Exciting work is afoot at the intersection of citizen science, health, and bioscience.
Last month, a workshop on the citizen sciences, health and environmental justice was hosted by Dr. Alice Mah and her team Dr. Thom Davies, Dr. Cynthia Wang and India Holmes at the University of Warwick. The workshop was part of a five year, ERC funded project led by Dr. Mah, “Toxic Expertise: Environmental Justice and the Global Petrochemical Industry”, that responds to calls to democratize science at the intersection of corporate social responsibility and environmental justice.
Bringing together over 30 scholars and members of the public, the workshop examined the role of citizen science in linking formal expertise and lay public concerns in matters of health and the environment. Sharing work from Kosovo, to Brazil, Ghana and beyond, presenters examined a range of topics: the nature of ‘participation’ in citizen science projects; the importance of returning data to collaborators; standards of data quality; the use of the senses in knowledge production; the category of ‘citizen’ and its meanings for participatory health research with Indigenous communities.
Citizen science has become an important paradigm of scientific knowledge production over the past three decades. Widely celebrated as a legitimizing tool, the introduction of lay publics to traditionally expert-dominated arenas has been framed as the democratization of research in science and medicine. Across the presenters, several concerns emerged which are of particular relevance for further investigation of the citizen sciences in biomedicine and health:
- The stated aspirations of many citizen science initiatives are of “open,” “accessible,” and “participant-led” participation. What constitutes ‘success’ in such initiatives?Given the pro-social motivations of many of these projects that seek to generate positive change in the realms of health, society, and science, citizen sciences offer an opportunity to reconsider how impact is measured. In our own work, we have asked if crowdsourcing is also citizen science, and inquired into the motivations of participants in the British Gut Project, exploring the territory opened by these ‘citizen-driven’ initiatives.
- What constitutes ‘participation’? Who has access to participatory methods? How does participatory science and research create change? Presenters called for greater specificity about different kinds of participation, whether weak, strong, distributed, top-down, etc., that are employed in participatory methods research. Efforts to describe and define the parameters of participation, such as in the expanding field of the citizen science of genetics, mark important points of cross-over and dialogue for those involved in the citizen sciences in the environmental/natural sciences and those in the citizen sciences of health and biomedicine.
- Who is the ‘citizen’ of citizen science? Questioning the use of ‘citizen,’ various presenters explored the political implications of the term. As Elizabeth Hoover asked in her presentation, “What does “citizen science” mean in an Indigenous community that sees themselves as citizens of their tribal nation first, and of the settler nation second?” Who is included and who is excluded when we think of the participants in participatory research as ‘citizens’?
- Data is an organizing mechanism in citizen science projects. Importantly, citizen science has been made possible by digital data revolutions. Advances in digital media, portable devices, open-source databases, and social networking have broadened both the scope and speed by which publics can contribute to knowledge production. As several presenters noted, there is a movement from sensing to data, whereby experiences, observations, symptoms, and lifestyle information are rendered legible as data. One avenue of scholarship in relation to health and biomedicine that has explored these concerns has been the governance of health databases. In light of these conversations, scholars have called for further examination of how citizen science projects translate various forms of data into new practices, research, and policy.
Check out the full program here.
This past March, different projects concerned with citizen science in Kiel (A. Buyx) & London (B. Prainsack), Exeter (S. Leonelli), and Geneva (B. Strasser), got together for a two day workshop on “Critical Studies of Citizen Science in Biomedical Research” at King’s College London to share ideas and explore the role of citizen science in biomedical research in the 21st Century.
The diversity of topics presented reflected the great range of initiatives subsumed under the heading of ‘citizen science,’ and sparked conversations around patient empowerment, lay-expert distinctions, and the social and ethical implications of lay participation in creation of scientific and medical knowledge, among others.
Presenters have compiled reflections from the workshop in a blog symposium hosted by the Harvard Law Bill of Health Blog. Posts will continue to appear over the next week – stay tuned!
