Quantified Self as Personal (Citizen) Science

This post is part of Bill of Health’s symposium on Critical Studies Citizen Science in Biomedical Research. Here, drawing upon interviews with self-trackers, Nils Heyen analyzes the different types of activities that self-trackers engage in and reflects on what kind of knowledge they produce. Background on the symposium is here. You can call up all of the symposium contributions published by clicking here.

By Nils B. Heyen

Quantified Self (QS) is the name of a growing international movement of people united by mainly one thing: an interest in collecting data about their own bodies and lives in order to obtain insights into their everyday health or performance. “Self knowledge through numbers” is the movement’s slogan, and indeed QS can be seen as an emerging field of knowledge production. Less obvious is, however, what type of knowledge is actually being produced here, how this knowledge production is to be characterized and how it relates to both science and citizen science. Based on interviews with self-trackers and participant observations of QS meetups and conferences in the context of an explorative empirical study, my post briefly deals with these questions (see this book chapter for more extensive considerations). Accordingly, my intention here is not to give a comprehensive classification or interpretation of the QS movement as a cultural phenomenon, but simply to shed some light on the aspect of knowledge production and on the relationship of self-tracking and citizen science. Continue reading

Citizen Science and Precision Medicine: a Route to Democracy in Health?

This post is part of Bill of Health’s symposium on Critical Studies Citizen Science in Biomedical Research. Here, Ilaria Galasso and Giuseppe Testa share their comparative case studies of the Precision Medicine Initiative and the 100K Genomes Project, examining the kinds of citizen science pursued in precision medicine projects. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Ilaria Galasso and Giuseppe Testa

Our post investigates the participatory dimensions in health and healthcare by analysing the cutting-edge approach of precision medicine, its societal impact, its discursive framings and its (potential) contribution to further public health and civic engagement.

Precision Medicine is defined by the NIH as “a groundbreaking approach to disease prevention and treatment based on people’s individual differences in environment, genes and lifestyle”(nih.gov), aimed at “delivering the right treatments, at the right time, to the right person”(whitehouse.gov).To pursue this aim, precision medicine efforts typically work on large cohorts of people to dissect individual differences in health and disease. Thence, massive large-scale involvement of “lay” participants is a key resource of precision medicine initiatives. Continue reading

Citizen Science: Non-scientists enable sampling conditions in ocean sciences

This post is part of Bill of Health’s symposium on Critical Studies Citizen Science in Biomedical Research. In light of calls for stronger ‘crowdsourcing’ oceanic data production, Gregor Halfmann focuses in on the practices of non-professional seafarers who create scientific knowledge of the oceans as a means of shedding light on citizen science practices in medicine and science more broadly. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Gregor Halfmann

Outside of the medical sciences, the relationship between science and non-professionals has often developed in a more harmonious and less fraught manner. A consideration of ocean sciences, as an example of practices in the environmental sciences, may call attention to different conditions of and approaches to citizen science, and introduce new and potentially fruitful perspectives.

The size and adverse nature of the oceans, the variety of temporal and spatial scales relating to physical, biological, and chemical oceanic processes, and the high economic demands of operating research vessels impede the continuous production of important oceanographic data. As in other environmental sciences, oceanography has a long history of practices involving professional as well as non-professional seafarers, who create knowledge of the oceans. Yet, in light of today’s digital network technologies and the methodological simplicity of many fundamental oceanographic observations, ocean scientists have recently called for stronger “crowdsourcing” of oceanographic data production, in particular with citizen science projects (Lauro et al., 2014). A common way to characterize the involvement and contribution of people without scientific credentials in research processes is a view of participants being deployed as “collectors” of data or samples; volunteering citizens, who follow tight instructions provided by scientists, resulting in a contribution of materials and data (e.g. samples of water and organisms, reports of species sightings, water temperature data) for the scientists to interpret. Continue reading

Health in the Factory: The Historical Roots of Italian Citizen Science

This post is part of Bill of Health’s symposium on Critical Studies Citizen Science in Biomedical Research. In this post, Giulia Frezza and Mauro Capocci offer a historical look at how workers and scientists shaped a new approach to occupational and environmental health in Italy, asking if current practices of citizen science share the lineages of such radical movements. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Giulia Frezza and Mauro Capocci

The radical movement  critique of science in the turbulent decades of 1960s-70s in Italy, is a significant episode that can be useful for a critical reappraisal of contemporary definitions of the scope and the aims of Citizen Science (CS).

