epidemiologists credit animal experimentation with a certain representational potential. Even if the social adversity inflicted on mice was not representative of how adversity manifests itself in humans, the accumulation of stressful situations provides, in the epidemiologists’ view, a more accurate model of human environments than a single type of stress taken in isolation. Epidemiologists’ appreciation that EARLY does not fully grasp the complexity of social environments extends to the animal experiment and the human cohort study alike, as both components of the project only deal with environmental exposures with measurable physiological consequences. In the experiments on mice, this criterion precludes the study of protective or restorative social environments: the biologists consider it too difficult to adapt their protocol so as to include “environment enrichment”. Footnote 18 In the cohort study, the epidemiologists primarily focus on forms of social adversity that produce physiological stress—which they measured in previous projects by scores of allostatic load—even though they had fine knowledge of the various and disputed meanings of social adversity: “When it comes to psychosocial stress, the first two questions an epidemiologist asks are: How do you measure it? And is what you measured really what you wanted to measure? So we wanted to study an adversity that is commonly accepted as producing stress. For us, the gold standard for measuring stress is its physiological measures” (Alexis, senior researcher in epidemiology). Eventually, in communication with the biologists, the epidemiologists used social adversity interchangeably with chronic stressors or cumulative stress. Terminological indeterminacy facilitated navigation between experiments on mice and epidemiological research, and social adversity became a loosely defined “boundary concept” with strong cohesive power facilitating collaboration across disciplinary boundaries (Löwy 1992 ). Footnote 19 At the same time, the EARLY project set aside forms of social adversity that might not have strong physiological manifestations and did not account for possible resilience to stressors. This operationalization of social adversity in EARLY impeded collaboration with the sociologist involved in the project. This sociologist understood very well the experimental constraints of the experiments on mice, and agreed that the animal model had a high functional value. However, he expected social epidemiologists to have more flexibility in defining experimental protocols and was dismissive of how the validity of the experimental context was defined in EARLY (Leonelli et al. 2014 ). Its low representational potential made it of no interest, in his opinion, to social epidemiology: “the attempt to reproduce social phenomena in the laboratory seems absurd. The problem is that you model these notions of stress, adversity, in the non-human animal model, as to whether one licks the little one enough or not. Where is the social? It’s a bit of a stretch to reduce maternal care to licking” (Pierre, senior sociologist).

Epidemiologists manage their ambivalence towards the scientific value of experiments on mice for social epidemiology in two ways: they accept that the stabilization of experimental situations comes at the price of rendering its variability invisible; and they prioritize the search for biological mechanisms over the representativeness of social environments modeled in the laboratory. We will now explore how epidemiologists are uncertain whether their interdisciplinary project will serve a conception of public health policy that addresses the social determinants of health inequalities.

Sending the right message: credibility tactics against potential misuses of their research

At the time of our interviews, the social epidemiologists were still a long way from producing public health recommendations based on EARLY; however, they emphasized their goal of identifying the social determinants of health inequalities and of providing population-based public health recommendations. Their previous research on allostatic load as well as their references to the concept of biological embodiment position them among social epidemiologists who promote a ‘critical physiology’—that is, who argue that physiological measures reflect socio-historical contexts (Arminjon 2016 ) and that public action should target the socioeconomic conditions that produce individual pathologies. While established in social epidemiology, this approach remains marginal compared to the biomedical perspective that aims to correct individual deviations from health norms. Epidemiologists were concerned that their work in social epigenetics could give credence to this biomedical perspective, coupled with an individualistic vision of health risks and inequalities, especially since it claims to provide molecular evidence of the biological embodiment of stress and its intergenerational effects.

The epidemiologists believe, however, that the EARLY project should not support such policies, as the cumulative stress model focuses on adverse environments rather than on single adverse events or individual behaviors. In addition, they do not view the experiments on mice as placing emphasis on the responsibility of mothers, even though the experimental protocol for psychosocial stress aims to study the behaviors of mouse mothers and how their relationships with their pups affect their health. Yet, in the epidemiologists’ discourse, it is as though the cumulative stress model escapes a “politics of experimental design” (Kenney and Müller 2017 ; Sharp et al. 2018 ) targeting mothers, which operates by associating their centrality in the experimental situation with social stereotypes about maternal roles and responsibilities (Chiapperino and Panese 2018 ). Footnote 20 But at the same time, EARLY’s social epidemiologists know that the experiments on mice can be interpreted differently, as they contribute to the DOHaD perspective in behavioral and developmental biology, which in their view conveys a radically different public health message than their own—pointing to individual responsibility, especially that of mothers; emphasizing early-life determinism rather than biological plasticity over the life-course (Müller and Samaras 2018 ), and employing different credibility tactics, such as outright animal-to-human extrapolations. At the end of 2018, we joined the epidemiologists in attending the annual congress of the DOHaD French society. We observed how they strongly disapproved of certain ways biologists presented their results. Footnote 21 In particular, a post-doctoral researcher presented how he had used a rodent model to study the effect of weight change in a pregnant female mouse on the health of her newborn pups. At the end of his presentation, a senior researcher from the audience asked him about public health recommendations to be implemented. The post-doctoral researcher answered that the French High Authority of Health already recommended that doctors warn obese women of the risks associated with a possible pregnancy. The senior researcher then argued that much stricter measures should be taken—without specifying what these measures should be. In short, she used the results of an animal experiment on about 30 mice to suggest broad public health measures that could potentially restrict individual freedoms. The social epidemiologists involved in EARLY did not deny that weight gain or loss during pregnancy can have an effect on health, but pointed out that animal models do not allow quantification of this impact in humans: “The real question is […] does it explain 10%, 50% or 1/1000 of the phenomenon?” (Alexis, senior epidemiologist). They criticized the tendency of some biologists contributing to the DOHaD perspective to oversell their research by emphasizing its relevance for public health: “It's ridiculous to make a conceptual leap from the non-human animal model to “there's now enough evidence to say that an obese pregnant woman is going to create problems for her child.” And on that basis, telling women to lose weight before they get pregnant? And there are people in France who are very much in favor of these actions. […] As a researcher and as a woman, I've always found it really disturbing” (Ada, project leader).

EARLY’s epidemiologists are also concerned about how the mainstream press reports on environmental and social epigenetics and fear that their aim of intervening in the social milieu may be misinterpreted as an assertion that each individual bears the responsibility for their health. Their opinions are very similar to the conclusions drawn by social science researchers (Pentecoste and Meloni 2020; Richardson et al. 2014 ; Chiapperino and Testa 2016 ; Lappé 2016 ), some of whom they have met at conferences or whose papers they have read. By pointing to the biological effects of individual behavior, social epigenetics could be used in the future to promote repressive public health measures focused on individuals, especially in cultural, legal and political contexts that promote individual responsibility in healthcare over social responsibility Footnote 22 :

Epigenetics [...] raises, for example, the question of the responsibility of one generation towards the next or the value of health in relation to that of other freedoms. It also raises questions about the implementation of policies that focus on the individual versus those that focus on the social and collective conditions. (Ada, senior researcher in epidemiology)

The social epidemiologists adopted several credibility tactics to avoid possible misinterpretation of their research. They concluded some of their oral presentations (e.g., during training courses for health professionals, seminars with social scientists, and talks during the annual congress of the French DOHaD society) with slides in which they criticized sensationalist journalistic discourse about social epigenetics. In addition, they were cautious in presenting the potential impacts of their research. On the scientific level, they insisted on the importance of positioning epigenetic changes linked with social adversity in the complex causal chains through which everyday experiences impact cells, organs and physiological functioning. They also reminded their audiences that these social experiences are diverse, and that they occur in distinct temporalities. With regard to public health outcomes, they recalled that the vocation of epidemiology is, on one hand, to produce population level predictions of a probabilistic nature, and not to establish individual diagnoses; and on the other hand, to produce recommendations for categories of populations, and not to prescribe behaviors or actions:

I have quite recently added precautionary slides on how our work can be used. Because I’ve been told, “You've been working on adversity and motherhood, you're saying that if a child has gone through this when he was little, he's going to die sooner”—with the aim of making a diagnosis based on our definition of adversity, which is a tool for epidemiological work, and of being able to say, “If this child has three adversities, he’s at risk and we have to take him out of his environment.” That worries me a lot. (Alexis, senior researcher in epidemiology)

In contrast to biologists who cite research on rodent models as evidence in itself for human populations (Lloyd and Raikhel 2018 ), and to epidemiologists who mention epigenetics for the purpose of giving “molecular credibility” to observational studies in human cohorts (Kenney and Müller 2017 , p. 38), these social epidemiologists seem to take particular care to never say or write that experiments on mice prove that similar biological responses are at work in humans. Their communication is remarkably subtle, as they only refer to laboratory experimentation to hypothesize that the phenotypic changes observed in humans following environmental exposures may be underpinned by a biological mechanism. Furthermore, epidemiologists are careful to point out that this needs to be confirmed by further experimental research and that this would not infer anything about the actual impact of such environmental factors in real life:

If the changes observed in the brains of mice can also be observed in the blood (which remains to be analyzed), and if these same changes are observed in the blood of people subjected to adversities during childhood, we can imagine that these adverse exposures are likely to be associated with epigenetic changes in the reward circuit in humans, which can then be associated with behaviors such as smoking, alcohol, or even pathologies such as obesity found in greater proportion in people exposed to adversities. (Ada)

Lastly, their credibility tactics seem to have limited success with their French colleagues in the social sciences, as already illustrated by the critical stance of the sociologist involved in EARLY. While the social epidemiologists would like to get closer to the social sciences, they fear being accused of ‘biologizing’ the social. We attended a talk given by Ada in an auditorium packed with social science students and researchers at a French University, during which she took a defensive stance even before being asked how she studies the biological embedding of social environments: “We talk about a social biology, not about sociobiology. Footnote 23 I don't explain the social with biology. I'm trying to explain biology with the social. That’s different, it’s a total reversal. That’s important!” (Ada, project leader). She then backed up her argument by emphasizing that sociologists promote the same shift in perspective: “That’s what Meloni says in his book—that we have the possibility with epigenetics that the biological opens up completely to environmental influences. And so, we have the impression that the social has a causal role in biological functioning. That too is new.” Footnote 24 In their view, French social science researchers are either suspicious or don’t grasp the novelty of their approach: “For someone in the social sciences, explaining that social organization is likely to influence the health status of populations is nothing new” (Ada). On the contrary, these social epidemiologists find interdisciplinary dialogue with anthropologists and sociologists to be smoother, more widespread and recognized in countries such as the United States and the United Kingdom, for two reasons: the disciplinary boundary between health sociology and social epidemiology is much less defined, with the two specialties frequently collaborating in epidemiological cohort studies; and there are more sociological studies that explore the interpenetration of biological (genetic and epigenetic) and environmental factors in the constitution of social inequalities (Shostak and Freese 2009 ; McEwen and McEwen 2017 ).

The scientific literature as well as the general media tend to present social epigenetics as a promising area of research for discovering the mechanisms of the biological embodiment of social environments and providing evidence of their physiological effects during the life of an individual and their offspring. Much of this research is done on animals, which are used by biologists to model human behaviors and environments. In-depth laboratory studies have shown that biologists engage with “distinct layers of complexity” (Chiapperino 2019 ), in considering experimental settings and human social environments modelled in the lab. Biologists have also been described as “pragmatic reductionists” (Niewöhner 2011 ) who are very aware that their experimental systems imply oversimplifications, but see this as the price to pay for producing knowledge that may have both scientific validity and relevance for human health. While this body of work provides very rich descriptions of the “complexity talk” (Nelson 2018 ) of biologists working on gene-environment interactions, as well as the “epistemic scaffolds” (op. cit.) they establish between experimental models and humans, there has been little inquiry into how epidemiologists make use of animal models to study the effects of environments on human health, and whether they engage in the same kind of complexity talk.

In this paper, we have addressed these issues by investigating a project focused on the epigenetics of social adversity during early life that involved close collaboration between social epidemiologists and biologists as well as occasional exchanges with social scientists, in the French context. Both the epidemiological and biological components of the project aimed to study the physiological effects of cumulative stresses—either multiple adverse events during childhood or a combination of psychosocial and nutritional stressors applied to mouse mothers and pups—and their underlying biological mechanisms. The scientific arguments supporting the “epistemic scaffolds” (Nelson 2018 ) between rodent experimentation and epidemiological research were borrowed from biomedical research in neuroendocrinology and research on the gut-brain axis. We have argued that the EARLY’s social epidemiologists were ambivalent towards the scientific utility of laboratory experiments on rodents for studying the biological embedding of human social environments, as well as in regard to the capacity of this interdisciplinary project to advance their agenda for public health. We have emphasized that this research was conducted in France, where social epidemiology is less developed than it is in other countries, where analyses of the biological incorporation of social environments remain infrequent, and finally, where clinical epidemiology dominates, with the primary objective of uncovering individual risk factors. The EARLY project was initiated by two senior social epidemiologists eager to strengthen their specialty and develop an interdisciplinary dialogue in public health research that they thought would be too limited in France. For these social epidemiologists, close collaboration with biologists represents an unprecedented opportunity for gaining scientific credibility, whereas the prospect of uncovering the biological mechanisms that perpetuate social inequalities in health stands as a source of scientific enthusiasm and a “hopeful vision” (Nelson 2018 , p. 72). We studied a project “in the making” and at a time when epidemiologists had not yet explored whether the epigenetic marks that biologists observe in animals under stress were also found in humans subjected to one or more situations of social adversity. This may explain why expectations, hopes and doubts are so prominent in their discourse. In a way, when observing this particular stage of the project we witnessed project participants expressing the kind of scientific uncertainty that tends to be overlooked once research is completed and published.

We have described how EARLY’s social epidemiologists managed their ambivalence about experiments on mice and thus maintained their scientific expectations: in particular, by prioritizing study of the forms of social adversity that produce physiological stress, and by giving predominance to the functional value of animal experiments (their ability to provide a reliable measure of the biological manifestations of social experiments) over their representational potential (their suitability for accurately representing human behaviors and environments). We have also depicted the credibility tactics they deployed to convince researchers outside of their scientific community and a wider audience that their research could point to the social causes of health inequalities. In particular, they differentiated their research from that of biologists from the DOHaD perspective, who in their view have the tendency to overestimate the representational potential of animal models, and to extrapolate animal-based research to human populations. In addition, they multiplied cautionary statements about how to interpret laboratory findings regarding the biological mechanisms induced by exposure to adverse social environments. Lastly, we emphasized the mixed success of their credibility strategies. These social epidemiologists run the perpetual risk that the potential public health benefits of their research will be dismissed outright by clinical epidemiologists who remain skeptical of the validity of the physiological measures of exposure to social adversity. Their results may also be misinterpreted by public health policy-makers as predictive of the health outcomes of individuals, whereas the ultimate goal of these epidemiologists is to improve the accuracy of population-level predictions. Finally, the use of animal models in social epigenetics proved to be a double-edged sword for these social epidemiologists. On one hand, it could provide evidence that social adversity is biologically embedded and intergenerationally transmitted through epigenetics, giving social epidemiologists a much-needed institutional legitimacy and respectability in the French context; on the other hand, it has the potential to legitimize health policies focused on individual responsibility rather than on the social causes of health inequalities.

More broadly, our study of a project involving biology and social epidemiology offers new perspectives on research practices in the post-genomic sciences, i.e., those research areas which criticize simple assumptions about genetic causality (Landecker 2016 , p. 80) and emphasize “complexity, indeterminacy and gene-environment interactions” (Richardson and Stevens 2015 , p. 3). Throughout this article, we have addressed how EARLY’s social epidemiologists contribute to the “complexity talk” characteristic of the post-genomic sciences (Nelson 2018 ), and we have related their “assumptions of complexity” to their epistemological commitments (op. cit., p. 23). We found significant similarities between their commitment to the complexity of experimental situations and that of biologists. After having experienced a moment of “complexity crisis” due to the unexpected variability of rodent experiments (“where they began to doubt that anything could firmly be said about genes and behavior at all”; Nelson 2018 , p. 19), the social epidemiologists began to engage with ideas of “situated biologies” (Niewöhner and Lock 2018 ). It was through dialogue with the biologists that the epidemiologists acknowledged that even subtle environmental changes result in biological responses, but that they are rendered invisible to stabilize the experimental laboratory settings. We also found commonality in the way EARLY’s social epidemiologists and biologists approached the complexity of human social environments to be represented in the lab. On this subject, epidemiologists do not draw a sharp distinction between the reductionism at work in epidemiological research and that found in laboratory experiments: they are aware of being “pragmatic reductionists” (Niewöhner 2011 ) when choosing exposure variables in their cohort, just as biologists are when designing their stress models. At stake in interdisciplinary dialogue is ensuring that epidemiological and biological research protocols convey a similar, albeit limited, representation of the complexity of social environments, which was conceptualized in EARLY as an accumulation of adverse or stressful situations.

