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.
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.
We have been very fortunate with the contributors to our conference, as readers will see in the blog posts in this symposium. There was broad consensus that the term citizen science should not be used to explain anything, but rather as a term in need of explanation: If a person or project uses the term as a label for their own practices or projects, we should take a close look at what types of participation is involved, by whom, and for what purposes. This will prevent us from assuming that participation always empowers those who participate, and it will direct our gaze towards those who may be excluded.
We encourage everyone to read through the published and forthcoming individual contributions to this symposium to learn more about the specific arguments that were made about practices as diverse as self-reporting and self-tracking (Mahr and Heyen respectively), the historical origins of participatory research (Strasser & Mahr, and Frezza & Capocci), the problematic distinction between data ‘collectors’ and data ‘experts’ (Leonelli), about participation as a collaborative experiment in technoscience (Bogdanov & Aibar), participatory science in the Antarctic (Heggie) and on the ocean (Halfmann), and about citizen science in the context of precision medicine (Galasso & Testa). In the following section we would like to present some insights obtained from our own project on public participation in medicine and healthcare.
Let us start with the positive effects of ‘citizen science’ in biomedicine. In the first place is the widening participation enabled by ICT and digital and social media. It is important to remember that the ICT revolution and the proliferation of digital social media do not mark the beginning of citizen science in biomedicine. Instead they mostly help patients and others to do things that they have already been doing, only more effectively, such as: connect to others with similar experiences; give and receive support; exchange information; keep diaries on functional changes, etc. Nevertheless, new ICT tools and digital media have rapidly and drastically increased the range of people who can participate in data collection and, where appropriate, data analysis and other tasks. Because large numbers of people can be reached in real time and at virtually no marginal cost, new ICT provides unique ways to find specialist problem solvers that are not part of established communities. Importantly, participatory web-based tools can improve services in remote or under resourced areas or contexts. Crowdsourcing tools are already heavily used in global health contexts (see here and here, for example).
In second place is the emancipatory effect of crowdsourcing. The use of crowdfunding enables initiatives that would stand no chance of receiving traditional research funding. The British Gut project is an example of this: ‘Citizen scientists’ volunteer a sample and donate the money for analysis. While not all such projects may be good value for money, and some may be problematic, crowdfunding can help to bring positive change that would otherwise not be possible, including the emancipatory effect of moving decisions on what research is valuable out of the hands of established funders and institutions. ..
Moving on to the less sanguine parts of our analysis: The flip side of the participation effect is that it is tempting to assume that widening participation alone makes medicine and science more democratic. Astra Taylor, Evgeny Morozov, and other authors have demonstrated in their work that formally equal access to digital technologies does not as such enhance democracy. It is often those who are already powerful who can make the most effective use of these technologies. In the biomedical field, web-based services such CureTogether give the illusion of being egalitarian and open to everybody; but what they do is increase data capture from selected groups of people who are using the platform. The ‘population’ that users compare themselves to is not a nation or a group who uses the same healthcare provider, but the select group of fellow platform users.
Another development that we have observed is that ‘citizen science’ can be expected to fill the gap left by the retreat of public actors. When public funding for science and research is declining, then enthusiasm for volunteer contributions to scientific knowledge creation comes in handy. Crowdfunding is a variant of this. Moreover, as Hauke Riesch and colleagues have observed – albeit in a case study outside the field of biomedicine – some professional scientists worry that their work could partially be taken over by unpaid ‘citizen scientists’ in the near future.
Our final observation is about ethics in and of ‘citizen science’. In contrast to the radical science movement of the 1960 and 1970 that foregrounded the question of how science is part of national, colonial, economic, and political projects, ethical discussions of contemporary citizen science focus largely on research ethics. Sometimes the suggestion is that ethical considerations are best addressed by crowdsourcing ethics reviews. This is problematic as we lose sight of some of the questions that matter most to our societies: Questions about the distribution of resources and power, about transparency and accountability, and about social and global justice and solidarity.