In those years, the deep social transformation of Italian society also involved a new perception of science and technology which emphasized that science was not neutral. Far from being a tool for workers’ empowerment, it became apparent that science and technology were ideologically determined. Trespassing the orthodox boundaries of Marxism, a group of scientists advocated a new relationship between science and society, while at the same time workers understood that they needed a new alliance with scientists in order to foster real social progress. An early result of this movement was the involvement of researchers and health professionals in the struggle for better working conditions within the factory. Through their personal experience and developing hegemonic power, workers criticized the traditional notions of risk management and health protection by actively collecting data and pointing to flaws in the existing industrial systems and the science behind them. Eventually, this activism resulted in a widespread science-based “Health in the Factory” movement. At the same time, a large number of sympathetic physicians and epidemiologists engaged in social efforts to create groups and associations that lent scientific support to activists. This proved to be of paramount importance when tragic accidents happened, such as the Seveso and Manfredonia chemical explosions that occurred within the span of a few months in 1976. Such tragedies proved instrumental for breaking “the illusory boundary” separating the factory and the outside world; the impact of what took place inside the production sites was far-reaching. Industrial accidents eventually connected local ecology, the city environment, families, citizens, scientists studying harmful substances in the lab, and society as a whole. These events were a turning point for spreading social awareness, allowing local struggles to turn into national developments, and resulting in the evolution of the public health system and regulations of risk prevention (exposure thresholds, health assessment of working conditions, prevention and management of industrial accidents). Continue reading

Citizen Science where there are no citizens: participation and exclusion in Antarctic science

This post is part of Bill of Health’s symposium on Critical Studies Citizen Science in Biomedical Research. Challenging the lay-professional divide in portrayals of citizen science, Vanessa Heggie examines a case study of an expedition to the Antarctic in the 1950s, where participants were at once researchers, research subjects, experts, and technicians. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Vanessa Heggie

The Antarctic environment poses plenty of challenges for scientists, but for those who need human participants there’s the additional problem of finding and recruiting ‘citizen scientists’.  With no indigenous residents, the residents of the Antarctic are a carefully selected population, most of whom are already doing some form of scientific work and juggling multiple identities and roles.  Radio operators take readings for meteorologists, geologists volunteer as guinea pigs for physiologists, and botanists collect rocks. There isn’t a clear divide between ‘scientist’ and ‘lay participant’; often human subjects, whether they’re collecting data or acting as human guinea-pigs, understand the principles of experimental design, and are able to give feedback about the experiment itself, not just the data generated.  At what point do citizen scientists become experimental collaborators? And who gets left out of these relationships? Continue reading

Do–It–Yourself Biology as Citizen Science: Taking Participation a Step Further

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Taking a closer look at the role of public participation in science, Rosen Bogdanov and Eduard Aibar argue that participation in DIY-biology is best understood as a collaborative experiment in technoscientific practices. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Rosen Bogdanov and Eduard Aibar

We begin our small blog contribution from the very proposition suggested by our subtitle – “taking participation a step further”. What do we mean by “a step further” and is participation inherently linear such that we can take it to another level?