This article also addresses how interdisciplinary exchange with the social sciences may contribute to dialogues on complexity in the post-genomic sciences. Sociological or anthropological investigation may aim to elucidate which visions of the social are embedded in the experimental settings of environmental and social epigenetics (this was also our original intention) and to guide researchers in clarifying the assumptions embedded in their work as well as the social issues involved in its potential uses. Chiapperino and Panese ( 2018 ) describe the reflexivity of the scientists interviewed for their study as “thin and under-theorized” (p. 11). On the contrary, in the project we studied, social epidemiologists were highly reflexive, deeply concerned with how they defined and operationalized the social in their research, and relied on social science research to question the normativity of the experimental settings in social epigenetics as well as the public health messages their research could give credence to. While their reflexivity and their commitment towards interdisciplinarity are partly due to their personal research experiences, these qualities more broadly reflect the development of research perspectives in social epidemiology which advocate for more dialogue between and integration of epidemiology and social theory (Wemrell et al. 2016 ), in particular the life course approach to chronic disease (Ben-Shlomo and Kuh 2002 ), and the theory of the biological embodiment of health inequalities (Krieger and Davey-Smith 2004 ). While they may remain unmet in other research fields, ongoing calls to develop “sociological-cum-biological research programs” in environmental and social epigenetics (Meloni 2013 ) find a particularly strong echo within these two research agendas in social epidemiology. In this context, our study provided a space where epidemiologists could explain their scientific objectives and freely express their ambivalence, as well as the tensions and contradictions inherent in their approaches. Having expressed from the outset our interest in studying whether social epigenetics may renew the interdisciplinary dialogue between the biological sciences and the social sciences, epidemiologists did not consider us a priori suspicious of the study of the biological incorporation of social environments, an attitude they had previously observed among French social scientists. While they needed to be more assertive in other communication arenas, they freely expressed their difficulties and reflected on the limitations of interdisciplinary dialogue with biologists. Our study was also an opportunity to evoke the relative failure of their previous exchanges with sociologists who criticized the implicit visions of the social embedded in the experimental settings with mice, or even disagreed with the importance of discovering biological mechanisms.

Social scientists have argued that tensions “between collective and molecular/individual interventions [are] at the core of epigenetics’ biopolitics” (Chiapperino and Testa 2016 , cited by Chiapperino 2019 ), and that environmental and social epigenetics may sustain several social and political imaginaries (Chiapperino and Panese 2018 ; Lamoreaux 2016 ). Our study of the EARLY project contributes to this discussion, as this interdisciplinary project navigates between three conflicting imaginaries. The first is put forward by social epidemiologists working on the biological embodiment of social conditions: it is oriented towards identifying the social causes of health and illness by demonstrating that exposures to environments harmful to health (e.g., exposure to toxicants, lack of social support, reduced access to medical care etc.) are socially patterned, defining social interventions at different levels (neighborhoods, households, low-income populations, etc.) and ultimately reducing social inequalities in health. Projects such as EARLY offer hope of providing biological evidence of how deprived social environments, where people experience an accumulation of stresses, leave their marks on bodies. However, this imaginary struggles to find any support among French social scientists, who are either not convinced of the need to demonstrate biological proof of the influence of the social, or are alert to the risk of biologizing social adversity. A second imaginary was developed by clinical epidemiologists aiming to identify risk factors (e.g., age, blood pressure, diet, physical activity) for certain diseases, with the goal of designing prevention measures for at-risk populations. Central to risk-factor epidemiology are the measurement and statistical control of potential confounding variables, such as geographic location, genetic predisposition, diet, tobacco smoking, level of education and occupation. Social epidemiologists initiated the EARLY project with the desire to gain some of the credibility afforded to clinical epidemiology, and with the hopes of demonstrating that social environments are not just possible confounders in epidemiology, and that cumulative exposure to social adversity has measurable biological effects. However, they are concerned that their research might be taken up to identify risky behaviors (e.g., having a high-fat diet) and to provide a rationale for both “the micro-management of the individual body” and “the macro-surveillance of the body politics” (Saldaña-Tejeda 2018 ). A third and last socio-political imaginary is shared by biomedical researchers, among others: it aims to find, based on experiments on non-human animals, actionable biological targets for pharmacological or behavioral interventions. The reversibility of certain epigenetic marks linked with environmental exposures gives credence to this imaginary, as well as experimental results suggesting that by combining several exposures, researchers can cancel out the deleterious effect of a given exposure on the epigenetic machinery. Highly visible in the biological component of the EARLY project, this third imaginary strengthens that of clinical epidemiology by specifying the pharmacological treatments and interventions that could be proposed to at-risk populations. Finally, in a context dominated by clinical and biomedical approaches to health, the difficulties confronting these French social epidemiologists as they work to reinforce a socio-political imaginary supporting the study of the biological incorporation of social environments are reminders that social epigenetics can, in theory, feed competing imaginaries and potentially reinforce the notions of risk factors, individual responsibility for one’s health, and behavioral prescription.

Change history

07 october 2021.

A Correction to this paper has been published: https://doi.org/10.1057/s41292-021-00254-4

Changes to chemical markers which are either attached to a DNA sequence or which modify the chromatin structure, a complex of proteins and DNA found inside the nucleus of eukaryotic cells.

Source: https://www.cdc.gov/careerpaths/k12teacherroadmap/epidemiology.html . Accessed 6 Sep 2020.

The study of epigenetic changes associated with so-called material, physical and social environmental exposures such as toxins, air pollution, or ‘lifestyle’ (e.g., nutrition, physical activity, tobacco use).

For a recent overview of the reasons why anthropologists, sociologists, philosophers, and political scientists are taking an interest in environmental and social epigenetics, see Niewöhner and Lock ( 2018 ).

Hereafter, we will refer to non-human animal models as animal models.

Landecker ( 2011 ) has emphasized how food gets “molecularized” (i.e., reduced to molecular events) in nutritional epigenetics. In addition, two articles—Richardson ( 2015 ) and Kenney and Müller ( 2017 )—focus on a seminal, highly-cited study by Weaver et al. ( 2004 ) which argues that poor maternal care epigenetically predisposes rat pups to elevated levels of stress. Lastly, three ethnographic surveys—Niewöhner ( 2011 ), Lappé ( 2018 ), and Chiapperino ( 2019 )—were carried out in labs conducting experiments on the effects of early-life stress on rodents.

However, two articles deal with the transposition of animal studies to human populations and put emphasis on the “molecularization” of human social environments taking place in this context. Lloyd and Raikhel ( 2018 ) studied how a group of psychiatrists at McGill University in Montreal built on a Weaver et al. ( 2004 ) experiment on rats to study the impacts of childhood abuse on increased suicidal risk in humans (McGowan et al. 2009 ). In addition, Niewöhner ( 2011 ) studied a collaboration between biologists and epidemiologists to see how changes in social positions correlate with changes in DNA methylation.

There is an imbalance between the wealth of studies on animal experiments conducted in genetics, genomics and post-genomics (e.g., Shostak 2007 ; Lewis et al. 2013 ; Leonelli et al. 2014 ; Nelson 2018 ), and the still limited body of research that focuses on their use by human health researchers in general, and epidemiologists in particular. For instance, Ackerman et al. ( 2016 ) and Darling et al. ( 2016 ), who describe the work of epidemiologists in gene-environment interactions research, make only a passing mention of their use of animal models.

Social epidemiology applies both the multi-causal approach (integration of cultural, economic and social factors) and the multi-level approach (population, community, and individual levels) to determinants of health in order to understand the origins of social inequalities in health (Susser and Susser 1996 ; Shim and Thomson 2010 ).

They cite human studies on the epigenetic modifications caused by early-life nutrition (Heijmans et al. 2008 ) and the association between socioeconomic position during childhood and DNA methylation in adulthood (McGuinness et al. 2012 ; Borghol et al. 2012 ); they also refer to animal studies on the epigenetic changes associated with early exposure to psychosocial stress (Weaver et al. 2004 ) and to pesticides (Anway et al. 2005 ).

The DOHaD perspective started with the hypothesis of a fetal origin of adult diseases (Barker 1990 ). Initially focused on fetal undernutrition, it was extended in the 2000s to postnatal nutrition, early psychosocial adversity and early exposure to environmental toxicants (Gluckman et al. 2005 ). Currently, the DOHaD perspective brings together researchers from epidemiology and the biomedical sciences who study how experiences in the early years of life impact health in adulthood. It is not a unified theory but rather a loose conceptual framework which supports a variety of scientific claims: some DOHaD researchers argue, for instance, that health is ‘programmed’ early in life, others give more consideration to biological plasticity throughout life (Samaras and Müller 2018). In addition, DOHaD-inspired policy measures vary substantially across space and time. For instance, while Barker’s hypothesis emphasized geographical and socioeconomic constraints on the health of mothers and children, the reproductive medicine literature that followed showed a “ narrow understanding that locates the reproduction of obesity in the interiors of women’s bodies ” (Warin et al. 2011 , p. 458).

In order to preserve the anonymity of the researchers involved, we refer to this project by this invented name which insists on the temporality of the adverse events studied. All data have been de-identified and the names of the participants changed.

We attended conferences where several of the scientists involved in EARLY presented their research. We also organized two meetings with the team of social epidemiologists to discuss their research and to present our preliminary analysis. Lastly, we invited members of the team to present their work during one of our lab seminars.

To study the biological incorporation of social human environments, epidemiologists use the biological material collected in the cohort (e.g., blood samples).

For example, a series of articles tested the hypothesis of a correlation between socioeconomic levels and methylation of genes involved in the inflammatory system (Miller et al. 2009 ; Borghol et al. 2012 ; Stringhini et al. 2015 ). The authors selected these genes from studies conducted on rodents or monkeys subjected to various situations of social adversity (e.g., prenatal stress, lack of maternal care, or dominated position in the group).

David Barker mentions parallel findings between epidemiological surveys, clinical and animal research on the long-term effects of prenatal nutrition, pointing “to the importance of long term programming in early life” (Barker 1990 , p. 1111).

Environmental enrichment designates changes in the environments of animals held in captivity that aim to improve their general well-being. Marieke, a Ph.D. student in molecular biology in charge of conducting the experiments on mice, said she would have liked to integrate “small toys for mice so they don't get bored”. However, her Ph.D. supervisor declined this request, arguing that adding these elements might render the results non-cumulative with previous work: “If we now place a small tunnel in their cage, we can no longer say that they have suffered the same stress as those of two years ago” (Marieke). Chiapperino ( 2019 ) has studied one of the few labs in environmental epigenetics that set up “enriched” environments so as to consider a more complex vision of social environments.

I. Löwy defines “boundary concepts” as a class of “boundary objects” (Star and Griesemer 1989 ) that “facilitate the constitution and the maintenance of heterogeneous interactions between distinct professional ‘groups’” (Löwy 1992, p. 375).

As emphasized below, this is a major source of disagreement with the sociologist involved in EARLY.

DOHaD biologists are much more nuanced in other circumstances, for instance when they reflect on their practices during sociological interviews (Chiapperino and Panese 2018). The biologists of the EARLY project also stress the importance of the broader context for putting mothers under stress. Viviane, for example, told us: “Thanks to the stress model of maternal postnatal separation, we can draw attention to the fact that this is a critical period. And that women who become single may be more at risk of transmitting chronic stress to their child, which would be harmful in adulthood”.

In their view, social epigenetics could be used to establish new surveillance modalities for pregnant mothers and newborns and justify the need for preconception care. The EARLY’s social epidemiologists point to an example in the United States: in the state of Tennessee, mothers have been sentenced to prison terms for having consumed illegal drugs during their pregnancy, if it caused their child to become disabled (Tennessee Senate Bill SB 1391, passed by the House on April 9, 2014). The bill does not rely on scientific evidence provided by epigenetics, however the social epidemiologists believe that social epigenetics could lend more credence to such policy measures.

In the mid-1970s, the term ‘sociobiology’ was introduced to designate the study of the biological basis of human and non-human animal social behavior (Wilson 1975 ).

During her talk, Ada referred to Meloni ( 2016 ).

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Romijn, F., Louvel, S. Epidemiologists’ ambivalence towards the epigenetics of social adversity. BioSocieties 18 , 25–50 (2023). https://doi.org/10.1057/s41292-021-00248-2

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How social evaluations shape trust in 45 types of scientists

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Software, Visualization, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Departement of Social Psychology, University of Amsterdam, Amsterdam, The Netherlands

Roles Conceptualization, Investigation, Methodology, Supervision, Writing – review & editing

Roles Conceptualization, Funding acquisition, Investigation, Methodology, Supervision, Writing – review & editing

• Vukašin Gligorić, 
• Gerben A. van Kleef, 
• Bastiaan T. Rutjens

• Published: April 18, 2024
• https://doi.org/10.1371/journal.pone.0299621
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Science can offer solutions to a wide range of societal problems. Key to capitalizing on such solutions is the public’s trust and willingness to grant influence to scientists in shaping policy. However, previous research on determinants of trust is limited and does not factor in the diversity of scientific occupations. The present study ( N = 2,780; U.S. participants) investigated how four well-established dimensions of social evaluations (competence, assertiveness, morality, warmth) shape trust in 45 types of scientists (from agronomists to zoologists). Trust in most scientists was relatively high but varied considerably across occupations. Perceptions of morality and competence emerged as the most important antecedents of trust, in turn predicting the willingness to grant scientists influence in managing societal problems. Importantly, the contribution of morality (but not competence) varied across occupations: Morality was most strongly associated with trust in scientists who work on contentious and polarized issues (e.g., climatologists). Therefore, the diversity of scientific occupations must be taken into account to more precisely map trust, which is important for understanding when scientific solutions find their way to policy.

Citation: Gligorić V, van Kleef GA, Rutjens BT (2024) How social evaluations shape trust in 45 types of scientists. PLoS ONE 19(4): e0299621. https://doi.org/10.1371/journal.pone.0299621

Editor: Claudia Noemi González Brambila, Instituto Tecnologico Autonomo de Mexico, MEXICO

Received: July 31, 2023; Accepted: February 13, 2024; Published: April 18, 2024

Copyright: © 2024 Gligorić et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: The database and the R script used for analyses can be found at OSF: https://osf.io/d5zcj/ .

Funding: This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No. 849125 awarded to Bastiaan T. Rutjens). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Scientists can offer valuable insights and possible solutions when faced with pressing environmental and societal problems such as climate change or the COVID-19 pandemic. However, trust in scientists is brittle. For example, during the COVID-19 pandemic trust in science and scientists has been documented to have decreased in several countries, including France, Italy, and the US [ 1 , 2 ]. But also before the pandemic trust levels left much to be desired: In 2018, only 18% of the world population reported high levels of trust in scientists [ 3 ]. Given that trust in scientists is one of the key predictors of positive attitudes and compliance with science-based recommendations (e.g., vaccination [ 1 ] or pro-environmental behavior [ 4 , 5 ]), insights into how trust in scientists is shaped and can be enhanced are crucial. However, the current understanding of trust in scientists is hampered by the implicit assumption that all scientific occupations are the same. This state of affairs hinders the successful implementation of science-based solutions to societal challenges. In the present research, we address this problem by investigating how trust is shaped by social evaluations across 45 scientific occupations, as well as how these social evaluations subsequently shape willingness to grant scientists influence in managing societal problems.

Diversity of scientific occupations

Science is not a monolithic enterprise: It consists of a plethora of disciplines that each comes with its own goals, values, and approaches. It is conceivable, then, that perceptions of scientists and trust in scientists differ across scientific occupations. Indeed, previous research shows that the term “scientist” is an overgeneralization. In a systematic investigation of social evaluations of more than 30 scientific occupations in the US and the UK, Gligorić and colleagues (2022) found that people perceive meaningful differences between different scientific occupations [ 6 ]. For example, sociologists were regarded as less competent than neuroscientists, whereas zoologists and related occupations were seen as the most moral and sociable. These differences in social evaluations could be empirically captured in clusters (e.g., biomedical scientists, data scientists). Similarly, Altenmüller and colleagues (2024) showed that scientific occupations also differ in perceptions along the ideological line of liberalism-conservatism, so that some occupations (e.g., sociologists, climate scientists) are seen as more liberal than others (e.g., mathematicians, chemists) [ 7 ]. Trust, too, varies across different types of scientists: For example, people hold more positive perceptions of publicly (vs. privately) funded scientists [ 8 ], and some scientists work on issues that are caught in the crosshairs of heavily politicised public debate (e.g., climate science, vaccination), which can trigger science scepticism [ 9 ].

