Exploring citizen science, health, and bioscience: An international workshop

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,” “participant-led,” “citizen-driven” 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.
  • 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.
  • 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, lifestyle information are rendered legible as data. In light of this, scholars 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.

What is Citizen Science anyway? Check out the new blog symposium “Citizen Science”

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!

Article: Motivations of participants in the citizen science of microbiomics: data from the British Gut Project

New from Lorenzo Del SavioBarbara Prainsack, and  Alena Buyx in Genomics in Medicine, an exploration of the motivations of participants in the British Gut Project:

Abstract: 

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

Now out: Every Participant Is a PI. Citizen Science and Participatory Governance in Population Studies

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/

Citizen science as socio-technical system

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:

  1. Reliability. The designers of citizen science websites employ numerous quality control measures to ensure that user contributions are accurate and precise.

  2. 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.

  3. 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!

Biomedical sharing economies

On the 3rd of September, together with Mauro Turrini (Paris 1), we organised a session at the 4S/EASST conference in Barcelona discussing biomedical data sharing platforms and their place in the economy (see below the abstracts).
Many thanks to all speakers and participants!
Biomedical sharing economies
Convenors
  • Lorenzo Del Savio (Christian-Albrechts-Universität zu Kiel)
  • Mauro Turrini (Université de Paris 1)

 

Short Abstract

Empirical and theoretical perspectives on biomedical data sharing platforms, their participatory strategies and how they affect power and inclusion in biomedical research and health care.

Long Abstract

Digital technologies are reducing the cost of production and sharing of bio-data, stimulating new approaches to healthcare and biomedical research. On one hand, personal data may be adopted as a means to devise more precise strategies to diagnose, prevent, and treat diseases, even bypassing the medical mediation. On the other, non-professional citizens are recruited for research tasks such as data and sample collection, data coding, and problem solving in data-intensive large scale biomedical projects. An increasing number of crowdsourcing internet platforms aggregate participants to generate biomedical datasets. They often frame “lay” participation in terms of patient empowerment, healthy citizenship, research activism, or altruistic sharing, in line with other forms of contemporary sociality. Some of these platforms embody new forms of valorisation that put at work patients and healthy volunteers. This track session explores issues of patient empowerment, biodata ownership, privacy and control in these biomedical sharing economies. The aim is to expound their potential for making healthcare and biomedical research more inclusive, broadening healthcare and scientific citizenship as well as their capacity of furthering exclusion and creating new hierarchies and forms of exploitation. We seek papers that address questions pertaining expectations, motivations and experiences of the relevant actors, as well as more theoretical papers engaging with the political economy of these platforms.

Papers

 

Introduction. Biomedical sharing economies

Author: Mauro Turrini (Université de Paris 1) ; Lorenzo Del Savio (Christian-Albrechts-Universität zu Kiel)

Short Abstract

Biomedical sharing economies: introductory remarks (with Lorenzo Del Savio). Empirical and theoretical perspectives on biomedical data sharing platforms.

Long Abstract

Digital technologies are reducing the cost of production and sharing of bio-data, thereby stimulating new approaches to healthcare and biomedical research. An increasing number of crowdsourcing internet platforms aggregate participants to generate biomedical datasets. They often frame “lay” participation in terms of patient empowerment, healthy citizenship, research activism, or altruistic sharing. This in line with other forms of contemporary sociality, e.g. social media. Personal data may be adopted as a means to devise more precise strategies to diagnose, prevent, and treat diseases, even bypassing the medical mediation. Also, non-professional citizens are recruited for research tasks such as data and sample collection, data coding, and problem solving in data-intensive large scale biomedical projects.

A number of critical theories have been proposed to analyse these emerging biomedical sharing economies. We present theories of biolabour and theories of artificial scarcity, and discuss how they enlighten controversial features of such economies. We aim to reflect on how data sharing initiatives may make healthcare and biomedical research more inclusive, broadening healthcare and scientific citizenship but may also further exclusion and create new hierarchies and forms of exploitation.

 

Ethical issues in the Googlization of medical research. From data philanthropy to new power asymmetries

Author: Tamar Sharon (Maastricht University)

Short Abstract

Companies like Apple and Google have recently entered the medical research space. This talk argues that the disconnect between the logics of philanthropy and commercial interest at work in the Googlization of medical research have implications for both research ethics and issues of social justice.