Contrary to many accounts of public participation in science (especially those that aim to increase it), we don’t assume that scientific innovation will somehow speed up, or become more accountable, with more public input. Rather, recalling Michael Gibbons and Helga Nowotny’s work (2001), we argue that the production of scientific knowledge can be made more “socially robust” by including other perspectives. This, however, presents a dilemma when thinking about the case of “citizen science” as the current flagship field for public participation in science. Often, citizen science projects are presented as data-driven ventures whereby citizens are invited to participate in a specific stage, or stages, of this process, or they are framed from the start as the non-expert “public” that participates in collecting or analyzing data. Continue reading

More than Data Collectors: Valuing Data Expertise Beyond Professional Science

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Responding to controversies over the validity of patient and patient groups’ contributions to biomedical research, in this post, Sabina Leonelli turns to the environmental sciences in order to examine the construction of expertise in participatory research. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Sabina Leonelli

In the context of biomedical research, particularly following the emergence of evidence-based medicine, extensive debate surrounds the choice and evaluation of appropriate sources of evidence. Contributions from patients and patients’ groups generate substantial scientific, ethical and methodological controversies, and clinicians often regard with suspicion any dataset that is gathered by non-professionals outside controlled conditions. At the same time, the collection of health data through social media is becoming increasingly visible as a potential source of information, with defenders of precision medicine going as far as to value those strategies of data collection over traditional clinical trials. To shed some light on this situation and its potential pitfalls, it is useful to consider the experience of fields such as botany, ethology, oceanography, environmental science and ornithology, which have long relied extensively on contributions by non-professionals. With the recent emergence of “citizen science” projects, these contributions are often construed in the form of data offerings, with citizens volunteering to collect data that can be fed into scientific projects – as in the well-known cases of eBird and eOceans. Just as often, researchers conceptualise these offerings as an opportunity to get hold of data that would otherwise remain beyond their reach. Due to their location, occupation or hobbies, citizens may be able to document circumstances and events of interest to researchers, but which researchers themselves do not have the resources and personnel to identify and witness in person. Thus, citizens are positioned as precious data collectors, whose engagement with science consists in the provision of potential sources of evidence. At the same time, a line is drawn between such data collectors and professional scientists as the veritable data experts, who can direct and situate citizens’ efforts to procure the raw materials for scientific investigation. In this configuration, key questions such as what the evidence will be useful for, and whether the data will be of good enough quality to play that role, are left to the scientists in charge; and data collectors remain peripheral to the formulation and development of research projects and related knowledge claims. Continue reading

Experiential Knowledge, Public Participation, and the Challenge to the Authority of Science in the 1970s

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Below, Bruno Strasser and Dana Mahr trace the rise of experiential knowledge in the 1970s, probing the historical origins of participatory research through the examples of urban planning, women’s health, civil rights, and toxic sites in the United States. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Bruno J. Strasser & Dana Mahr

In his Social History of Truth, Steven Shapin argued that, in the 17th century, the credibility of the natural philosopher’s testimony — but not that of the drunken sailor — derived from his social status as a gentleman (Shapin 1994). By the 19th century, with the professionalisation of science, the credibility of knowledge claims came to be tied to the professional expertise of the “scientist” and to the institutions where he, or more rarely she, worked. How then, in the 21st century, did a discourse emerge granting “lay people”, “amateurs”, or “citizen scientists” — which are neither gentlemen, nor scientists, and often work from home — credibility in the co-production of scientific knowledge? There is no simple answer to this question, yet we would like to offer one in this contribution.

Three narratives have tried to explain the historical origins of current participatory research. The first looks back at the contributions of amateur naturalists in the 19th century, the second at radical scientists’ movements in the 1960s, and the third at the personal computer revolution in the 1990s (Strasser et al. 2017 – forthcoming). Here, we suggest a different narrative, focussed on the rise of “experiential knowledge” in the 1970s. In current participatory research, the challenges to the monopoly of expert knowledge — experimental and clinical — rest in part on the claim that lay people’s experience of their own bodies and environments can be reliable sources of scientific knowledge. The ability of lay people to identify changes in their bodies (PatientsLikeMe), to notice disturbances in their environment (Community Based Environmental Monitoring Network), and even to recognise subtle patterns in images of galaxies (GalaxyZoo) or to fold proteins in three dimensions (Foldit), all rest on intimate bodily experiences. It is not reason at work, but bodily perception; not objective facts, but subjective sensations; not experiment, but experience. Then how can it be considered legitimate science, knowing that the very exclusion of experiential knowledge was part of the making of modern science? By the 1970s, we suggest, in the turmoil of the counterculture, activists challenging the authority of science attempted to reclaim experiential knowledge as a legitimate source of scientific knowledge, reopening the epistemological toolbox of science. The examples of urban planning, women’s health, civil rights, and toxic sites illustrate how such a transformation might have taken place.   Continue reading

Self-reporting and participatory health platforms: Empowerment through sharing information about oneself online?