Crucially, how this diversity translates to trust in scientists is to date unknown. This is because most research investigating scientist perceptions has focused on the generic term “scientists”. Some exceptions are disparate studies of one or two specific groups or categories, such as scientists working on genetic modification (GM) [ 10 ], chemists and biologists [ 11 ], and mathematicians [ 12 ]. To date, however, no systematic comparison of trust in different types of scientists has been conducted. This is problematic because it remains unknown whether interventions aimed at increasing trust should be tailored to specific (groups of) scientists or scientists in general.

Trust in scientists

Social evaluations as antecedents of trust..

What are the factors that contribute to trust in scientists? Some researchers point to the importance of social evaluations. Notably, Fiske and Dupree (2014) suggested that even though scientists are seen as competent, their perceived lack of warmth might contribute to lower trust [ 13 ]. This work is based on the two-dimensional Stereotype Content Model (SCM; [ 14 ]), which posits two social evaluation dimensions– competence and warmth . Although SCM is one of the best-known social evaluation models, other models proposed different structures of social judgment, arguing for separation of morality and warmth (e.g., politicians can be perceived as friendly, but immoral; [ 15 – 17 ]), separation of competence (capability) and assertiveness (confidence) [ 15 ], or even adding a new dimension (conservative-progressive beliefs) [ 18 ]. In a recent adversarial collaboration, researchers who posited five different social evaluation models attempted to integrate these models [ 19 – 21 ]. Their integration suggested that further division of the Big Two factors (Agency/Vertical dimension and Communion/Horizontal dimension) into four facets (competence and assertiveness; morality and warmth) is the most appropriate structure of social judgment [ 19 – 21 ]. Such distinctions showed to be useful for understanding evaluations of scientists as well, given that research has shown that scientists are not only seen as very competent (intelligent, smart), but are also perceived as more moral than warm, as well as more competent than assertive [ 6 , 22 ]. However, although social evaluation models are a promising path to increasing understanding of trust in scientists [ 13 ], to our knowledge, no research has directly tested how social evaluations of groups subsequently relate to trust. In other words, work so far leaves the question of how well-established social evaluations of scientists shape levels of trust in them. Additionally, as mentioned before, it is unknown whether the role of social evaluations in trust varies across occupations.

Another, somewhat related, strand of research on trust (in scientists) comes from organizational psychology, which suggests that trust is composed of three components: ability (skill, expertise), benevolence (self-interest vs societal benefits), and integrity (fairness and honesty) [ 23 ]. Trust in scientists could be, in principle, somewhat different as laypeople are unable to understand different scientific information without specialized knowledge in that area. Yet, the three-component model of trust has also shown to be applicable within the context of scientists: Hendriks and colleagues (2015) found that scientists were evaluated on these three dimensions [ 24 ]. More recently, it has been suggested that the factor of “openness” should be added as a fourth component of trust in scientists [ 10 ]. However, due to high intercorrelations between components, neither study tested the relative contribution of these dimensions to trust. These intercorrelations are expected (and inevitable) given that they are seen as trust components (parts of trust), rather than factors influencing trust. With this in mind, the current work focused on social evaluations as predictors, because they 1) are more clearly conceptualized in the literature, 2) show lower intercorrelations, and 3) potentially shape trust, rather than merely representing components of trust. Importantly, we did not focus solely on trust ratings, but we also included the consequence of trust, which we operationalized using a novel influence granting task (see pilot studies).

The present study

In the present study, we investigated trust in many different groups of scientists. Specifically, we tested whether and how four theoretical social evaluation dimensions (competence, assertiveness, morality, warmth; [ 19 , 25 ]) contribute to trust across 45 different scientific occupations. Moreover, we examined how trust in turn shapes the willingness to grant scientists influence on the management of complex societal problems, by including a novel influence granting task (details about pilot studies conducted to develop this task can be found in the S1 File ). Incorporating this task enabled us to investigate not only the influence of social evaluations on trust perceptions, but also to assess the downstream consequences of these perceptions in a more ecologically valid way.

Participants

As pre-registered, we aimed to collect data from 2813 participants. This sample size was determined based on the notion that correlations stabilize at around 250 participants [ 26 ]. Since each participant rated four (out of 45) occupations (see procedure), we needed 2813 participants (= 250*45/4) so that each occupation would obtain ratings from approximately 250 participants. To account for anticipated exclusions (see below), we sampled 3246 participants from Prolific, selecting only US participants whose minimum approval rate was 95/100. Participation took around 10 minutes, and participants were paid £1.05 (approx. $1.16 or €1.20). As pre-registered, we excluded participants who failed an attention check question ( n = 334), speeders (twice faster than the median of 610 seconds; n = 82), and multivariate outliers (Mahalanobis distance on each item of the dependent variable, n = 50), which left us with a final sample of N = 2780 (1333 men, 1382 women, 65 indicated “other”; M age = 39.03, SD age = 14.93). Regarding education, 0.7% indicated education less than high school, 25.3% had completed high school, 12.7% were students, 42.3% had an undergraduate degree, and 19.1% had a graduate degree. The sample was slightly liberal ( M = 3.07; SD = 1.76; range 1–7) and somewhat religious ( M = 3.03; SD = 2.09; range 1–7). No analyses were performed before data exclusion.

Procedure and materials

Ethical approval was obtained at the authors’ university. We report all measures used in the study. After reading the information letter and signing the consent form, participants reported their demographics, political orientation, and religiosity. Next, each participant was asked to rate four scientific occupations on several attributes. The four occupations were randomly selected out of 45 occupations. The list of 45 scientific occupations was obtained from the previous study in which US participants were asked to generate as many scientific occupations as they could [ 6 ]. After rating one scientific occupation, participants moved to the next one, until they had rated four.

First, participants rated an occupation on four social evaluation dimensions which were presented on four separate pages (the order of dimensions was randomized). The four dimensions were competence, assertiveness, morality, and warmth [ 19 ]. Each dimension was measured with five items on a 7-point (from -3 to 3) bipolar scale [ 15 , 27 ]. Examples of items for competence included pairs such as “incompetent–competent” and “unintelligent–intelligent”, and items for assertiveness included pairs such as “has no leadership skills at all–has leadership skills” and “unconfident–confident”. Morality was assessed with pairs such as “unjust–just” and “unfair–fair”, while warmth included pairs like “cold–warm” and “uncaring–caring”. Reliabilities for all four dimensions were high: Median Cronbach’s alphas were α = .92 (range .80 –.95), α = .87 (range .83 –.91), α = .93 (range .88 –.96), and α = .94 (range .93 –.96) for competence, assertiveness, morality, and warmth respectively. All items measuring each dimension, as well as their intercorrelations, are given in the S1 Fig in S1 File .

After rating an occupation on the social evaluation scales, trust was measured using the following item: “How much do you trust [occupation]?” (1 = do not trust at all to 7 = trust completely ) [ 1 ]. We opted for this approach to measure trust for several reasons. First, various large-scale research studies have used this operationalization [ 1 , 3 ], which predicts a range of behaviors[ 28 , 29 ] and allows participants to construct their own meaning of trust, rather than researchers imposing theirs. Second, a one-item measure has been shown to function well as a substitute for a multi-item measure of trust [ 30 ]. Third, our pilot studies, which included both one-item and a more specific four-item [ 31 ] measures of trust, indicate that these correlate strongly (median Pearson’s r = .74 across different occupations and pilot studies). Finally, a single-item measure is cost-effective, which was of importance given the large number of participants and occupations in the study.

Next, participants completed the influence granting task (IGT)—a novel task that we designed to measure the willingness to grant scientists influence on managing societal problems (see the S1 File for pilot studies in which we pre-tested the task). We presented participants with the following scenario:

Imagine there is a pressing problem in your country that is affecting every citizen. You have the complete power to make a decision about how to solve the problem. This problem is very complex and, therefore, to solve it, the help and advice of various types of scientists would be useful. If you were to make a final decision, how strongly would you value the input of the following parties? Note that points must sum up to 100.

Participants were then instructed to use sliders to distribute 100 points of decision power to different parties. The points had to total 100 (constant sum type of question), and participants distributed them to seven different parties which were shown in a randomized order: community leaders, politicians, citizens, friends, family, themselves, and the scientific occupation at hand. Given that we wanted to allow for comparisons of effects between different scientific occupations, we developed one scenario for all occupations. The rationale for this task was that granting influence can be understood as one of the key trusting behaviors, in that people are more willing to confer decision-making power to individuals or institutions they trust [ 23 , 32 – 34 ]. On average (across all scientific occupations), participants distributed the points in the following descending order: scientists (25.5), citizens (18.1), community leaders (16.9), themselves (16.6), friends (8.0), politicians (7.5), family (7.3).

After rating four occupations, participants were presented with an attention check question which was similar to the IGT and was phrased in the following way: “Imagine there is a pressing problem in your country that is affecting every citizen. Note that this question is an attention-check question. Please select the option myself and move it [the slider] to the maximum.” Next, participants were asked to report how attentive they were (1 = not very attentive to 5 = extremely attentive ). Failing either of the attention checks warranted exclusion (for the second question, answering “not very attentive” was considered an attention check failure). Finally, we asked participants to indicate if they knew all occupations they were asked to rate (2465 reported they knew all occupations, 315 indicated they did not). The results remained unchanged when analyses were conducted with data from only participants who reported knowing all occupations ( n = 2465). Note that testing the robustness of results after excluding participants who did not know occupations was not pre-registered.

All reported analyses were pre-registered unless stated otherwise. Before answering our research questions on the relationship between social evaluations and trust, we first calculated ratings of competence, assertiveness, morality, warmth, trust, and IGT for each occupation. Ratings were estimated from a mixed model which included a random intercept for participants because each participant rated only 4 (out of 45) occupations. The table of ratings by occupation is given in Table 1 . Overall, scientists evoked positive perceptions given that all social evaluations and trust ratings were above the mid-point of the scales (though note that political scientists and economists evoked noticeably lower ratings of morality and trust compared to other occupations).

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https://doi.org/10.1371/journal.pone.0299621.t001

As per a reviewer’s suggestion, we compared the fit of two models of social evaluations (non-preregistered analyses): one with the four-factor (the one we currently use) and one with the two-factor (agency/communion) solution. Only the four-factor solution showed good fit (CFI = 0.946, TLI = .937, RMSEA = .077, SRMR = .052, AIC = 444328, BIC = 444811), but not the two-factor one (CFI = 0.748, TLI = .717, RMSEA = .163, SRMR = .140, AIC = 483346, BIC = 483792). Comparing the models showed that the four-factor solution was significantly better ( χ 2diff(5) = 9592.5, p < .001).

Social evaluations predicting trust and influence granting

Since participants rated different occupations (ratings were nested in participants and occupations), multilevel analyses were required. Before conducting analyses, we performed mean-centering within clusters (occupations), to disaggregate between and within effects, and focused only on the latter. We also standardized all variables to facilitate the interpretation of the coefficients and enable comparing effects in predicting trust and influence granting. The correlation between the variables is given in Table 2 .

https://doi.org/10.1371/journal.pone.0299621.t002

We ran a multilevel model to investigate how social evaluations relate to trust. Because trust levels could be different for different participants and different occupations, we first ran a model with a random intercept for participants and occupations, and fixed effects for social evaluation measures. The results are given in Table 3 (left). There are several things to note. First, morality seems to play the most important role in shaping trust perceptions, followed by competence. Assertiveness and warmth also contributed, but to a smaller extent. Regarding random effects, random intercepts suggest that trust levels varied across participants and across occupations. The full random intercept model (AIC = 21329) showed better fit than the models without a random intercept for either participants or occupations (AIC = 24065, LRT(1) = 2738.3, p < .001 and AIC = 23312, LRT(1) = 1984.8, p < .001 respectively), indicating that trust levels were indeed different across participants and occupations.

https://doi.org/10.1371/journal.pone.0299621.t003

As a next step, we aimed to test whether the effect of social evaluation dimensions (competence, assertiveness, morality, and warmth) predicting trust varied by occupation. We did so by creating a model that allowed slopes for each of the social evaluation dimensions to vary across occupations. Fixed effects remained relatively unchanged, with variances of slopes being .001 for competence, .000 for assertiveness, .009 for morality, and .003 for warmth. Comparing models with and without random effects for each social evaluations dimension showed that the effects of competence and assertiveness on trust did not vary across occupations (LRTs(5) < 9.02, p s > .10), while the effect of morality (LRT(5) = 69.43, p < .001) and warmth (LRT(5) = 20.85, p < .001) did. A visual representation of the effects of social dimensions predicting trust across occupations is provided in Fig 1(A) and 1(B) . In short, results suggest that the effects of competence and assertiveness predicting trust did not vary across scientific occupations, whereas the effects of morality and warmth did.

A. The estimates (beta coefficients, with 95% confidence intervals) of competence and assertiveness predicting trust for all 45 scientific occupations. The estimates are uniform across different occupations. B. The estimates (beta coefficients, with 95% confidence intervals) of morality and warmth predicting trust for all 45 scientific occupations. The estimates vary across different occupations.

https://doi.org/10.1371/journal.pone.0299621.g001

Next, we conducted the same analysis with the IGT as the dependent variable. Again, morality and competence were found to be more important than warmth and assertiveness, although the difference between their respective importance is noticeably smaller compared to the effects predicting trust ( Table 3 , right). As with trust, model comparisons indicated that IGT levels varied across participants and occupations: A full random intercept model (AIC = 21330) showed a better fit than models without either a random intercept for participants or occupations (AIC = 30367, LRT(1) = 7049.1, p < .001 and AIC = 24182, LRT(1) = 864.6, p < .001 respectively). To investigate the random effects of social evaluation dimensions predicting IGT, we applied the same strategy as for trust. Again, fixed coefficients remained the same, with variances of slopes being .002 for competence, .002 for assertiveness, .002 for morality, and .002 for warmth. Comparing models with and without random effects for each social evaluations dimension indicated that the effects of competence (LRT(5) = 12.8, p = .03), assertiveness (LRT(5) = 17.0, p < .01), and warmth on IGT (LRT(5) = 12.5, p = .03), but not morality (LRT(5) = 10.0, p = .07) varied across occupations. Given the low variances and marginal p values, these results did not decisively show whether including random effects is warranted. We, therefore, investigated the AIC of the models when each of the random slopes was dropped. These models had either equal or higher AIC than the baseline model with no random slopes (AIC = 23271). For this reason, we opted for selecting the simpler model, i.e., without random effects. A visual representation of the effects of social evaluations predicting IGT across occupations, which is provided in the S2 and S3 Figs in S1 File , also supported this decision. In short, these analyses show that the impact of social evaluation dimensions (competence, assertiveness, morality, warmth) on influence granting did not depend on occupation, unlike what was observed for trust ratings. This suggests that, for example, perceptions of morality have the same impact on willingness to grant scientists influence, regardless of the scientific occupation in question. Note that all analyses above retained the same pattern when the morality dimension was calculated excluding the “trustworthy” adjective due to semantic overlap (fully reported in the S1 File ).

Trust as a mediator of the effect of social evaluations on influence granting

Finally, we tested if trust mediates the effect of social evaluations predicting influence granting. To do so, we conducted a multilevel mediation analysis. This analysis allowed us to test whether trust mediates the relationship on average (ignoring different occupations), and how this indirect effect varies across different occupations. The coefficients were estimated from two regression models (first: social evaluations predicting trust; second: social evaluations and trust predicting IGT) which included a random intercept for participants and occupations and fixed effects of social evaluations. The significance of indirect effects (all significant, p < .001) was tested using bootstrapping (estimating the model 1000 times). Effects averaged across occupations are given in Fig 2 . As evident from the figure, the effects of competence, assertiveness, and morality were partially mediated by trust, while warmth did not have a total effect in the first place. Mediation proportions (the ratio of the total effect that is accounted by the mediating variable) of competence, assertiveness, and morality effects were 42%, 14%, and 73% respectively. Random effects by occupation can be found in the S1 File .

The model is averaged across occupations and participants with random intercepts for both factors. Trust partially mediated the effects of competence, assertiveness and morality. Significant paths are marked with three asterisks (*** p < .001). Direct effects are given within brackets.

https://doi.org/10.1371/journal.pone.0299621.g002

We ran all the analyses above (non-preregistered) using only the big two factors–agency (calculated as an average of competence and assertiveness) and communion (calculated as an average of warmth and morality). This showed that both big factors contributed to predicting trust which mediated the effect on influence granting (S4 and S5 Figs in S1 File ). Importantly, comparing the results of analyses with two vs. four factors allowed us to discern which parts of the agency and communion contribute to trust (competence and morality) and which do not (assertiveness and warmth).