Long Abstract

Following the announcement of a partnership between IBM and Apple last year to put health data from Apple Watches into the hands of doctors and researchers, Michael Rodin, senior vice-president of IBM Watson, stated that: “the generation who buy Apple Watches are interested in data philanthropy”. This agreement is just one example of the new collaborations between the health and technology sectors that promise to revolutionize medical research, and that are forming around the launch of platforms and services like the Apple ResearchKit, the Google Baseline Study or Google Genomics. As Rodin’s proclamation implies, this revolution is predicated on the philanthropic disposition of digitally engaged prosumers. But how does the logic of the philanthropy of data generators and of data sets as a public good clash with the revenue generating practices of the companies that are driving what we might call the Googlization of medical research? How do the methods for collecting, storing and analyzing data in new models of digitally empowered research introduce new biases? And how may the emergence of new power asymmetries in this space shape future research agendas? This talk argues that the disconnect between the two logics of philanthropy and commercial interest at work in the Googlization of medical research have implications for both the quality of the research that will ensue and issues of social justice.

 

Health data cooperatives

Author: Michele Loi (ETH Zürich)

Short Abstract

MIDATA.coops are an institutional innovation aiming to enable citizens to gain control over their data, especially health data. This paper analyses the mission and role of MIDATA.coops within the data ecosystem, highlighting the ethics and government questions that are currently under discussion.

Long Abstract

MIDATA.coops aim to enable citizens to control their data especially health data. The paper seeks to clarify the mission of MIDATA.coops and their role within the data ecosystem. In particular the following issues will be discussed:

1. Why should citizens organize themselves as a cooperative in order to gain control of their data?

2. What functions should a cooperative have and what functions can be left to the private sector?

3. What, if any, should be the role of the for profit sector as a partner?

4. By virtue of what kind of ethical framework, can data cooperative ensure ethical conduct in data transactions by all of their members?

5. How can health data cooperatives survive in a digital economy environment dominated by large businesses, without being absorbed and transformed in their goals?

 

Precision medicine. Self-understanding in a molecularised framework

Author: Mira Vegter (Institute For Science, Innovation and Society)

Short Abstract

This paper argues that Precision Medicine promises a molecularly based openness affecting our identities in unprecedented ways. Can precision medicine be transformed into more emancipatory and empowering self-techniques? (Foucault 1986)

Long Abstract

The Precision Medicine Initiative (Obama administration 2015) is a broad research collaboration which focuses on individual data to build an healthcare scheme that will take into account genes, environment, and life style. The promise to address a more individual understanding of health and disease targets ‘molecular’ traits more specifically. Despite disclaimers that ‘precision’ does not mean patient-centered care, ‘precision’ is suggestive to being personalized; this paper investigates precision medicine in its relation to the individual.

This paper argues that Precision Medicine forms a new space of knowledge that builds on its predecessors ‘Laboratory Medicine’ (Jewson 1976) and ‘Surveillance Medicine’ (Armstrong 1995). The combination of scientistic and molecularised medicine on the one hand and broad population studies on the other, is what makes precision medicine such a powerful framework. Laboratory knowledge is represented through its space of illness ‘outside the body’; underneath the microscope, while population studies are defined in terms of risk, that adds a temporal axis. These two characteristics create the opportunity to think of oneself in new terms, a molecularly based openness affecting our identities in unprecedented ways, which is new and in need of philosophical reflection. Foucault is used to understand these new knowledge practices. Although Precision Medicine may serve to shape conduct of the individual because it opens up the self for scrutiny by others, it is also opened up to self-scrutiny. The individual may transform precision medicine into more emancipatory and empowering self-techniques. (Foucault 1986)

 

How a data-driven life fosters biomedicalization

Authors: Linda Lombi (Catholic University of Sacred Heart)
Antonio Maturo (Università di Bologna)

Short Abstract

A research on the apps for mental health has been carried out. The hypothesis is that these tools are a new driver of pharmaceuticalization. The results show as the use of these apps strength the neoliberal idea of health as an individual responsibility, marginalizing any discourse on social justice.

Long Abstract

Contemporary society is becoming increasingly medicalized (Light and Maturo, 2015). The last three versions of the DSM are characterized by a steady increase in the number of syndromes included (Conrad and Maturo, 2009). Indeed, mental health is likely the most pharmaceuticalized sphere (Abraham, 2010). On these basis, a research on the apps for mental health has been carried out. The hypothesis of the research is that the apps used to self-track different aspects of mental health are a new driver of pharmaceuticalization. The apps for health give rise to a neo-liberal discourse in which the subject is understood as a self-entrepreneur responsible for her own productivity (Lupton, 2014). The so-called “quantified self” acts on reality with the conviction that a data-driven life can enhance one’s health status. The mechanisms that foster this attitude are “gamification” and “quantification”. We seek to demonstrate this through a content analysis of the 12 most downloaded mental health apps focused on two different kinds of texts: the description provided by the app itself and the reviews written by its users. The investigation reveals that these types of apps are giving rise to an idea of the subject which is completely separated from social factors, with a strong emphasis on pharmaceuticals as the best response to mental disorders. As a result, this de-policitization and molecularization of mental health brought about by the apps strengthens the neoliberal idea of health as an individual responsibility, marginalizing any discourse on social justice.

Emerging ethical issues regarding digital health data.

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