The People's Science I: What is Extitutional Science?

The following is the first part of a multi-part series on the way non-professional scientists have enabled significant scientific progress in the understanding of their disease. In this part, I begin to describe the nature of their activities. In future parts, I will explain why what I call extitutional science enables scientific progress, and what this means for the way in which scientific activities ought to be organised. 

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Philosophers of science have on the whole not been very interested in the science done by people who aren’t affiliated with and/or employed by scientific institutions: what we might call non-professional or extra-academic science (Koskinen 2023: 413). But the work that has been done on this topic can be fruitfully divided into two camps.

The first have tended to theorise non-professional science, which they tend to call participatory science, as in some sense subsumed under institutional science (Dunlap et al. 2021, Evans and Potochnik 2023, Potochnik 2024). Such science, according to them, takes place on a spectrum of non-professional involvement: on one end, volunteers perform mere data collection for a professionally designed and run project;[1] and on the other end, non-professionals are “full research collaborators”, who “help ... to shape research questions, study methods, conclusions drawn, and all the other decisions made along the way” (Potochnik 2024: 51).[2] But even in the case of “full collaborat[ion]”, the emphasis is always on how “members of the participating public” (Dunlap et al. 2021: 287) can “help” (Potochnik 2024: 51) or be “included” (Potochnik 2024: 50) or “participate” (Evans and Potochnik 2023: 13) in the research that “professionally trained researchers” (Dunlap et al. 2021: 287) or “scientists conduct” (Evans and Potochnik 2023: 12). Participatory science may involve non-professional researchers to various degrees, but it takes place under the purview of institutional science: the initiative and decision-making roles belong to institutional scientists. In healthcare, participatory science is usually called public and patient involvement (PPI). The term is a broad umbrella term that regroups things as varied as the inclusion of members of the public in state decisions about healthcare priorities, to the invitation of sick people to weigh in on the design of a clinical trial (McCoy et al. 2019). 

The second way that non-professional science has been theorised by philosophers is as community science (Kovaka 2021). In community science, people without institutional affiliation come together to research a particular phenomenon that affects their community. Karen Kovaka provides the example of a community of people in an industrial area of France who showed the deleterious impact of pollution on their health (Allen 2017); other examples include women researching the contamination of food by radiation after Fukushima (Kimura 2016), and Black people investigating the contamination of their water supply in Flint, Michigan (Carrera et al. 2023, Pauli 2019). In healthcare, community science can look like groups of people investigating the effects of dietary supplements on their health (Wiggins and Wilbanks 2019). Where participatory science was subsumed under institutional science, community science is separate from it: the dialogue and engagement between community and institutional scientists is often limited, such that community scientists are oriented much more towards other members of their community and the authorities. 

Here, I want to show that these two forms of non-professional science are not jointly exhaustive: people living with HIV/AIDS, myalgic encephalomyelitis (ME), and Long COVID have been involved in scientific activities that do not fall under either of the two kinds surveyed so far.[3] They have collated, summarised, and spread the findings of institutional science on their diseases; but much more than that, they have collectively analysed, criticised, and disputed almost all of its aspects: from conceptual questions (diagnostic criteria, symptom definitions), to clinical trial methodology (eligibility criteria, control type, outcome measures, posology, statistical analysis), to research into disease pathophysiology (theory building, hypothesis generation, research methodology). In the absence of correctly run trials, they have sourced medications outside formal channels, run underground trials, performed experiments on themselves, and used the knowledge acquired in this way to demand changes to the way institutional science was producing findings on their disease. In other words, they have left no stone unturned in the collective criticism of what they have considered to be the inadequate research pursued by institutional scientists. 

These cases cannot be understood as forms of participatory science: not only have these groups of sick people on the whole not been sought out or invited to participate in institutional-run research, they have cultivated a degree of antagonism towards institutional scientists, such that the kind of scientific activity they have been engaged in is not subsumed under institutional science but, rather, external to it. But these cases cannot be understood as forms of community science either. For the independence sick people have maintained from institutional scientists is characterised not by disconnection but by sustained critical engagement. Unlike community scientists whose activities are mostly self-contained, these groups of sick people direct much of their efforts towards altering the course of institutional research. 