Research on trust in scientists—arguably a key prerequisite for public acceptance of science-based solutions—is limited because it routinely treats scientific occupations as homogenous. The present study is, to our knowledge, the first to systematically investigate the antecedents of trust in scientists across a wide range of science domains. More specifically, we investigated how social evaluations shape trust as well as the willingness to grant scientists influence in managing societal problems. We found that trust in scientists was relatively high, with all occupations scoring above the mid-point. However, some scientists were trusted more than others. We discovered that perceptions of competence and morality play a prominent role in shaping trust ratings, more so than perceptions of assertiveness and warmth. Importantly, whereas the effect of competence was uniform, the effect of morality varied across occupations–morality was more strongly associated with trust in occupations working on contentious, publicly debated topics (see below).

The prominent role of competence and morality in trust suggests that trust in scientists has two requirements: Although a scientist must be knowledgeable and competent, this competence must be paired with good intentions (i.e., the scientist needs to be perceived as moral). Both ingredients are necessary to build a trustworthy scientist: Scientists would not be seen as scientists if they were perceived as incompetent [ 6 , 13 , 22 ], while morality is arguably the most important predictor of trust [ 10 , 24 ]. Whereas Fiske and Dupre (2014) suggested that the perception of warmth (in terms of the two-dimensional SCM) is important for trust in scientists [ 13 ], our study advances this notion by showing that this particularly applies to morality, and not warmth. It is also noteworthy that competence (vs. assertiveness) and morality (vs. warmth) as strongest predictors are more stable and central to one’s character as they refer to perception how people are (vs. how they behave/seem) [ 27 ].

Trust in scientists is likely different from trust in other social and occupational categories. A key defining characteristic of scientists is competence [ 6 ] and much of the work that scientists do is not fully comprehensible to laypeople, who therefore will have to rely on scientists’ competence and their good intentions. However, trust in other groups might show different patterns. Indeed, research conducted within the SCM framework shows that trust in negotiators [ 35 ] and strangers [ 36 ] is determined by warmth, but not competence. Similarly, perceived morality (vs competence) is more important in cases such as group acceptance and rejection [ 37 ], and group evaluations [ 17 ]. Overall, this suggests that competence will contribute to trust when it is particularly relevant for an outcome, as is the case with scientists (e.g., discovering a drug to combat cancer depends on medical researchers’ skills and knowledge).

Importantly, our study provides evidence that not all social evaluations shape trust in the same way for different occupations. Whereas competence similarly shaped trust regardless of scientific occupation, morality did not. Why would perceptions of morality have a weaker effect on trust for some occupations, but a stronger effect for others? This might be because certain groups of scientists work on more contentious and polarized issues. For instance, some of the occupations for which morality most strongly influenced trust were those in climate science and politico-economic research. This finding aligns with the idea that many science attitudes are rooted in ideologies, identities, and other motivational factors [ 38 , 39 ]. Additionally, some branches of science involve larger moral implications, as evidenced by public discussions about various scientific topics. This certainly applies to climate science [ 40 , 41 ], nuclear physics [ 42 ], political science, and—especially since 2020—virology [ 43 ]. Whenever science is seen as especially relevant to people’s lives, the perceived morality of the scientists involved arguably matters more, which is what the current data seem to support.

It is, however, important to note two differences when using social evaluations to predict trust perceptions, as compared to predicting the Influence Granting Task. First, the effect sizes were stronger when predicting trust perceptions. Second, for trust perceptions (but not IGT), the effect of morality perceptions varied across scientific occupations. We believe these differences emerged because social evaluations more closely matched trust perceptions in that both can be seen as attitudinal measures, whereas the IGT is a more behavioral measure (behavioral willingness). Another likely reason is common-method variance: seven-point scales were used to measure social evaluations and trust perceptions, but not for responses on the IGT. Finally, in responding to the IGT, factors other than trust might have influenced the responses (e.g., certain personality traits could drive participants more towards the option “myself”; individuals that have stronger ties with family could prefer the family option, etc.).

Limitations, future research, and conclusion

Our study is not without limitations. Firstly, our measure of trust perception is short (one item) and might have seemed somewhat general to participants. Nevertheless, this approach to measuring trust is relatively common in research on trust in scientists [ 1 , 3 ] as it provides a cost-effective way to capture key perceptions. Future research could put more focus on what trust in scientists entails, as well as on finding valid ways to investigate its consequences. Similarly, the utilized influence-granting measure may have come across as somewhat artificial, as the problem was unnamed, and participants were offered to grant influence to only one type of scientist. Therefore, participants might have had more specific problems in mind (e.g., climate change, COVID-19) when responding. However, it would be very difficult to come up with particular scenarios appropriate for each scientific occupation, especially given potential confounds. By keeping the phrasing of the question identical, we avoided this problem and were able to make comparisons across different occupations. Future research might benefit from utilizing a measure gauging the consequences of trust that is further improved on ecological validity, for example by assessing real-world behavior in specific domains. Another limitation of the study is that it utilized US participants, so the generalizability of the roles of competence and morality remains to be tested. Testing whether these results apply to other countries could be one avenue for future research. Finally, given the correlational nature of our study, a fruitful next step would be to experimentally assess the (relative) impact of competence and morality on trust and its consequences across scientific occupations, which would also pave the way for potential interventions (e.g., emphasizing scientists’ good intentions in science communication).

In conclusion, the current work shows that trust in scientists varies considerably across occupations. Across 45 scientific occupations, trust was largely based on how competent and moral people perceived a scientist to be. The importance of morality was, however, not uniform across domains. For example, morality was not as important for trust in geographers as it was for trust in pharmacologists. These findings demonstrate that it is important to consider the diversity of scientific occupations when investigating trust and its contributing factors and the willingness to grant scientists influence in engaging with societal problems and policymaking.

Supporting information

S1 file. pilot studies..

https://doi.org/10.1371/journal.pone.0299621.s001

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• April 28, 2024 | New Research Offers a Totally New Viewpoint on the Ancient Avar Society That Dominated Eastern Central Europe
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New Research Offers a Totally New Viewpoint on the Ancient Avar Society That Dominated Eastern Central Europe

By Max Planck Institute for Evolutionary Anthropology April 28, 2024

Burial with a horse at the Rákóczifalva site, Hungary (8th century AD). This male individual, who died at a young age, belongs to the 2nd generation of pedigree 4, and was one of the sons of the founder of this kinship unit. Credit: Institute of Archaeological Sciences, Eötvös Loránd University Múzeum, Budapest, Hungary

Exploring the kinship, social customs, and transformations of early medieval steppe communities in Europe through ancient DNA and archaeological evidence.

The Avars, originating from Eastern Central Asia, dominated large parts of Eastern Central Europe for over two and a half centuries, from the 6th to the 9th century CE. They are perhaps not as well-known as the Huns, their less successful predecessors.

Yet in their cemeteries, they left one of the richest archaeological heritages in European history, including around 100,000 graves that have so far been excavated. From Avar funeral customs, and from written reports of their neighbors, scholars have reconstructed some of their social practices and ways of life. Yet now, archaeogenetics offers a totally new viewpoint on Avar communities who lived more than 1000 years ago. We can now analyze the ways in which individuals were related to each other up to the sixth to the tenth degree.

By combining newly generated ancient DNA data with complementary archaeological, anthropological, and historical information, a team of the multidisciplinary Synergy Grant research project HistoGenes funded by the European Research Council (ERC) has thus opened new ways to find out more about kinship patterns, social practices and population development in the distant past.

The team includes researchers from the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany, together with Hungarian, Austrian, and US research groups. In their collaboration, they set new standards by using all available methods, including the most advanced genetic and bioinformatic tools.

Studying whole communities

The historical knowledge of the Avar period populations was passed on to us by their enemies, mainly the Byzantines and the Franks, so we lack information on the internal organization of their clans. Women are particularly underrepresented in historical sources, with only three incidental mentions, so knowledge of their lives is practically non-existent. We know that some groups came to Europe from the East Asian and Pontic steppes, but to what extent, if at all, were steppe traditions maintained in Avar society if at all?

How did the newcomer groups from the East interact with each other and with the population of their new homeland in Europe? In essence, how did their way of life change over time in a completely new environment after they left the steppes and abandoned their nomadic way of life?

Gold figurine from the excavation at Rákóczifalva, Hungary. This was found using a metal detector in the territory of the Avar cemetery (7th century AD). Credit: Institute of Archaeological Sciences, Eötvös Loránd University Múzeum, Budapest, Hungary

The study was carried out as part of the ERC Synergy Grant project HistoGenes (No. 856453), by a multidisciplinary research team of geneticists, archaeologists, anthropologists, and historians, including researchers from the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany, the Institute of Archaeological Sciences and Department of Biological Anthropology at Eötvös Loránd University (ELTE), Institute of Archaeogenomics, HUN-REN Research Centre for the Humanities, Budapest, Hungary, the Curt Engelhorn Center for Archaeometry in Mannheim, Germany, the Institute for Austrian Historical Research of the University of Vienna, Austria, the Institute for Advanced Study in Princeton, USA, and others. Contrary to common practice in ancient DNA research, the team aimed to study whole communities and therefore focused on sampling all available human remains from four fully excavated Avar period cemeteries.

Thanks to exceptional ancient DNA preservation, they were able to analyze a total of 424 individuals and discovered that around 300 had a close (1 st and 2 nd degree) relative buried in the same cemetery. This allowed the reconstruction of several extensive pedigrees, the largest of which is nine generations deep and spans about 250 years.

Community dynamics

The researchers were able to identify communities that practiced a strict patrilineal descent system, where patrilocality (male individuals staying in the community after marriage) and female exogamy (female individuals moving to their partner’s community after marriage) were the norm. Communities were locally centered around a main patriline, and were related to each other through the systematic practice of female exogamy.

Zuzana Hofmanová, senior author of the study says: “In a way, this pattern shows the role of females in promoting the cohesion of this society, it was the role of females that connected the individual communities”. Multiple reproductive partners were common. Several independent cases show that these communities practiced so-called levirate unions. This practice involves related male individuals (siblings or father and son) having offspring with the same female individual.

Excavation works conducted by the Eötvös Loránd University at the Avar-period (6th-9th century AD) cemetery of Rákóczifalva, Hungary, in 2006. Credit: Institute of Archaeological Sciences, Eötvös Loránd University Múzeum, Budapest, Hungary

Guido Alberto Gnecchi-Ruscone, first author of the study, adds: ”These practices, together with the absence of genetic consanguinity, indicate that the society maintained a detailed memory of its ancestry and knew who its biological relatives were over generations.”

These social practices are consistent with evidence from historical sources and anthropological research on Eurasian Steppe societies. Thanks to the high resolution provided by the extensive pedigrees and whole-cemetery data, the researchers were also able to identify a clear temporal transition within one of the sites analyzed. This was revealed by the shift from one patriline to another and by changes in patterns of distant relatedness (the network of genetic relatedness, i.e. the IBD-network).

Zsófia Rácz, co-first author of the study, says: “This community replacement reflects both an archaeological and dietary shift that we discovered within the site itself, but also a large-scale archaeological transition that occurred throughout the Carpathian Basin.” This change, probably related to political changes in the region, was not accompanied by a change in ancestry and would therefore have been invisible without the study of whole communities. This finding highlights how genetic continuity at the level of ancestry can still conceal replacements of whole communities, and has important implications for future studies comparing genetic ancestry and archaeological shifts.

Reference: “Network of large pedigrees reveals social practices of Avar communities” by Guido Alberto Gnecchi-Ruscone, Zsófia Rácz, Levente Samu, Tamás Szeniczey, Norbert Faragó, Corina Knipper, Ronny Friedrich, Denisa Zlámalová, Luca Traverso, Salvatore Liccardo, Sandra Wabnitz, Divyaratan Popli, Ke Wang, Rita Radzeviciute, Bence Gulyás, István Koncz, Csilla Balogh, Gabriella M. Lezsák, Viktor Mácsai, Magdalena M. E. Bunbury, Olga Spekker, Petrus le Roux, Anna Szécsényi-Nagy, Balázs Gusztáv Mende, Heidi Colleran, Tamás Hajdu, Patrick Geary, Walter Pohl, Tivadar Vida, Johannes Krause and Zuzana Hofmanová, 24 April 2024, Nature . DOI: 10.1038/s41586-024-07312-4

This research project has been funded by the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation program (Grant Agreement No. 856453 ERC-2019-SyG HistoGenes). HistoGenes is a research framework investigating the period of 400 to 900 CE in the Carpathian Basin from an interdisciplinary perspective.

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TCPS2 - Chapter 9: Research Involving the First Nations, Inuit and Métis Peoples of Canada

This chapter on research involving Aboriginal peoples in Canada, including Indian (First Nations), Inuit and Métis peoples, marks a step toward establishing an ethical space for dialogue on common interests and points of difference between researchers and Aboriginal communities engaged in research.

First Nations, Inuit and Métis communities have unique histories, cultures and traditions. They also share some core values such as reciprocity – the obligation to give something back in return for gifts received – which they advance as the necessary basis for relationships that can benefit both Aboriginal and research communities.

Research involving Aboriginal peoples in Canada has been defined and carried out primarily by non-Aboriginal researchers. The approaches used have not generally reflected Aboriginal world views, and the research has not necessarily benefited Aboriginal peoples or communities. As a result, Aboriginal peoples continue to regard research, particularly research originating outside their communities, with a certain apprehension or mistrust.

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April 25, 2024

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How much trust do people have in different types of scientists?

by University of Amsterdam

Understanding why some people trust some scientists more than others is a key factor in solving social problems with science. But little was known about the trust levels across the diverse range of scientific fields and perspectives.

Recognizing this gap, researchers from the University of Amsterdam investigated trust in scientists across 45 fields. They found that, in general, people do trust scientists, but the level of trust varies greatly depending on the scientist's field, with political scientists and economists being trusted the least. The study is published in the journal PLOS ONE .

Scientists are on the front lines of tackling some of the world's biggest challenges, from climate change and biodiversity loss to pandemics and social inequalities . With these pressing issues at hand, there is a growing expectation that scientists will actively participate in shaping policies that affect us all.

At the same time, concerns have risen about people's trust in scientists, as not everyone has enough faith in scientists to use their ideas to solve the pressing issues. This lack of trust poses a significant barrier to the implementation of scientific solutions.

From agronomists to zoologists

In their study, involving 2,780 participants from the United States, social psychologists from the University of Amsterdam (led by Ph.D. candidate Vukašin Gligorić) shed light on the factors shaping trust in 45 different types of scientists, from agronomists to zoologists. According to the authors, no other study has yet investigated the trust in such a large number of scientists.

Participants were quizzed on how they see scientists with regard to:

• Competence: how clever and intelligent they consider scientists
• Assertiveness: how confident and assertive
• Morality: how just and fair
• Warmth: how friendly and caring

Participants also completed a newly developed Influence Granting Task. This task presented participants with a complex problem and asked them to allocate decision power to different parties like citizens and friends, with one party always including one group of scientists.

Gligorić and colleagues discovered that, overall, people tended to trust scientists. Trust levels, however, varied considerably depending on the scientist's field of study. For example, on a 7-point scale, with 7 being most trusted and 1 least, political scientists and economists scored a 3.71 and 4.28, respectively, while neuroscientists and marine biologists enjoyed the highest levels of trust, with scores of 5.53 and 5.54, respectively.

Competence and morality

The authors also conclude that there are two major factors that drive trust: perceptions of competence and morality. When people viewed scientists as competent and morally upright, they were more likely to trust them and were then willing to let scientists have a say in solving society's problems.

Interestingly, the importance of morality in shaping trust varied across different scientific fields. Morality mattered most when it came to trusting scientists working on controversial topics like climate change or social issues, but less so for other scientists such as geographers or archaeologists.

The diversity of scientific fields must be taken into account

The authors say that their study is not only important for understanding how trust in scientists is shaped, but also for understanding what makes people look for scientists' input in policymaking.

"This study is just the beginning," says Gligorić. "Future research should explore the generalizability of these findings beyond the U.S. context and delve into the causal relationships between trust and other variables.

"Nevertheless, one thing is clear: the diversity of scientific fields must be taken into account to more precisely map trust, which is important for understanding how scientific solutions can best find their way to policy."

Journal information: PLoS ONE

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Is scientific discovery driven by great individuals or by great teams?