This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Here, Dana Mahr examines claims of empowerment in participatory health platforms and the implications of this for participants and biomedical research more broadly. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.

By Dana Mahr

A new social contract for health?

Since the beginning of the 21st Century, self-reported experiential knowledge of patients (alongside other data) has often been communicated and promoted as an untapped treasure for both medical research and patient empowerment (Goetz 2008). Although this portrayal lacks historical and sociological accuracy (the sharing of experience has always been part of medical practice; e.g. the process of anamnesis) it informs a prominent discourse on so-called “P4-medicine”: “prediction”, “prevention”, “participation” and “personalization” (Hood 2013). Within this coordinate system of concepts, practices of participatory self-reporting (via fitness tracking, information sharing in social health networks, etc.) are seen as steps towards a “New Social Contract for Medical Innovation” (Horne et al. 2015).

Advocates of this social contract claim that it “tackle[s] the rising tide of chronic diseases and transform[s] healthcare from a disease-oriented provision to a true health maintenance service” (Horne et al. 2015). The core element of this new social contract is the collection and use of large amounts of participatory generated data for the democratization of biomedical research. The growing variety of online participatory medicine platforms can be interpreted as part of this trend. Other relevant aspects, however, are market interests, bio-governmentality, and people’s curiosity for self-exploration, self-presentation, and the urge to compare oneself with others. This is most evident in direct-to-consumer (DTC) genetic testing. The slogan of the DTC company 23andMe is telling in this respect: “Welcome to you”. Continue reading

What is Citizen Science anyway? Introduction to the new blog symposium “Citizen Science”

We are pleased to present this symposium featuring commentary from participants in the “Critical Studies of Citizen Science in Biomedical Research” conference held on the March 2, 2017, at King’s College London. Organized by different projects concerned with citizen science in Kiel (A. Buyx) & London (B. Prainsack), Exeter (S. Leonelli), and Geneva (B. Strasser),  the event took a critical look at the role of citizen science in biomedical research in the 21st Century. Presenters from the event give us a peek into their work in the forthcoming posts, which will appear daily. 

By Barbara Prainsack, Alena Buyx, and Amelia Fiske

As many of our teachers have told us, and as we have repeated told to our students: if you have to insist that you are engaging in a “critical” analysis, then something is wrong. We should be able to assume that as social scientists, ethicists, or scholars more generally we always take a critical distance to our materials. So why did we call a meeting on citizen science in biomedicine “critical studies of”?

The reason was one of emphasis: we wanted to bring together people who were not merely cheerleaders for citizen science, offering analyses that remove friction points in the name of making citizen science even better (whatever ‘better’ might mean in this respect). Instead, we were looking for work that challenges the very assumptions portraying citizen science as novel and noteworthy, or as something particularly problematic and in need of ethical attention. We did so not because we necessarily disagree with these portrayals, but because we felt that we should pay as much attention to continuities as to discontinuities; to old practices as well as to new ones; and to offline as well as online collaboration in scientific knowledge creation. We felt that only if we explored the values and goals underpinning practices and initiatives that use the label “citizen science” can we approach the questions that matter most to us: How do these practices change the distribution of power between different actors? Who is (dis)empowered by them? Who or what gains visibility, and who or what is obscured? What new patterns of inclusion or exclusion emerge as a result? We have long been interested in the concept of solidarity and its role in biomedicine (see our new book with Cambridge University Press), and we wanted to know if some of the citizen science initiatives could be seen as emerging forms of solidaristic practice. Continue reading