Lucas Dunlap et al (2021) argue that, in order to understand non-professional science, we should be asking why people engage in it. They discuss, for instance, the fun and educational aspects of participatory science for participatory scientists, and conclude that one of its benefits might be to increase public trust in science (see also Potochnik 2024). The sick people I have been writing about, by contrast, do not engage in their activities primarily because they find them interesting (though many do), but because they desperately want a safe and effective treatment that will allow them to survive and/or regain some quality of life. In a context where they see institutional science as systematically producing errors, such that no safe and effective treatment exists on the horizon, they feel compelled to make institutional science change course. The kind of science I have been describing, therefore, has two core features. Firstly, it emerges as a response to the failings of institutional science, such that these failings constitute the reason for its genesis. And secondly, it is neither subordinate to nor separate from institutional science, but characterised by sustained critical engagement with it. By virtue of these features, it can be viewed as a kind of extra-academic counterpart to institutional research, and called extitutional science. 

[1] Data collection by volunteers is known outside of STS as citizen science, but in STS, the term usually refers to what I go on to discuss as community science (Kimura and Kinchy 2016). 

[2] They adapt this spectrum from Shirk et al. (2012), and argue that it is insufficient to capture all the dimensions along which participatory research can vary. I agree that there is much to be studied besides how the work of non-professional scientists relates to institutional science, but that is what interests me here. 

[3] The activities of HIV/AIDS activists in the 1980s and early 1990s have been well-documented; see for instance Epstein (1996) and Schulman (2021). Those of people with ME or Long COVID have not yet been the subject of a thorough sociological study, possibly because they have not yet resulted in a safe and effective treatment. See this previous blog post for more details on the activities of people with ME.

Allen, Barbara. 2017. “A Successful Experiment in Participatory Science for Promoting Change in a French Industrial Region.” Engaging Science, Technology, and Society 3: 375–81. 

Carrera, Jennifer, Sarah Bailey, Ronnie Wiggins, Cynthia Watkins, Laura Sullivan, Melissa Mays, and Kent Key. 2023. “Community Science as Resistance to Neoliberal Scientific Praxis.” Environmental Justice 16 (1): 54– 61. 

Dunlap, Lucas, Amanda Corris, Melissa Jacquart, Zvi Biener, and Angela Potochnik. 2021. “Divergence of Values and Goals in Participatory Research.” Studies in History and Philosophy of Science 88: 284-291. 

Epstein, Steven. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge. University of California Press. 

Evans, Andrew and Angela Potochnik. 2023. “Theorizing Participatory Research.” In Ethical Issues in Stakeholder-Engaged Health Research, edited by Emily Anderson. Springer. 

Kimura, Aya H. 2016. Radiation Brain Moms and Citizen Scientists: The Gender Politics of Food Contamination after Fukushima. Duke University Press. 

Kimura, Aya H., and Abby Kinchy. 2016. “Citizen Science: Probing the Virtues and Contexts of Participatory Research.” Engaging Science, Technology, and Society 2: 331-361. 

Koskinen, Inkeri. 2023. “Participation and Objectivity.” Philosophy of Science 90: 413-432. 

Pauli, Benjamin J. 2019. “The Water Is (Not) Safe: Expertise, Citizen Science, and the Science Wars.” In Flint Fights Back: Environmental Justice and Democracy in the Flint Water Crisis, 179-221. MIT Press. Potochnik, Angela. 2024. Science and the Public. Cambridge University Press. 

Schulman, Sarah. 2021. Let the Record Show: A Political History of ACT UP New York, 1987–1993. Farrar, Straus and Giroux. 

Shirk, Jennifer, Heidi Ballard, Candie Wilderman, Tina Phillips, Andrea Wiggins, Rebecca Jordan, Ellen McCallie, et al. 2012. “Public Participation in Scientific Research: A Framework for Deliberate Design.” Ecology and Society 17(2): 29. 

Wiggins, Andrea and John Wilbanks. 2019. “The Rise of Citizen Science in Health and Biomedical Research.” The American Journal of Bioethics 19(8): 3-14.