Professeur Associé en Stratégie et Politique d'Entreprise, HEC Paris Business School

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Professor, Strategy and Entrepreneurship PhD Program Director, University of Colorado Boulder

Professor of Public Policy and Management at the Watts College of Public Service and Community Solutions, Arizona State University

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“This isn’t mine; this is one for the team,” said Succession star Kieran Culkin as he accepted the Best Actor award at this year’s Golden Globes. It’s a familiar aspect of Hollywood awards speeches – a reminder that the stars dazzling us on screen could not exist without the people who support them. “It’s been said, but it’s a team effort, this show,” said Succession creator Jesse Armstrong at the awards, underlining the same sentiment.

Hollywood speeches aside, we do seem to focus on individuals when we acknowledge greatness. In business and science, the dominant cultural narrative is that the bulk of innovation is driven by a handful of exceptional individuals, or “stars.” We elevate pioneers like Steve Jobs or Albert Einstein, and reward individuals who show similar promise with resources that allow them to continue performing high-value work.

Star scientists are those who publish significantly more than their peers, producing papers with greater impact and actively participating in commercialisation ventures. However, science is rarely a solo effort. Even star scientists usually have a team ¬– a “constellation” – of collaborators behind them. Research teams have grown in size by 50% in the period between 1981 and 1999 . In recent years, more than 80% of all science and engineering publications and over two-thirds of patents have been the product of multiple authors . Research collaborations that include star researchers typically achieve higher average performance than those without such individuals.

But what is the maximum impact that a single person can have on the joint performance of a collaboration? We examined the relative contributions individuals and their collaborators make to scientific innovation to understand how to optimize team composition to best perform.

How star researchers improve collective performance

Star researchers improve collective performance in two ways. First, the presence and contributions of the star researcher improve the quality and output of their collaborators, leading to greater overall team success. Previous approaches have studied this so-called spillover effect by examining what happens when a star scientist leaves the group. These studies showed that when this happened, colleagues experienced a lasting 5-10% decline in publication rate.

Second, once a researcher has initial success, they find it increasingly easy to attract talent and resources. This is called the “Matthew effect,” named after a (loose) interpretation of a Biblical parable .

In practice, the Matthew effect reflects a feedback loop wherein star researchers can increase their success at a greater rate than their peers. It has been borne out by studies showing that star scientists gain preferential access to valuable resources like funding, talented graduate students, and advanced lab facilities in both in academia and in the private sector.

30 star scientists and their constellations

Prior research has treated spillover and the Matthew effect separately, but they are inextricably linked. So, we developed a model to capture this complexity.

We investigated the star-constellation relationship in collaborations that resulted in an invention. University researchers must disclose new inventions to their institutions. Because the disclosure is a legal document, it’s useful for our research because it sidesteps social noise such as favours and institutional politics that may skew rates of publication authorship. The data was taken from a U.S. university with a renowned medical school.

Analysis was performed using data on the 555 invention disclosures that were registered between 1988 and 1999. From the total cohort of 1003 scientists, of which 248 were team leaders, we identified a cohort of 30 “stars” who were in the top 5% of globally cited researchers.

Irreplaceable stars

The contribution of a star scientist to a team is dominant - i.e. their contribution exceeds that of their team – when they are “irreplaceable”. This means that they are so well-matched to the rest of the team that the constellation would be unable to produce work of the same standard without them, even with a new leader.

What makes a leader “well matched” to their team? We looked for trends in the dataset, considered the research impact, knowledge profile, and the range of seniorities in the group, so we could determine what matters the most when scientists choose collaborators.

We found that high-value team leaders tend to work with high-value collaborators, supporting the theory that star scientists attract talented constellations. Further, prominent leaders have access to, and are preferred by, collaborators with whom they share some expertise overlap, though a very high similarity makes the collaboration less favourable. Some common language and goals are a strength, but too much overlap in expertise stifles innovation.

In addition, high-value team leaders tend to work in groups where scientists of both senior and junior ranks come together. We therefore argue that diversity of perspectives and skills enables discovery. Last but not least, star scientists and their collaborators tend to share the same research profile with respect to the application domains of their research.

Star’s surprisingly small contribution

We used these findings to investigate whether the star or constellation makes the greater contribution to scientific discovery. When a star and constellation are well-matched, they produce higher quality research. For each collaboration, we calculated whether the star or constellation would be harder to replace.

To calculate the replaceability, we replaced a star or constellation with the substitute that was the second-best match. The greater the loss in research impact, the more irreplaceable the missing star or constellation was to the research. Surprisingly, our results show that it is rare for a single person to make a more impactful contribution than their team. The relative contribution the star makes to knowledge creation surpasses the constellation’s in only 14.3% of collaborations. The constellation is the dominant party, in terms of relative value creation, in only 9.5% of cases. In more than three-quarters of cases, neither party dominates, with complementarity between star and constellation maximizing research value. In almost every pairing, innovation was a collective endeavor.

In short, to identify the drivers of innovation and discovery, we should not allow our view of the entire sky to be eclipsed by a few very bright stars.

Championing the whole team

Scientists perceived to bring star qualities are in demand and are often induced to transfer from one institution to another. This research suggests that administrators should endeavour to enable stars to move with their teams. Adjusting to work without their collaborators may have an adverse effect on the scientist’s research and their ability to attract additional talented hires. Dominating stars suffer a smaller loss without their team, but they are getting a bigger piece of a smaller pie.

However, the most significant takeaway for this research is that research credit is unfairly biased towards prominent individuals. Star scientists undoubtedly drive innovation, and a minority brings irreplaceable value. However, when considering the research output of a star, their achievements should be looked at within the context of a team. In most cases, the constellation brings a high contribution that merits recognition with IP credits, financial rents and other resources.

This article was originally published in French

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TCPS 2 (2018) – Chapter 9: Research Involving the First Nations, Inuit and Métis Peoples of Canada

Archived information.

The TCPS 2 (2022) has replaced TCPS 2 (2018) as the official human research ethics policy of the Agencies.

Archived information is provided for reference, research or recordkeeping purposes. It is not subject to the Government of Canada Web Standards and has not been altered or updated since it was archived. For previous versions of TCPS 2, please contact the Secretariat on Responsible Conduct of Research at [email protected] .

This page has been archived on the Web.

Introduction

A. key concepts and definitions, b. interpreting the ethics framework in indigenous contexts, c. applying provisions of this policy in indigenous contexts.

This chapter on research involving Indigenous peoples in Canada, including Indian (First Nations Footnote 1 ), Inuit and Métis peoples, marks a step toward establishing an ethical space for dialogue on common interests and points of difference between researchers and Indigenous communities engaged in research.

First Nations, Inuit and Métis communities have unique histories, cultures and traditions. They also share some core values such as reciprocity – the obligation to give something back in return for gifts received – which they advance as the necessary basis for relationships that can benefit both Indigenous and research communities.

Research involving Indigenous peoples in Canada has been defined and carried out primarily by non-Indigenous researchers. The approaches used have not generally reflected Indigenous world views, and the research has not necessarily benefited Indigenous peoples or communities. As a result, Indigenous peoples continue to regard research, particularly research originating outside their communities, with a certain apprehension or mistrust.

The landscape of research involving Indigenous peoples is rapidly changing. Growing numbers of First Nations, Inuit and Métis scholars are contributing to research as academics and community researchers. Communities are becoming better informed about the risks and benefits of research. Technological developments allowing rapid distribution of information are presenting both opportunities and challenges regarding the governance of information.

This chapter is designed to serve as a framework for the ethical conduct of research involving Indigenous peoples. It is offered in a spirit of respect. It is not intended to override or replace ethical guidance offered by Indigenous peoples themselves. Its purpose is to ensure, to the extent possible, that research involving Indigenous peoples is premised on respectful relationships. It also encourages collaboration and engagement between researchers and participants.

Building reciprocal, trusting relationships will take time. This chapter provides guidance, but it will require revision as it is implemented, particularly in light of the ongoing efforts of Indigenous peoples to preserve and manage their collective knowledge and information generated from their communities. The Agencies – the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council (NSERC), and the Social Sciences and Humanities Research Council (SSHRC) – are committed to the continued evolution of this Policy, as noted in the Introduction. As the Policy comes into effect, the approach of engaging communities will be applied not only to research projects but also to the further development of the Policy itself to ensure that it remains a living document.

This chapter forms an integral part of this Policy to which institutions eligible to administer and receive research funding from any of the three research agencies agree to adhere as a condition of funding. See the Agreement on the Administration of Agency Grants and Awards by Research Institutions . Footnote 2 It has drawn on prior work, both within Canada and internationally, that recognizes the interests of Indigenous peoples who participate in research and are affected by its results. Some of that work has been done by the three agencies responsible for this Policy. In particular, CIHR and its Institute of Indigenous Peoples’ Health have engaged in extensive dialogue with community partners to develop the CIHR Guidelines for Health Research Involving Aboriginal People . The CIHR Guidelines remain an important source of additional guidance for health research involving Indigenous peoples in Canada.

SSHRC and NSERC, likewise, have developed program guidelines for research involving Indigenous peoples and issues. Indigenous entities at local, regional and national levels have published and implemented principles and codes governing research practice – including ethical protections – that emphasize collective rights, interests and responsibilities.

This Policy provides guidance for research involving humans, as defined in Chapter 2 . Other guidelines specific to particular programs, research domains and community settings may elaborate on the processes set out herein, or may address ethical concerns of broader scope than those covered in this Policy. Researchers and research ethics boards (REBs) are advised to consult reference documents that apply to their research undertakings. Examples of relevant resources are listed under References at the end of this chapter.

While this chapter is designed to guide research involving First Nations, Inuit and Métis peoples of Canada, its discussion of respectful relationships, collaboration and engagement between researchers and participants may also be an important source of guidance for research involving other distinct communities. The need to respect a community’s cultural traditions, customs and codes of practice may extend beyond First Nations, Inuit and Métis communities. REBs and researchers may draw on articles of this chapter that are of relevance for the particular community involved in the research.

Neither this Policy nor this chapter are meant to reflect or introduce any change to other Government of Canada policies with respect to the issues addressed in this chapter.

The existing Indigenous and treaty rights of the Indigenous peoples of Canada, that is, the Indian, Inuit and Métis peoples of Canada, were recognized and affirmed in the Constitution Act, 1982 . Footnote 3

This chapter acknowledges the unique status of the Indigenous peoples of Canada. It interprets how the value of respect for human dignity and the core principles of Respect for Persons, Concern for Welfare, and Justice (as articulated in Chapter 1 ) apply to research involving Indigenous peoples. It accords respect to Indigenous peoples’ knowledge systems by ensuring that the various and distinct world views of First Nations, Inuit and Métis peoples are represented in planning and decision making, from the earliest stages of conception and design of projects through to the analysis and dissemination of results. It affirms respect for community customs and codes of research practice to better ensure balance in the relationship between researchers and participants, and mutual benefit in researcher-community relations.

The purpose of this chapter specifically, and the Policy in general, is to provide guidance to researchers on the ethical conduct of research involving Indigenous peoples.

The desire to conserve, reclaim and develop knowledge specific to First Nations, Inuit and Métis communities, and to benefit from contemporary applications of traditional knowledge, is a motivating force in community initiatives to assume a decisive role in research. The guidance provided in this chapter is based on the premise that engagement with community is an integral part of ethical research involving Indigenous peoples.

This Policy acknowledges the role of community in shaping the conduct of research that affects First Nations, Inuit and Métis communities. The Policy also respects the autonomy of individuals to decide whether they will participate in research in accordance with Articles 3.1 to 3.6 . Articles in this chapter give guidance for balancing individual and collective interests. In light of the diversity within and among First Nations, Inuit and Métis communities, and the ongoing development of community codes of research practice by these communities at the local, regional and national level, ethical review of a proposed project shall be attentive to the specific context of the project and the community involved ( Articles 9.8 and 9.9 ).

Definitions of key concepts used in this chapter are provided to assist in applying the guidance in this Policy (see Chapter 1 regarding the scope of definitions used in this Policy) and to facilitate dialogue between researchers and Indigenous communities. Since there is not universal agreement on the meaning of some terms, the definitions provided are intended for the purposes of this Policy only. This terminology will require periodic revision, particularly in light of the ongoing debate on the terms of art used in international and domestic contexts. This is in keeping with a commitment to the continued evolution of this Policy.

Aboriginal peoples – see Indigenous peoples.

Community – describes a group of people with a shared identity or interest that has the capacity to act or express itself as a collective. In this Policy, a community may include members from multiple cultural groups. A community may be territorial, organizational, or a community of interest. “Territorial communities” have governing bodies exercising local or regional jurisdiction (e.g., members of First Nations who reside on reserve lands). “Organizational communities” have explicit mandates and formal leadership (e.g., a regional Inuit association or a friendship centre serving an urban Indigenous community). In both territorial and organizational communities, membership is defined and the community has designated leaders. “Communities of interest” may be formed by individuals or organizations who come together for a common purpose or undertaking, such as a commitment to conserving a First Nations language. Communities of interest are informal communities whose boundaries and leadership may be fluid and less well- defined. They may exist temporarily or over the long term, within or outside of territorial or organizational communities.

An individual may belong to multiple communities, both Indigenous and non-Indigenous (e.g., as a member of a local Métis community, a graduate students’ society and a coalition in support of Indigenous rights). An individual may acknowledge being of First Nations, Inuit or Métis descent but not identify with any particular community. How individuals define which of their community relationships are most relevant will likely depend on the nature of the research project being proposed.

Community customs and codes of research practice – may be expressed in written or oral form. Consistent with the world views of particular First Nations, Inuit and Métis peoples, community customs and codes of research practice may embody kinship networks and responsibilities that include multi-generational obligations to ancestors and future generations. Ethical obligations often extend to respectful relations with plant, animal and marine life.

Community engagement – is a process that establishes an interaction between a researcher (or a research team) and the Indigenous community relevant to the research project. It signifies the intent of forming a collaborative relationship between researchers and communities, although the degree of collaboration may vary depending on the community context and the nature of the research. The engagement may take many forms including review and approval from formal leadership to conduct research in the community, joint planning with a responsible agency, commitment to a partnership formalized in a research agreement, or dialogue with an advisory group expert in the customs governing the knowledge being sought. The engagement may range from information sharing to active participation and collaboration, to empowerment and shared leadership of the research project. Communities may also choose not to engage actively in a research project, but simply to acknowledge it and register no objection to it.

First Nations, Inuit and Métis lands – include Indian reserves, Métis settlements, and lands governed under a self-government agreement or an Inuit or First Nations land claim agreement.

Indigenous knowledge – see Traditional knowledge.

Indigenous peoples – a term used in international or scholarly discourse. In the Canadian context, the term “Indigenous peoples” typically refers to persons of Indian, Inuit or Métis descent, regardless of where they reside and whether their names appear on an official register. Self-identification is a fundamental criterion for defining Indigenous peoples. Footnote 4 The term “Indigenous” does not reflect the distinctions among First Nations, Inuit and Métis peoples, who have their own histories, cultures and languages, so an attempt has been made to limit use of the term in this Policy to instances where a global term is appropriate. Indian peoples commonly identify themselves by distinct nation names such as Mi’kmaq, Dene or Haida, and as First Nations. In Canada, a comparable term, “Aboriginal peoples,” is also used in certain contexts.

Traditional knowledge – the knowledge held by First Nations, Inuit and Métis peoples, the Indigenous peoples of Canada. Traditional knowledge is specific to place, usually transmitted orally, and rooted in the experience of multiple generations. It is determined by an Indigenous community’s land, environment, region, culture and language. Traditional knowledge is usually described by Indigenous peoples as holistic, involving body, mind, feelings and spirit. Knowledge may be expressed in symbols, arts, ceremonial and everyday practices, narratives and, especially, in relationships. The word “tradition” is not necessarily synonymous with old. Traditional knowledge is held collectively by all members of a community, although some members may have particular responsibility for its transmission. It includes preserved knowledge created by, and received from, past generations and innovations and new knowledge transmitted to subsequent generations. In international or scholarly discourse, the terms “traditional knowledge” and “Indigenous knowledge” are sometimes used interchangeably.

Chapter 1 identifies three principles that express the core ethical value of respect for human dignity – Respect for Persons, Concern for Welfare, and Justice. The three core principles are interpreted in this chapter as follows:

Respect for Persons is expressed principally through the securing of free, informed and ongoing consent of participants. The concerns of First Nations, Inuit and Métis for their continuity as peoples with distinctive cultures and identities have led to the development of codes of research practice that are in keeping with their world views. Indigenous codes of research practice go beyond the scope of ethical protections for individual participants. They extend to the interconnection between humans and the natural world, and include obligations to maintain, and pass on to future generations, knowledge received from ancestors as well as innovations devised in the present generation.

Historically, the well-being of individual participants has been the focus of research ethics guidelines. In this Policy, the principle of Concern for Welfare is broader, requiring consideration of participants and prospective participants in their physical, social, economic and cultural environments, where applicable, as well as concern for the community to which participants belong. This Policy acknowledges the important role of Indigenous communities in promoting collective rights, interests and responsibilities that also serve the welfare of individuals.