New article out by Lorenzo del Savio in Bioethics (Volume 31, Number 5, 2017, pp 384–392) on the role of crowdfunding in medical research.
Abstract: Crowdfunding is increasingly common in medical research. Some critics are concerned that by adopting crowdfunding, some researchers may sidestep the established systems of review of the social and scientific value of studies (e.g. impact on disease burden, issues of justice), especially mechanisms of expert-based review. I argue firstly that such concerns are based on a misleading picture of how research value is assessed and secondly that crowdfunding may turn out to be an useful complement of extant funding systems. I start with the idea that medical knowledge is a structured and intermediate public good and explain from this perspective that funding systems as a whole, rather than any of their parts (such as expert-based reviews) ought to be considered devices for the discovery of the social and scientific value of research. If so, we should not be concerned with whether crowdfunding bypasses expert reviews, but with whether it may constitute an improvement of extant funding systems. In the second part, I speculate that crowdfunding may ameliorate, albeit limitedly, some recalcitrant failures of funding systems, such as the sponsorship of research on neglected diseases, and smooth funding adaptations for scientific transitions. If, after trial, such hypotheses turn out to be true, crowdfunding ought to be promoted.
New from Lorenzo Del Savio, Barbara Prainsack, and Alena Buyx in Genomics in Medicine, an exploration of the motivations of participants in the British Gut Project:
Purpose: The establishment of databases for research in human microbiomics is dependent on the recruitment of sufficient numbers and diversity of participants. Factors that support or impede participant recruitment in studies of this type have not yet been studied.
Methods: We report the results of a survey aimed at establishing the motivations of participants in the British Gut Project, a research project that relies on volunteers to provide samples and to help fund the project.
Results: The two most frequently reported motivations for participation were altruism and solidarity. Low education levels appeared to be a recruitment obstacle. More than half of our 151 respondents said they would participate in further citizen-science projects; 38% said they would not participate in a similar project if it was for-profit or in a project that did not release data sets in repositories accessible to scientists (30%).
Conclusions: The desire to take part in research was reported as a key motivation for participation in the British Gut Project (BGP). Such prosocial motivations can be mobilized for the establishment of large data sets for research.
See the full article at: http://www.nature.com/gim/journal/vaop/ncurrent/abs/gim2016208a.html
Alena Buyx, Lorenzo Del Savio , Barbara Prainsack, Henry Völzke recently published their article “Every Participant Is a PI. Citizen Science and Participatory Governance in Population Studies” in the International Journal of Epidemiology.
Abstract: The willingness of people to participate in population-based studies has been declining for decades and is likely to continue to do so.1,2Recently, large-scale cohort studies even had to be aborted due to poor recruitment.3 Although the use of online tools can boost recruitment in some contexts, attrition remains a big problem for such studies.4,5 This situation is deeply concerning for epidemiological research. The effects of poor recruitment and high attrition are poor statistical power and an exacerbation of selection bias, which in turn diminishes the representativeness of population-based samples. For example, the disproportionate reduction in participation of people with low socioeconomic status (SES) could have significant impact on the validity of study results, since one of the most robust findings of contemporary epidemiology…
Read the full article at: https://www.ncbi.nlm.nih.gov/labs/articles/28100583/
David Watson and Luciano Floridi have just published on Synthese an article that, to my knowledge, is the first in-depth philosophical discussion of the epistemological significance of citizen science. In the article, they build on the data log of Zooniverse to back their three theoretical claims about crowdsourced science, namely that CS is uniquely suitable to achieve the epistemic goals of reliability, scalability, connectivity, defined as:
Reliability. The designers of citizen science websites employ numerous quality control measures to ensure that user contributions are accurate and precise.
Scalability. Hundreds of thousands of volunteers from around the world regularly participate in citizen science projects, analysing unprecedented volumes of data for a wide variety of scientiﬁc studies.