Indigenous peoples are particularly concerned that research should enhance their capacity to maintain their cultures, languages and identities as First Nations, Inuit or Métis peoples, and to support their full participation in, and contributions to, Canadian society. The interpretation of Concern for Welfare in First Nations, Inuit and Métis contexts may therefore place strong emphasis on collective welfare as a complement to individual well-being.

Justice may be compromised when a serious imbalance of power prevails between the researcher and participants. Resulting harms are seldom intentional, but nonetheless real for the participants. In the case of Indigenous peoples, abuses stemming from research have included: misappropriation of sacred songs, stories and artefacts; devaluation of Indigenous peoples’ knowledge as primitive or superstitious; violation of community norms regarding the use of human tissue and remains; failure to share data and resulting benefits; and dissemination of information that has misrepresented or stigmatized entire communities.

Where the social, cultural or linguistic distance between the community and researchers from outside the community is significant, the potential for misunderstanding is likewise significant. Engagement between the community involved and researchers, initiated prior to recruiting participants and maintained over the course of the research, can enhance ethical practice and the quality of research. Taking time to establish a relationship can promote mutual trust and communication, identify mutually beneficial research goals, define appropriate research collaborations or partnerships, and ensure that the conduct of research adheres to the core principles of Respect for Persons, Concern for Welfare – which in this context includes welfare of the collective, as understood by all parties involved – and Justice.

Research Involving Indigenous Peoples in Other Countries

Although the present chapter addresses research involving Indigenous peoples in Canada, researchers, REBs, participants and the research community at large may find the guidance articulated here useful when undertaking research or reviewing a proposal involving Indigenous peoples in other countries who endorse collective decision making as a complement to individual consent. It is critically important, however, to seek local guidance in the application or adaptation of this Policy to Indigenous peoples outside of Canada.

For considerations that apply to research conducted in another country, see Chapter 8 , Section B .

Requirement of Community Engagement in Indigenous Research

Article 9.1.

Where the research is likely to affect the welfare of an Indigenous community, or communities, to which prospective participants belong, researchers shall seek engagement with the relevant community. The conditions under which engagement is required include, but are not limited to:

• research conducted on First Nations, Inuit or Métis lands;
• recruitment criteria that include Indigenous identity as a factor for the entire study or for a subgroup in the study;
• research that seeks input from participants regarding a community’s cultural heritage, artefacts, traditional knowledge or unique characteristics;
• research in which Indigenous identity or membership in an Indigenous community is used as a variable for the purpose of analysis of the research data; and
• interpretation of research results that will refer to Indigenous communities, peoples, language, history or culture.

Application

Paragraph (a) refers to First Nations, Inuit and Métis lands, which include Indian reserves, Métis settlements, and lands governed under a self-government agreement or an Inuit or First Nations land claim agreement. Researchers should become informed about formal rules or oral customs that may apply in accordance with a particular First Nations, Inuit or Métis authority. In different jurisdictions, research activities may be regulated in various ways.

Paragraph (c) refers to cultural heritage, which includes, but is not limited to, First Nations, Inuit and Métis peoples’ relations with particular territories, material objects, traditional knowledge and skills, and intangibles that are transmitted from one generation to the next (e.g., sacred narratives, customs, representations or practices). Cultural heritage is a dynamic concept in that materials, knowledge and practices are continuously adapted to the realities of current experience.

Cultural heritage research such as archaeological research involving burial sites or sacred landscapes and handling of artefacts may raise ethical obligations important to the Indigenous community that may not be addressed in academic research proposals. Researchers and communities should agree in advance on how to reconcile or address these divergent perspectives ( Articles 9.8 and 9.12 ).

Appropriation of collective knowledge, treatment of such knowledge as a commodity to be traded, or making unauthorized adaptations for commercial purposes, may cause offence or harm to communities from which the knowledge originates. Such conduct has prompted initiatives in various countries and international agencies to address unethical, unfair, and inequitable treatment of traditional knowledge and knowledge holders ( Article 9.18 ).

Paragraph (e) refers to both primary collection of research data and secondary use of information collected originally for a purpose other than the current research purpose ( Article 2.4 and Chapter 5 , Section D ). Articles 9.20 to 9.22 address community engagement and individual consent for secondary use of identifiable information and human biological materials for research purposes.

Nature and Extent of Community Engagement

Article 9.2.

The nature and extent of community engagement in a project shall be determined jointly by the researcher and the relevant community and shall be appropriate to community characteristics and the nature of the research.

Diversity among and within communities makes generalizations about the form of community engagement inappropriate. Diversity within Indigenous communities may encompass differences in levels of formal education and employment, mobility, generational differences and intermarriage with non-Indigenous persons. This diversity increases the importance of clarifying mutual expectations and obligations with the community and incorporating them into a research agreement.

Community engagement as defined in this Policy can take varied forms. In geographic and organizational communities that have local governments or formal leadership, engagement prior to the recruitment of participants would normally take the form of review and approval of a research proposal by a designated body. In less structured situations (e.g., a community of interest), a key consideration for researchers, prospective participants, and REBs is determining the nature and extent of community engagement required. In some situations, if the REB is satisfied that participants are not identified with a community or that the welfare of relevant communities is not affected, the REB may waive the requirement of a community engagement plan ( Article 9.10 ). In these cases, consent of individuals is sufficient to participate.

Communities lacking the infrastructure to support pre-research community engagement should not be deprived of opportunities to participate in guiding research affecting their welfare ( Article 9.14 ).

The following list, which is not exhaustive, provides examples to illustrate the forms of community engagement that might be appropriate for various types of research.

• Permission of the Nunavut Research Institute that carries authority to approve research in Nunavut is required. Agreement of the hamlet council in Pond Inlet will normally be a condition of approval. The local health committee may co-manage the project.
• First Nations in the district, represented by their tribal council, the local Métis association, and urban Indigenous and women’s organizations, may partner with the Prince Albert city council to sponsor, implement and use the results of the housing study.
• A committee representing First Nations, Métis organizations and urban Indigenous people whose children may be affected by the study may be convened to advise the District Board of Education and the researchers involved.
• Indigenous service agencies or political organizations may be engaged to help recruit Indigenous participants and secure community representation on an oversight committee, and to ensure cultural sensitivity in collecting and interpreting data on employment program impacts.
• First Nations, Inuit and Métis persons, whether or not they identify as members of an Indigenous community, enjoy freedom of expression, as does any citizen. They are free to consent and to participate in research projects that they consider to be of personal or social benefit. If the project is unlikely to affect the welfare of the individuals’ communities, local community engagement is not required under this Policy. The necessity or desirability of engaging regional or national representatives of Indigenous communities in policy research may, however, be determined by other considerations.
• Research that involves the collection and analysis of tissue samples from animals or plants, and not involving human research participants, is not covered within the scope of this Policy and does not require institutional REB review. However, funding program guidelines and licensing requirements in the North may impose obligations to engage communities. Community customs or codes of research practice may require securing regional and local permission and reporting findings to communities (see NSERC literature on the Northern Research Program for professors and students/fellows, and Article 9.8 ).
• Since Indigenous participation is incidental rather than scheduled, community engagement is not required. If Indigenous individuals self-identify during the collection of primary data, researchers should inquire whether culturally appropriate assistance is desired to interpret, or support compliance with, the research project. However, it should be noted that including markers of Indigenous identity in data collection may reveal anomalies that warrant further, more targeted research, which, if followed up, would require community engagement.
• Such research does not involve the collection of data from communities directly or from living persons and is not subject to REB review ( Article 2.2 ). Community engagement is not required. Findings of such research nevertheless may have an impact on the identity or heritage of persons or communities. In order to minimize any harm, researchers should seek culturally informed advice before the use of such data to determine if harms may result and if other considerations, such as sharing of the research results, should be explored with the original source community ( Article 9.15 ).

Respect for First Nations, Inuit and Métis Governing Authorities

Article 9.3.

Where a proposed research project is to be conducted on lands under the jurisdiction of a First Nations, Inuit or Métis authority, researchers shall seek the engagement of leaders of the community, except as provided under Articles 9.5 , 9.6 and 9.7 .

Research ethics review by the institutional REB and any responsible community body recognized by the First Nations, Inuit or Métis authority ( Articles 9.9 and 9.11 ) is required in advance of recruiting and seeking and obtaining consent of individuals.

Formal leaders with governance responsibilities on First Nations, Inuit or Métis land are charged with protecting the welfare of the community. Article 8.3(b) applies in such cases, requiring ethics review of research proposals by both “(i) the REB at the Canadian institution under the auspices of which the research is being conducted, and (ii) the REB or other responsible review body or bodies, if any, at the research site.” A local authority may approve research or delegate responsibility for reviewing research proposals to a local or regional body (e.g., the local health board or a body like the Mi’kmaq Ethics Watch).

Research involving multiple geographic communities raises complex issues of review and approval. Regional bodies or national organizations may facilitate research ethics review and make recommendations, but the decision to participate normally rests with the local communities.

Engagement with formal leadership is not a substitute for seeking consent from individual participants, as required by Chapter 3 .

Engagement with Organizations and Communities of Interest

Article 9.4.

For the purposes of community engagement and collaboration in research undertakings, researchers and REBs shall recognize Indigenous organizations, including First Nations, Inuit and Métis representative bodies, and service organizations and communities of interest, as communities. They shall also recognize these groups through representation of their members on ethical review and oversight of projects, where appropriate.

Organizational communities and communities of interest may exist within the boundaries of territorial communities. Overlapping interests in these cases are considered in Articles 9.5 and 9.6 . A majority of persons who self-identify as Indigenous live in rural and urban communities outside of discrete First Nations, Métis or Inuit communities. Political organizations, friendship centres, housing associations, health access centres and other groups operating in rural or urban centres have been created to enhance the welfare of their own members or the populations that they serve. Organizations and communities of interest are potential partners in research on issues relevant to their communities, and are to be recognized as communities for the purposes of community engagement under this Policy.

An organization may participate in research focusing on its members (e.g., the board and staff of a friendship centre), or it may facilitate ethical engagement with the population that it serves (e.g., the clientele of a health access centre). A community of interest (e.g., Indigenous youth who use an urban service program) may designate a local organization to provide advice and ethical protection for a project in which they participate.

Prospective participants may not necessarily recognize organizational communities or communities of interest as representing their interests. Where researchers and organizational communities or communities of interest collaborate in research (e.g., through a research agreement), prospective participants shall be informed about the extent of such collaboration (including how data will be shared) as part of the initial and ongoing consent process ( Article 3.2[i] ).

Complex Authority Structures

Article 9.5.

Researchers and REBs should not assume that approval of a project by formal leaders is the only avenue for endorsing a project. In some communities and some domains of knowledge, authority to permit and monitor research rests with knowledge keepers designated by custom rather than by election or appointment. In First Nations settings, a confederacy council spanning several communities may be recognized as having authority over its members’ traditional knowledge. In an Inuit community, the hamlet council, an Elders’ circle, and a hunters and trappers organization may have overlapping responsibility and expertise with respect to the knowledge being sought. Métis Elders dedicated to conserving Michif language may assert their autonomy from political leaders, but choose to collaborate with educational or cultural agencies (see also Article 9.15 ).

The preferred course is to secure approval for research from both formal leaders of a community and customary authority. This is especially important for outsiders to communities, whose presence or intentions might be challenged as inappropriate. Researchers should engage community processes, including the guidance of moral authorities such as Elders, to avert potential conflict. These measures should be documented to assist the REB in considering the community engagement processes proposed ( Article 9.10 ). Where no agreement exists between formal community leadership and customary authority regarding the conduct of the proposed research, researchers should inform the REB. When alternative community engagement processes are followed to endorse a project, all other ethical safeguards set out in this chapter remain applicable.

Recognizing Diverse Interests within Communities

Article 9.6.

In engaging territorial or organizational communities, researchers should ensure, to the extent possible, that they take into consideration the views of all relevant sectors – including individuals and subgroups who may not have a voice in the formal leadership. Groups or individuals whose circumstances make them vulnerable may need or desire special measures to ensure their safety in the context of a specific research project. Those who have been excluded from participation in the past may need special measures to ensure their inclusion in research.

Groups or individuals whose circumstances may make them vulnerable or marginalized within territorial or organizational communities should not be deprived of opportunities to participate in, and influence, research affecting their welfare. For example, people living with HIV/AIDS, impoverished youth or women who have suffered abuse may experience barriers to participation.

Gender-based analysis is being applied in First Nations, Inuit and Métis organizations and communities to promote or restore recognition of women’s responsibilities in the conduct of community life – including decision making that directly affects their welfare. The legacy of patriarchal governance structures continues to pose challenges to women’s full participation. Approaches that are attentive to cultural considerations help to ensure the equitable participation and benefit of women throughout the life cycle of a research project ( Article 4.2 ).

Research undertaken secretly or as a direct challenge to legitimate authority may increase risks to participants whose circumstances make them vulnerable, may deepen rifts within the community, and may actually impede the advancement of social justice. Strategies that have proven effective to secure the inclusion and promote the safety of diverse sectors within a community include: advocacy by moral authorities in the community; special measures to protect the identity of participants in small communities; identifying research questions that include rather than divide interest groups; or expanding the coverage of a project to multiple communities. In some cases, the risks to participants and communities involved with, or affected by, the proposed research outweigh the potential benefits likely to be gained, and the research should not be undertaken.

Critical Inquiry

Article 9.7.

Research involving Indigenous peoples that critically examines the conduct of public institutions, First Nations, Inuit and Métis governments, institutions or organizations or persons exercising authority over First Nations, Inuit or Métis individuals may be conducted ethically, notwithstanding the usual requirement of engaging community leaders.

Considerations in conducting critical inquiry are discussed more fully in Article 3.6 . As in the case of research involving groups whose circumstances make them vulnerable, or communities of interest within an Indigenous community ( Article 9.6 ), researchers undertaking critical inquiry research will need to adopt appropriate approaches to ensure that cultural norms are respected, that the safety of participants is protected, and that potential harms to the welfare of the larger community are minimized to the extent possible. Researchers may need to consult culturally relevant regional or national Indigenous organizations for guidance.

For example, the Sisters in Spirit project of the Native Women’s Association of Canada (NWAC) that was launched in 2005 for a five-year period illustrates research of a national scope that incorporated a critical dimension. The project involved interviewing families of missing and murdered First Nations, Métis or Inuit women in urban and rural settings, and on First Nations territory. It examined, among other matters, the adequacy of public institutions and services, Indigenous and non-Indigenous, to protect the women’s well-being and support families in their efforts to deal with their losses. The objective was to effect policy change and improve the safety and well-being of Indigenous women in Canada. NWAC has published its commitment to participatory research and the principles and practices that protect the privacy and well-being of participants. The project built on NWAC’s ongoing efforts to develop meaningful research relationships reflecting Indigenous ways of knowing.

Respect for Community Customs and Codes of Practice

Article 9.8.

Researchers have an obligation to become informed about, and to respect, the relevant customs and codes of research practice that apply in the particular community or communities affected by their research. Inconsistencies between community custom and this Policy should be identified and addressed in advance of initiating the research, or as they arise.

First Nations, Inuit and Métis codes of research practice derive from procedures and customs of predominantly oral cultures. While some rules may be in written form, their interpretation is dependent on experiential knowledge acquired through interactions in the community. An example is the strict limitation on making publicly available sacred knowledge that might be revealed within a trusting relationship. In academic culture, rules regarding limits on disclosure of information would reasonably be incorporated into a research proposal and should be integrated into research agreements between communities and researchers where such exists.

The absence, or perceived absence, of a formal local research code or guidelines does not relieve the researcher of the obligation to seek community engagement in order to identify local customs and codes of research practice.

First Nations, Inuit and Métis customs and codes of behaviour distinguish among knowledge that can be publicly disclosed, disclosed to a specific audience, or disclosed under certain conditions. Determination of what information may be shared, and with whom, will depend on the culture of the community involved. Any restrictions on access to, or use of, traditional or sacred knowledge shared in the course of the research project should be addressed in the research agreement.

In Indigenous communities, custom may restrict the observation, recording, or reporting of ceremonies or certain performances and require approval of appropriate individuals. Article 10.3 addresses the requirement for ethics review of research involving naturalistic and participant observational studies, and associated ethical implications, which may include infringement on consent and privacy.

Many First Nations communities across Canada have adopted an ethics code originally developed to govern practice in the First Nations Regional Longitudinal Health Survey. The code asserts ownership of, control of, access to, and possession (OCAP) of research processes affecting participant communities, and the resulting data. OCAP addresses issues of privacy, intellectual property, data custody and secondary use of data, which are also covered later in this chapter.