Connectivity. Information and communication networks unlock the distributed knowledge of large epistemic communities by establishing numerous channels that allow users to confer with one another and direct information toward one or several central nodes.
(Watson and Floridi 2016, pg 1239)
Watson and Floridi´s argument illustrates how the technical infrastructure of a CS project orchestrate the contribution of social actors (experts, lay participants) to achieve these three goals of CS. Normative methodologists have always been interested in both instruments (e.g. measurement- or observation- instruments) and the social structuring of science (e.g division of labor, rewards and incentives). The peculiar socio-technical approach proposed by Watson and Floridi is however – they argue – novel, as it explicitly highlights the interaction between the latter (i.e. algorithms) and the former (i.e. social patterning). They believe that CS is interesting not so much as such, but as an entry point to a socio-technical perspective that could potentially be enlightening for methodologists more generally. After all, they point out, “collaboration and computation are ubiquitous across the natural sciences, and have been for decades” and “we can be conﬁdent that many of our next great discoveries will be made thanks to some complex partnership of minds and machines” (ibidem pg. 57).
Watson and Floridi conclusion endorses the thesis that the ubiquity of “partnership of minds and machines” is more than a quantitative progress in technological capabilities. It is rather a disruption that makes us re-think some deep features of our conceptual frameworks, including the ontology we employ when we attribute (epistemic) virtues, goals, agency, knowledge. The socio-technical disruption brought about by connectivity is rapidly becoming a key issue both in popular culture (from Werner Herzog´s recent Lo and Behold to… yesterday´s German crimi Tatort) and policy making (esp. labour relationships within the “gig economy” and the future of work). We have previously claimed in this blog, and from a perspective that differs from Watson and Floridi, that CS is a privileged standpoint to watch these developments. Let´s keep on watching!
The Data & It in Health and Medicine Lab (see previous post) has published an article on the emerging ethical issues regarding digitale health data. These are also issues of great relevance for citizen science projects aiming at the establishment of bio-datasets.
Link. Croatian Medical Journal
Emerging ethical issues regarding digital health data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks
Christine Aicardi, Lorenzo Del Savio, Edward S. Dove, Federica Lucivero, Niccolò Tempini, Barbara Prainsack CMJ 2016; 57: 207-13
Link. Data & It in Health and Medicine Lab
The paper “CROWDSOURCING THE HUMAN GUT. IS CROWDSOURCING ALSO ‘CITIZEN SCIENCE’?” is online!
CROWDSOURCING THE HUMAN GUT. IS CROWDSOURCING ALSO ‘CITIZEN SCIENCE’?
Lorenzo Del Savio, Barbara Prainsack, Alena Buyx
The participation of non-professionally trained people in so-called citizen science (CS) projects is a much discussed topic at the moment. Frequently, however, the contribution of citizens is limited to only a few narrow tasks. Focusing on an initiative dedicated to the study of the human microbiome, this paper describes such a case where citizen participation is limited to the provision of funding, samples, and personal data. Researchers opted for crowdsourced approaches because other forms of funding and recruitment did not seem feasible. We argue that despite the narrow understanding of participation in the context of some CS projects, they can address some of the democratic concerns related to scientific knowledge creation. For example, CS and crowdsourcing can help to foster dialogue between researchers and publics, and increase the influence of citizens on research agenda setting.
Our working paper for the Institute of Technology Assessment is online!
Del Savio, Lorenzo; Buyx, Alena; Prainsack, Barbara (2016) Opening the black box of participation in medicine and healthcare. ITA-manu:script 16-01.
ABSTRACT. This paper unpacks the notion of public and patient “participation” in medicine and healthcare. It does so by reviewing a series of papers published in the British Medical Journal, and by discussing these in the light of scholarship on participation in political and social theory. We find that appeals to public participation in this series are based on a diverse, potentially contradictory, set of values and motivations. We argue that if these diverse values and motivations are not carefully distinguished, appeals to participation can be an impediment, rather than an enhancement, to greater transparency and public accountability of health research.