Inuit communities and organizations are considering addressing similar concerns, including adoption or adaptation of OCAP. For example, possession agreements, which are distinct from research agreements, are set out in a memorandum of understanding between the researcher’s institution and the community (usually represented by the land claim organization). The possession agreement covers the control and use of data and human biological materials collected over the course of the research. The agreement may continue to exist long after the research is completed, to allow control and use of data and human biological materials for Inuit-initiated research.

Researchers should consult their own institutions to ensure that the application of OCAP or other community-based ethics codes is consistent with institutional policies. Where divergences exist, they should be addressed and resolved prior to the commencement of the research.

First Nations, Inuit and Métis scholars attached to academic institutions as faculty members, students or research associates are increasingly engaged in research involving their own communities, and sometimes their own family members. They are generally exempt from restrictions on physical access to territory or personal access to community members. However, as members of institutions that adhere to this Policy, they are subject to the ethical duty to respect community customs and codes of research practice when conducting research in their own local or cultural communities, and to engage the relevant community as required by this Policy. In these cases, institutional REBs may be concerned about researchers being in a conflict of interest and should manage the conflict of interest in accordance with Articles 7.2 and 7.4 .

Life history and language research are examples of research areas where insider relationships and cultural competencies provide unique opportunities to extend the boundaries of knowledge. Although it can be argued that recording the life history of an elderly relative is a family matter rather than a community matter, when undertaken as research, community engagement is important to ensure that the following considerations are reviewed: the potential impact of such research on the wider community; conflicts between the individualist norms of the academic environment and the norms of the community; and the possibility of unclear or mistaken assumptions on the part of participant and researcher. During the consent process, researchers should give the participant the opportunity to identify the relevant form of community engagement, and at what stage such engagement should occur. This may include engaging with extended family members, peers of the participant with whom the researcher’s interpretations can be validated, or Elders knowledgeable about cultural rules governing disclosure of privileged information.

Institutional Research Ethics Review Required

Article 9.9.

Research ethics review by community REBs or other responsible bodies at the research site will not be a substitute for research ethics review by institutional REBs and will not exempt researchers affiliated with an institution from seeking REB approval at their institution, subject to Article 8.1 . Prospective research and secondary use of data and human biological materials for research purposes is subject to research ethics review.

Applying this Policy in a way that accommodates the diversity of First Nations, Inuit and Métis cultures and mixed Indigenous communities in urban centres is complex. For example, the fit between institutional policies and community customs and codes of research practice may be unclear, requiring researchers to adapt conventional practice or negotiate a resolution. Consistent with Article 8.3(b) , research conducted outside the jurisdiction of the researcher’s institution shall undergo prior research ethics review by both “(i) the REB at the Canadian institution under the auspices of which the research is being conducted, and (ii) the REB or other responsible review body or bodies, if any, at the research site.”

Article 8.1 permits review models for multi-site research that do not require separate research ethics review by each site involved in a research project. In cases where the community is the direct recipient of funding and has constituted a local REB that is party to an agreement with the researcher’s institution, review by the institution’s REB may not be required.

In accordance with Article 8.4 , communication between the institutional REB and the responsible agency in the community may assist in resolving inconsistencies between institutional policy and community customs and codes of research practice. Where a community research ethics review is required in addition to the mandatory institutional REB review, reconciling differences may require resubmission to one or both review bodies.

Researchers and REBs should recognize that research ethics review by community bodies will often pursue purposes and apply criteria that differ from the provisions of this Policy. The express purpose of most Indigenous community codes of research practice is to ensure the relevance of research undertakings to community needs and priorities, and respect for First Nations, Inuit and Métis identities, cultures and knowledge systems. While community codes of practice and research agreements typically share many of the goals of institutional policies, the approaches to achieving those goals may differ significantly. It is therefore inappropriate to insist on uniformity between community practices and institutional policies. For example, when researchers seek to interview Elders willing to share their knowledge according to traditional customs of consent, REBs should not impose language and processes that may be experienced as culturally inappropriate or awkward ( Article 3.12 ).

In cases where REB review of research on topics related to Indigenous peoples or affecting Indigenous communities is regularly required, the REB membership should be modified to ensure that relevant and competent knowledge and expertise in Indigenous cultures are available within its regular complement. Indigenous scholars or members drawn from First Nations, Inuit or Métis communities may fill this role ( Article 6.4 ). For occasional review of Indigenous research that is likely to affect the welfare of a community or communities, consultation with ad hoc advisors or delegation to a specialized or multi-institutional REB may be appropriate ( Articles 6.5 and 8.1 ).

The membership of community review bodies of First Nations, Inuit or Métis communities will not necessarily duplicate the membership criteria set out in this Policy. In the context of scarce resources in community organizations, the same personnel may be involved in reviewing the ethics of a proposal and co-managing the research project. An expectation that conflicts of interest will be managed by separating research ethics review and project management functions may impose unsupportable demands on small communities. In these circumstances, researchers and participating Indigenous communities should address the ethical safeguards of the community and its members that can be best achieved in circumstances when multiple roles are assumed by the same person ( Chapter 7 and, in particular, Article 7.2 ).

Requirement to Advise the Research Ethics Board on a Plan for Community Engagement

Article 9.10.

When proposing research expected to involve First Nations, Inuit or Métis participants, researchers shall advise their REBs how they have engaged, or intend to engage, the relevant community. Alternatively, researchers may seek REB approval for an exception to the requirement for community engagement, on the basis of an acceptable rationale.

In order for REBs to consider whether the form of community engagement chosen by the researcher is appropriate, they will require evidence in the form of one or more of the following: (a) a preliminary or formal research agreement between the researcher and the responsible body at the research site; (b) a written decision or documentation of an oral decision made in a group setting to approve the proposed research or to decline further participation; and (c) a written summary of advice received from a culturally informed advisory group or ad hoc committee (e.g., an urban community of interest). Where community engagement is not being proposed, perhaps due to the nature of the research and the community context ( Articles 9.1 and 9.2 ), researchers shall provide a rationale acceptable to the REB.

Provision of a research agreement is particularly emphasized in health research funded by CIHR (see CIHR Guidelines for Health Research Involving Aboriginal People in References at the end of this chapter).

Where a researcher has an ongoing relationship with a community, a letter from formal or customary leaders in the relevant community may signal approval, and suffice to proceed with the research.

Where, under the provisions of Articles 6.11 and 10.1 , a community signals during preliminary discussions with researchers, prior to REB review, that the research may proceed but that it does not want further community engagement, researchers shall document and present to the REB the steps they took to invite and facilitate engagement by the community. See Article 9.14 on how researchers may assist in capacity building.

Although researchers shall offer the option of engagement, a community may choose to engage nominally or not at all, despite being willing to allow the research to proceed. A community may, for example, support a research project carried out independent of community influence, or without any further collaboration of the community in the actual implementation of the research, in order to use scientifically defensible results to validate a negotiating position.

Research Agreements

Article 9.11.

Where a community has formally engaged with a researcher or research team through a designated representative, the terms and undertakings of both the researcher and the community should be set out in a research agreement before participants are recruited.

Research agreements serve as a primary means of clarifying and confirming mutual expectations and, where appropriate, commitments between researchers and communities. Research agreements, where applicable, shall precede recruitment of individual participants and collection of, or access to, research data. The scope of the agreement will depend on the level of engagement that the community desires and on the availability of resources to support community participation.

At a minimum, the agreement should address the ethical protections that would apply to securing individual consent for a comparable project, and should specify any commitments regarding collective community participation and decision making, sharing of benefits and review, and updating of the agreement. Expanding on information normally provided to an individual participant ( Article 3.2 ), agreements typically set out the purpose of the research and detail mutual responsibilities in project design, data collection and management ( Article 5.3 ); analysis and interpretation; credit due to knowledge holders; protection (and non-disclosure) of restricted knowledge; sharing of benefits or royalties flowing from intellectual property where applicable; production of reports; co-authorship; dissemination of results; and a conflict resolution process. Provisions for any anticipated secondary use of the information or human biological material, and associated data collected, should also be addressed at that time, and documented in the research agreement ( Article 9.20 ). Where a community has adopted or adheres to a code of research practice, the agreement may set out responsibilities in accordance with that code and the specific requirements of the research project. In less formal circumstances, the agreement may be relatively brief, and subject to clarification as the project unfolds. The CIHR Guidelines for Health Research Involving Aboriginal People provide examples of elements that may be included in research agreements (see References at the end of this chapter).

Research agreements are increasingly being recognized by academic institutions (and the researchers associated with them) as providing reference points for research ethics review process and approval on such elements as consent, confidentiality, and access to and use of information. Agreements that specify procedures for community research ethics review, included as part of the institutional ethics application, can provide contextual information and guidance for REBs conducting initial review of applications, and continuing research ethics review throughout the project. Researchers should check with their institutions regarding signing authority for research agreements ( Article 9.18 ).

Building relationships, clarifying the goals of a project, and negotiating agreements requires substantial investment of time and resources on the part of the community and the researcher. Development and participation costs incurred by the community and the researcher should be factored into proposals to the extent possible within funding guidelines.

Community agreement that a research project may proceed is not a substitute for securing the consent of individuals recruited to participate in that project, in accordance with Chapter 3 . Consent of prospective participants shall precede collection of, or access to, data or human biological materials. Consistent with the provisions of Article 3.12 , if signed written consent is not culturally appropriate, the researcher shall inform the REB of alternative processes employed for seeking and documenting consent.

Consent shall be given in accordance with the research agreement where one exists. Where research agreements provide that community partners will have limited or full access to identifiable personal data, the consent of participants to this disclosure shall form part of the consent process. Access to confidential information provided by an individual is subject to privacy law.

Researchers should be aware of the first language of Indigenous participants, and if it is an Indigenous language, researchers should make available translation by a knowledgeable person during the consent process, and during the conduct of research in accordance with the wishes of the participant ( Article 4.1 ). Researchers should be aware of the official status of Inuit languages in Inuit regions.

Collaborative Research

Article 9.12.

As part of the community engagement process, researchers and communities should consider applying a collaborative and participatory approach as appropriate to the nature of the research, and the level of ongoing engagement desired by the community.

While community engagement is appropriate in any research that affects Indigenous communities, the nature and degree of collaboration between the researcher and the community will depend on the nature of the research, and the community context. Collaborative approaches in research with Indigenous communities are a means of facilitating mutually respectful and productive relations ( Article 9.2 ).

Collaborative research is generally understood to involve respectful relationships among colleagues, each bringing distinct expertise to a project. Collaboration often involves one of the partners taking primary responsibility for certain aspects of the research, such as addressing sensitive issues in community relations, or scientific analysis and interpretation of data.

In general, community-based research takes place at community sites. Some forms of research are community-centred in that the research focuses not only on individuals but also on the community itself and may become a project conducted by, for and with the community.

Participatory research is a systematic inquiry that includes the active involvement of those who are the subject of the research. Participatory research is usually action-oriented, where those involved in the research process collaborate to define the research project, collect and analyze the data, produce a final product and act on the results. It is based on respect, relevance, reciprocity and mutual responsibility.

Where participatory research is adopted, the terms and conditions should be set out in a research agreement ( Article 9.11 ).

Mutual Benefits in Research

Article 9.13.

Where the form of community engagement and the nature of the research make it possible, research should be relevant to community needs and priorities. The research should benefit the participating community (e.g., training, local hiring, recognition of contributors, return of results), as well as extend the boundaries of knowledge.

To benefit the participating community, a research project should be relevant to community priorities and have the potential to produce valued outcomes from the perspective of the community and its members.

Relevance and community benefit can take a number of forms depending on the type of research being conducted, and the forms of community engagement. For example, genetic research on diabetes in a First Nations community is unlikely to benefit the community in the short term, but collaboration may facilitate increased knowledge of the condition, and what changes can be made to improve health outcomes. Collaborative research can thus accommodate basic, as well as applied, research, and include short-term and long-term benefits. In another example, a community invites a researcher to collaborate in a research project about housing and homelessness in an Inuit community. Using participatory research methods and social science tools, the nature, extent and consequences of the local housing shortage are documented, enabling the community to effectively communicate its needs to non-Inuit ( Qallunaat ) authorities. Other benefits include training workshops that provide employment and transfer skills to Inuit youth involved in data collection, field experience in community-based research for university student assistants, and materials useful to other Inuit communities in subsequent research.

Collaborative research approaches provide the community with the opportunity to discuss risks and potential benefits, and to minimize risks. Where participatory research is undertaken, the research report might also formulate recommendations on how to implement interventions resulting from the research for the benefit of the participating community.

A possible outcome of collaborative research, and in particular participatory research, is increased capacity to carry out research that can more readily be conducted in Indigenous languages and oral modes. The exploration, articulation and application of knowledge specific to a community or communities are thus advanced, potentially benefiting other First Nations, Inuit or Métis communities through knowledge transfer.

Researchers should provide communities access to research data that will allow them to address pressing issues through community-generated policies, programs, and services ( Article 9.8 and the Application of Article 9.11 ). Territorial and organizational communities and communities of interest may also seek to share in the benefits of research activities, which may include direct research grants, release time for project personnel, overhead levies on shared projects and commercialization of research discoveries.

Strengthening Research Capacity

Article 9.14.

Research projects should support capacity building through enhancement of the skills of community personnel in research methods, project management, and ethical review and oversight.

Collaborative research approaches provide for reciprocal learning and for transfer of skills and knowledge between the community and the researcher. Researchers should foster education and training of community members to enhance their participation in research projects. Employing Indigenous research assistants and translators is already common practice in community-based projects. Extending skills transfer through a program of training will support collaboration with institutions, and advance the capacity of communities to initiate and implement their own research. Collaborative research can also support building capacity of the research community to conduct culturally relevant research.

Lack of engagement by communities may be due to inadequate financial or human resources. Communities vary widely in the level of human and material resources they have available to collaborate with research initiatives. Structural barriers may prevent access to, and participation in, research. For example, small, remote communities and many urban communities of interest have limited organizational resources to advise or collaborate in research. The least organizationally developed communities are the most vulnerable to exploitation. Research undertaken in these circumstances should strive to enhance capacity for participation.

Funding programs that target the development of Indigenous research and capacity building seek to generate significant research training opportunities. Funding criteria allow researchers to include in their grant applications stipends for undergraduate, master’s or doctoral students, or post-doctoral researchers, as appropriate, with priority given to Indigenous candidates. The time required to establish collaborative relationships may be difficult to accommodate in the programs of students. Mentorship by experienced researchers who introduce students to communities and monitor their ethical practice can facilitate the trust-building process and advance student progress.

Recognition of the Role of Elders and Other Knowledge Holders

Article 9.15.

Researchers should engage the community in identifying Elders or other recognized knowledge holders to participate in the design and execution of research, and the interpretation of findings in the context of cultural norms and traditional knowledge. Community advice should also be sought to determine appropriate recognition for the unique advisory role fulfilled by these persons.

Within First Nations, Inuit and Métis communities, persons with special gifts carry varied roles and responsibilities in conserving and transmitting traditional knowledge and expressions of culture. They often are fluent in their traditional language. They model respectful relationships and may conduct ceremonies, pass on oral history, and offer guidance in community affairs. Their gifts are normally refined over a lifetime. Thus, Elders who have followed a rigorous path of learning over a long period are highly respected. Younger persons may also gain recognition as gifted knowledge holders.

High regard by the community that knows the Elder or other knowledge holder is the most reliable indicator of an individual’s authority. Each community or nation has particular ways of approaching Elders or knowledge holders respectfully. In many First Nations, this involves the presentation and acceptance of tobacco to symbolize entering into a relationship. In some communities, feasting or gift-giving is appropriate.

Elders are now being recognized in research proposals and grant applications as providers of access to community networks, ethical guidance to researchers, and advice in interpreting findings in the context of traditional knowledge ( Article 9.17 ). Researchers should seek advice from the community and the Elders regarding the appropriate recognition of the contribution of Elders and knowledge holders, which may include providing honoraria, acknowledging contributions by name or, as directed, withholding the Elder’s identity in reports and publications.

Privacy and Confidentiality

Article 9.16.

Researchers and community partners shall address privacy and confidentiality for communities and individuals early on in the community engagement process. Research agreements, where they exist, shall address whether part or all of the personal information related to the research will be disclosed to community partners. Researchers shall not disclose personal information to community partners without the participant’s consent, as set out in Article 3.2(i) .

Researchers and community partners should consider early in the design of the research how community codes of research practice fit with provisions for privacy and confidentiality as set out in Chapter 5 . Where inconsistencies exist, they should be resolved in advance of starting the research. The research agreement should address how inconsistencies will be addressed if they arise over the course of the conduct of the research project.

In First Nations communities, privacy and confidentiality of identifiable personal and community information may be affected by the application of the principles of ownership, control, access and possession (OCAP). The First Nations Regional Longitudinal Health Survey administered by regional First Nations organizations has addressed balancing confidentiality and access by having communities designate a regional organization to hold data, while local authorities make decisions on who can access the data, and under what conditions. In practice, the organization that serves as data steward evaluates requests for information, and its recommendations to community authorities have considerable influence.

Whatever the nature of the research, it shall be designed to include safeguards for participant privacy and measures to protect the confidentiality of any data collected. Small Indigenous communities are characterized by dense networks of relationships. As a result, coding individual data is often not sufficient to mask identities, even when data are aggregated. Some Indigenous participants are reluctant to speak to interviewers from their own community because of privacy concerns. Communities themselves have distinguishing characteristics, which in some cases has compromised efforts to disguise the research site, and has led to the stigmatization of entire communities.

On the other hand, in some social sciences and humanities research, the significance of information is tied to the identity of the source. In these cases, individual attribution, with consent, is appropriate. When individual participants waive anonymity, researchers should ensure that this is documented (Application of Article 5.1 and Article 9.11 ). Communities partnering in research may wish to be acknowledged (e.g., in the research report) for their contribution to the research effort.

Research undertaken with participants who have suffered traumatic experiences (e.g., former residential school students) poses a risk of re-traumatizing participants. Researchers should anticipate such risks in the research design, and adhere to cultural protocols for determining participant needs and access to trauma counselling.

Privacy protections in research are evolving. Respect for, and accommodation of, First Nations, Inuit and Métis priorities on joint ownership of the products of research and maintaining access to data for community use should guide research practices – with appropriate deference to applicable federal, provincial and territorial privacy legislation.

Interpretation and Dissemination of Research Results

Article 9.17.

Researchers should afford community representatives engaged in collaborative research an opportunity to participate in the interpretation of the data and the review of research findings before the completion of the final report, and before finalizing all relevant publications resulting from the research.

Where collaborative approaches are followed, researchers should ensure continuing communications with the participating community. Territorial or organizational communities or communities of interest engaged in collaborative research may consider that their review and approval of reports and academic publications are essential to validate findings, correct any cultural inaccuracies, and maintain respect for community knowledge (which may entail limitations on its disclosure). Researchers should integrate suggestions from the community representatives in the publication. If disagreement about interpretation arises between researchers and the community and it cannot be resolved, researchers should either (a) provide the community with an opportunity to make its views known, or (b) accurately report any disagreement about the interpretation of the data in their reports or publications. This should not be construed as giving the community the right to block the publication of findings. Rather, it gives the community the opportunity to contextualize the findings.

Final reports shall be made available to the territorial or organizational community or community of interest participating in the research. Researchers and communities should clarify the extent to which research findings will require translation, plain language summaries or oral presentations to community members, in order to make the research findings accessible to the community.

An Indigenous community, and those who participated in the research, should have the option to participate in deciding how collective or individual contributions to the research project will be acknowledged and credited in the dissemination of results (e.g., acknowledgement of co-authorship in research reports or at conferences and seminars).

Intellectual Property Related to Research

Article 9.18.

In collaborative research, intellectual property rights should be discussed by researchers, communities and institutions. The assignment of rights, or the grant of licences and interests in material that may flow from the research, should be specified in a research agreement (as appropriate) before the research is conducted.

Researchers, communities and institutions should be aware that all knowledge and information is not necessarily protected under the existing law. Existing intellectual property legislation generally protects works and inventions. Strict criteria are used to define intellectual property rights. It is the joint responsibility of communities, researchers and institutions to understand and communicate what qualifies as intellectual property for the purposes of research under this Policy.

When undertaking research guided by community engagement, researchers, institutions and communities may need to first address issues regarding access to data, and the use of data for the purpose of the research or in the dissemination of research findings. Regarding access to and use of data, a research agreement may set out any limits on the disclosure of personal or privileged information (subject to applicable legal and regulatory requirements and the guidance in Chapter 5) . It might include provisions to review reports and publications regarding the research prior to publication, or limits on the release of, or access to, research results (subject to applicable laws). Provisions for any anticipated secondary use of information or human biological materials, and associated data collected, should also be addressed and documented in this agreement. It may also set out any interests, licences or assignments in copyright flowing from publications about, or based on, the research ( Articles 9.8 , 9.11 and 9.16 ).

Some knowledge collected as a result of the research may have commercial applications and lead to the development of marketable products. With respect to commercialization of results of collaborative research, researchers and communities should discuss and agree on the use, assignment or licensing of any intellectual property (e.g., any patents or copyright), resulting from the marketable product, and document mutual understandings in an agreement. If the proposed research has explicit commercial objectives, or direct or indirect links to the commercial sector, researchers and communities may want to include provisions related to anticipated commercial use in research agreements. These provisions should be clearly communicated to all parties in advance, consistent with the consent process.

Researchers should consult the research office of their institution before entering into a research agreement that includes intellectual property provisions. Researchers should also consult the program literature or policies on intellectual property and copyright adopted by the federal research agencies CIHR, NSERC and SSHRC (available on their websites) and seek legal advice where appropriate.

Collection of Human Biological Materials Involving First Nations, Inuit and/or Métis Peoples

Article 9.19.

As part of community engagement, researchers shall address and specify in the research agreement the rights and proprietary interests of individuals and communities, to the extent such exist, in human biological materials and associated data to be collected, stored and used in the course of the research.

Canadian law does not provide clear recognition of property rights in human biological materials. Researchers should be aware, however, that Indigenous people and communities may seek to maintain control over, and access to, data and human biological materials collected for research. This is in accordance with Indigenous world views about “full embodiment,” in which every part and product of the human body is sacred and cannot be alienated. Consistent with Articles 9.8 and 9.11 and Chapter 12 , researchers and communities should address and specify in the research agreement:

• the objectives for collection, use and storage of human biological materials;
• the roles and responsibilities regarding custodianship of the data and the human biological materials; and

Researchers must seek consent, in accordance with Articles 12.1 and 12.2 , from individuals who are invited to donate their biological materials.

Secondary Use of Information or Human Biological Materials Identifiable as Originating from First Nations, Inuit and/or Métis Communities or Peoples

Ongoing sensitivity about secondary use of data collected for approved purposes arises from experiences with misrepresentation of Indigenous peoples; use of data or human biological materials without appropriate engagement with the source community or consent of participants; and lack of reporting to communities on research outcomes. For example, members of Nuu-chah-nulth communities in British Columbia provided blood samples for research on rheumatic disease. They vigorously protested the use of their blood components for subsequent unauthorized genetic research. In addition, there are fears in First Nations communities that access to health data for purposes other than treatment will facilitate unauthorized government surveillance.

When seeking to undertake research involving secondary use of data identifiable as originating from a specific First Nations, Inuit and/or Métis community or segment of the Indigenous community at large, researchers shall, through community engagement as appropriate, address any potential inadvertent identification of communities, or misuse of traditional knowledge. Requirements regarding the participant’s consent for secondary use of identifiable information are addressed in Articles 9.20 and 9.21 .

Article 9.20

Secondary use of data and human biological material identifiable as originating from an Indigenous community or peoples is subject to REB review.

Researchers shall engage the community from which the data or human biological materials and associated identifiable information originate, prior to initiating secondary use where:

• secondary use has not been addressed in a research agreement and has not been authorized by the participants in their original individual consent; or
• there is no research agreement; and
• the data are not publicly available or legally accessible.

Individual consent for the secondary use of identifiable information is required unless the REB agrees that one of Articles 5.5A or Article 12.3A applies.

Where the researcher can satisfy the REB that secondary use is consistent with an existing research agreement, the REB may require that the researcher engage the community from which the data or human biological materials and associated identifiable information originate – in accordance with the terms of the research agreement. New consent from individuals for secondary use is not required where the proposed secondary use is authorized by the REB in accordance with this Policy.

Article 9.21

Where research relies only on publicly available information that is protected by law, or on information that is in the public domain with no expectation of privacy as defined in Article 2.2 , community engagement is not required. Where the information can be identified as originating from a specific community or a segment of the Indigenous community at large, seeking culturally informed advice may assist in identifying risks and potential benefits for the source community.

Research based only on publicly available information that is protected by law or on information that is in the public domain with no expectation of privacy as defined by this Policy, does not involve the collection of data from communities directly, or from living persons. As indicated in Chapter 2 , REB review for this type of research is not required. Community engagement is not required. Examples are historical or genealogical research or statistical analysis.

In these cases, researchers may not have any direct relationship with communities, but their findings may, nevertheless, have an impact on the identity or heritage of persons or communities.

In order to minimize any harm, researchers should seek culturally informed advice before the use of such data to determine if harms may result and if other considerations, such as sharing of the research results, should be explored with the original source community ( Article 9.15 ).

Where access to publicly available information that is protected by law or information that is in the public domain with no expectation of privacy leads to new research initiatives to collect additional information from identified communities or individuals, REB review is required. The provisions set out in Article 5.6 apply for new initiatives of this kind.

Article 9.22

REB review is required where the researcher seeks data linkage of two or more anonymous data sets or data associated with human biological materials and there is a reasonable prospect that this could generate information identifiable as originating from a specific Indigenous community or a segment of the Indigenous community at large.

The REB may determine that community engagement is required to seek guidance on secondary use. Articles 5.5A and 5.6 or Articles 12.3A and 12.4 may apply.

Consistent with Article 2.4 , REB review is not required for research involving only anonymous data sets or anonymous human biological materials, and associated data, that cannot be identified as originating from a specific Indigenous community or a segment of the Indigenous community at large. Community engagement is not possible given that the data or human biological materials cannot be linked to a specific Indigenous community or specific individuals. Where the researcher seeks data linkage of two or more anonymous sets of information or human biological materials, and there is a reasonable prospect that this could generate identifiable information, then REB review is required.

Aboriginal Research Ethics Initiative of the Interagency Advisory Panel on Research Ethics, Issues and Options for Revisions to the Tri-Council Policy Statement on Ethical Conduct of Research Involving Humans (TCPS): Section 6: Research Involving Aboriginal Peoples , 2008.

Canadian Institutes of Health Research, CIHR Guidelines for Health Research Involving Aboriginal People , 2007. Retrieved on June 29, 2018.

Canadian Institutes of Health Research, CIHR Best Practices for Protecting Privacy in Health Research , 2005. Retrieved on June 29, 2018.

The First Nations Information Governance Centre, Ownership, Control, Access and Possession (OCAP™): The Path to First Nations Information Governance [ PDF (484 KB) - external link ] , 2014. Retrieved on August 7, 2018.

First Nations Information Governance Centre, First Nations Regional Health Survey (RHS) . Retrieved on October 25, 2018.

Inuit Tapiriit Kanatami (ITK) and Nunavut Research Institute (NRI), Negotiating Research Relationships with Inuit Communities: A Guide for Researchers [ PDF (1.3 MB) - external link ] , 2007. Retrieved on August 7, 2018.

Nickels S, and Knotsch C. Inuit perspectives on research ethics: The work of Inuit Nipingit, Etudes Inuit Studies [ PDF (1 MB) - external link ] , Études/Inuit/Studies. 2011; 35 (1-2). Retrieved on August 2, 2018.

Royal Commission on Aboriginal Peoples, Report of the Royal Commission on Aboriginal Peoples [ PDF (1.5 MB) - external link ] , “Ethical Guidelines for Research.” Appendix E. In Volume 5, Renewal: A Twenty-Year Commitment, Ottawa: Canada Communications Group, 1996. Retrieved on August 2, 2018.

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Support for Existing Expertise: Community-focused training initiatives to improve the safety and health of Tribal buffalo herd workers

American bison, also known as buffalo, are the largest land mammal in North America and are perfectly adapted to the harsh landscape of the high plains, capable of surviving extreme winters, vast changes in temperature, drought conditions, high humidity, and many diseases that impact other hoofed mammals. In recent decades, indigenous communities across North America and organizations such as the Intertribal Buffalo Council (ITBC) have led efforts to bring the buffalo home to Tribal lands. This work is done with many goals in mind including ecological restoration, cultural and spiritual revitalization, economic growth, and food sovereignty.

However, buffalo are not domesticated and have not been bred for docility. They still exhibit their innate defensive strategies, including aggression and heightened vigilance in comparison with domesticated livestock like cattle. In flight or pursuit, buffalo can reach speeds up to 35 mph and are surprisingly agile given their large size. For these reasons, people working around buffalo are at risk for injury and exposure to zoonotic diseases, which are infections that can spread between animals and people. These risks and the growth of buffalo herding led to initial research which documented both hazards and health and safety best practices in buffalo herding . Now, a new research project seeks to build on past work and partnerships to create relevant and culturally appropriate safety and health training for buffalo herd workers.

The Central States Center for Agriculture Safety and Health (CS-CASH) at the College of Public Health in the University of Nebraska Medical Center is one of 11 regional Centers for Agricultural Safety and Health funded by the National Institute for Occupational Safety and Health. CS-CASH’s new project, “ Establishing a Community-Based Training Network to Enhance Bison Herd Workers Safety on Tribal Lands ” aims to support the people who do the hands-on work of managing Tribal buffalo herds by employing what was learned in previous work to:

 1. Continue to monitor and understand workplace injuries, working conditions, and worker safety hazards for buffalo herd workers on Tribal lands;

2. Work with indigenous buffalo herd managers to ensure educational materials and training strategies are culturally relevant and appropriate; and

3. Help develop and support an indigenous-led training and mentorship program focused on worker and herd health.

The existing community of Tribal buffalo herd managers and workers contains the world’s foremost experts in buffalo herd management, harvesting, and processing. Tribes who are establishing their own herds may need trusted guidance and support as they work to establish their own programs. What has been lacking, however, is support for expert mentorship and training for these up-and-coming programs. This project intends to help provide this support and foster collaboration between experienced and less experienced tribal groups.

Improving Health and Safety Through Collaboration and Community

Health and safety hazards for buffalo herd workers include working with aging and repurposed equipment (often designed for cattle); working in remote locations during winter months; slip, trip and fall hazards; and high stress handling techniques. For the past five years, CS-CASH and the ITBC have worked together to hold an annual roundtable event which brings together experts and learners to discuss creative solutions, facilitate resource sharing, and document concerns regarding new and existing hazards to worker safety within the community.

Tribal communities have a strong interest in the safety and logistics surrounding cultural harvests and processing. Community events serve as an opportunity for the exchange of cultural knowledge, spiritual practice, as well as supporting community food sovereignty initiatives. This is also an opportunity to refine safety practices surrounding food preparation, to sample organs for disease and parasite monitoring, and to establish practices aimed at supporting the health and safety of the herd, the herd workers, and the broader community.

As the movement to bring bison back to Tribal lands continues to grow, we continue to work with Tribal herd workers and managers, ITBC, and other collaborators to enhance training materials, training opportunities, and support for community-led mentorship. Existing materials are available on the Central States Center for Agricultural Safety and Health (CS-CASH) website . Including annual reports summarizing discussions resulting from our annual roundtable events.

Mystera Samuelson, PhD, Assistant Professor, University of Nebraska Medical Center, College of Public Health, Department of Environmental, Agricultural, and Occupational Health

Arlo Iron Cloud Sr., Porcupine, SD Community Member

Lisa Iron Cloud, Porcupine, SD Community Member

KC Elliott, MA, MPH, Epidemiologist in the NIOSH Office of Agriculture Safety and Health.

Jessica Post, University of Nebraska Medical Center, Central States Center for Agricultural Safety and Health

Risto Rautiainen, PhD, MS, Professor, University of Nebraska Medical Center, College of Public Health, Director of Central States Center for Agricultural Safety and Health

Ellen Duysen, MPH, COHC, Assistant Research Professor, University of Nebraska, College of Public Health, Central States Center for Agricultural Safety and Health

John Gibbins, DVM, MPH, Senior Veterinary Advisor, NIOSH Office of Agriculture Safety and Health

This research is done under research cooperative agreement award U54OH010162 supported by the Centers for Disease Control and Prevention National Institute for Occupational Safety and Health (CDC/NIOSH) under CDC funding opportunity RFA-OH-22-002. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.

One comment on “Support for Existing Expertise: Community-focused training initiatives to improve the safety and health of Tribal buffalo herd workers”

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I am truly amazed that this work with buffalo and the Indian nation exists. I had no idea studies and help was there to help the Indian reservations re-populate the Bison herd and take care of them. I am sure the help with managing the care and keeping the workers safe is a big step forward. I applaud DR. John Gibbins for his work on this subject.

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