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!

Advertisements

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

CROWDSOURCING THE HUMAN GUT. IS CROWDSOURCING ALSO ‘CITIZEN SCIENCE’?

 

The paper “CROWDSOURCING THE HUMAN GUT. IS CROWDSOURCING ALSO ‘CITIZEN SCIENCE’?” is online!

http://jcom.sissa.it/archive/15/03/JCOM_1503_2016_A03

CROWDSOURCING THE HUMAN GUT. IS CROWDSOURCING ALSO ‘CITIZEN SCIENCE’?

Lorenzo Del Savio, Barbara Prainsack, Alena Buyx

Abstract:

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.

Working Paper: Opening the black box of participation in medicine and healthcare.

Our working paper for the Institute of Technology Assessment is online!

http://www.oeaw.ac.at/ita/en/publications/ita-series/ita-manuscripts/

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.

 

 

An Asilomar for DIY biology and the shadow cabinet of science

In February 1975 biologist Paul Berg convened a meeting in Asilomar (US) to discuss with fellow biologists the biohazards of the newly found recombinant DNA technique. They agreed to employ particular standards of containment in their recombinant DNA experiments and banned a number of experiments that were deemed to be particularly hazardous. Most importantly, by issuing recommendations to the scientific community, Asilomar scientists deflected part of the public concerns regarding DNA manipulation, possibly avoiding restrictive regulation, and set self-restraint as a major regulatory option in the governance of biosciences.

References to Asilomar have multiplied ever since the CRISPR-cas9 system dramatically enhanced genome editing capabilities, leading to substantial ameliorations in research conducted on genetically modified cell strains or organisms. Genome editing has fuelled again a debate on the responsibility of science, and the limits of research. But the context of biomedical research has changed profoundly, with ever deeper entanglement between industries and academia, rising private funding, and the emergence of biotech powerhouses outside the perimeter of the American and Euro-American science of the post-war.

A novel actor in the research landscape that was absent back in 1975 is the Do-It-Yourself biology community. One is tempted to suppose that technological advancements move scientific research further away from non professional researchers. Research hardware becomes more expensive and hence it is monopolized by few, big, research centres. And indeed this might have been one of the drivers of the professionalization of research in the XX century, when it was no longer possible to do cutting-edge research within the limited budget of (rich) households. There is however a reverse side to this trend: any gain in technological efficiency makes technology more affordable. Think about this: your laptop has computing capabilities that match those of the best research centres worldwide only very few decades ago. This is the same process that allows amateurs to tinker with genomes in their own garage-labs (as the mythology surrounding DIY research has it).

DIY biology has attracted the attention of regulators, and even the professional research community, on the basis of safety concerns. In a recent issue of Nature, biomedical scientist Todd Kuiken argued however that DIY research communities are ahead of science in terms of self-restraint. DIY communities have already convened their own Asilomar – actually an iterative exercise in deliberation that produced a code of conduct. Obviously, rogue individuals cannot be stopped by declarations of self-restraint issued by self-appointed representatives of the DIY community. But this is exactly what might happen in the professional research community as well. And indeed reputation and name-and-shame practices make this Asilomar of citizen scientist a realistic tool for hazard governance of DIY biosciences (the very same comment exemplifies this practice as it condemn a particular DIY project that does not meet community standards).

The development of DYI into a semi-professionalized and structured independent community is not surprising. Alessandro Delfanti has argued that one of the cultural roots of biohacking is precisely the desire to live up the standards of “Mertonian” science in an era where big money has entered the picture and threatened the purity of research conduct and aspirations. If that is the case, we can add that one important social role of DIY communities is that of being a “shadow cabinet” of science of a sort: with no budget but considerable leverage to steer official research by doing better than it does. Yet this role requires structure, and a minimal similarity to “official” science. The Asilomar of citizen science does just that. At the same time, the limitations of a Mertonian model of science – and indeed of the Asilomar conference as well – may be inherited by citizen science, and chiefly the ideology of purity and the deceptive seclusion of science from society that this ideology generates. This would be an ironic fate for a movement that has picked up the banner of scientific citizenship to promote its ideals. But of course, there is a certain trade off between being a shadow cabinet of science and being a place where every curious can just walk in.

Distributed computing and citizen science

In a recent Nature news issue (9th, March), science reporter Davide Castelvecchi describes Einstein@home, a distributed computing project that analyses astronomical data. Such data are collected by the LIGO project, which hit the headlines in January when the detection of gravitational waves from a black-hole merger was confirmed. Einstein@home searches for signals of gravitational waves coming from other types of astronomical objects, especially  fast-spinning neutron stars. Such search is computationally very intensive, and lends itself to distributed computing.

 

Distributed computing is made possible by the wide availability of processors (i.e. our PCs), their being networked and the fact that the typical user of a PC only uses a fraction of the computing capabilities of her machine. Platforms for distributed computing exploit this processing idle-time for computing-intensive tasks, and especially analytic tasks in big data science. There are several advantages of distributed computing, size being the most important one. Just think about the technical challenge of cooling down, let us say, 10.000 computers piled in one physical location. Many research groups around the world opt for “citizen science” approaches, as in the title of the Nature report, when faced with the computational limitations of their own in-lab computers.

 

What does distributed computing have to do with citizen science anyway? Seemingly little: this form of volunteerism requires very little from participants, which are not even asked to use their own brain power as it happens instead in gamified tasks. The sense in which volunteering personal computer time counts as doing science is very thin indeed. This is just part of the picture however, and not even the most important.

 

The fact that major chunks of the infrastructure required to do science – to produce knowledge – is dispersed throughout the population has several desirable features. It firstly means that some non-negligible parts of the means of production of knowledge are controlled by you and me. Individual decision power on research agendas is of course very small, indeed negligible. But collectively the thousands of volunteers that decide to download Einstein@home do vote on what science they want it to happen.

 

Recently, researches in behavioural psychology and IT sciences have started looking at how incentives can be created to allure participants in citizen science and gamified projects, and keep them contributing once they get in. This is not surprising and indeed it closely mirrors what has happened in the internet more generally. The artisanal and even subversive beginnings were taken over or outnumbered by all sort of projects that nudge people into productive behaviors that have little to do with their being in control on knowledge production (although of course they may have other desirable effects).

 

It is just reassuring that Einstein@home website does not boast to lounge-like lofty appearance of so many web 2.0 platforms but proudly employs the basic 2005 homepage that ensures that little time was spent by researchers on nudging. And beyond the façade, there is the even sturdier page of BOINC platform, the open-source software for volunteer computing employed by academic research projects around the world.
Open-source software is the paradigm of new forms of production. Together with distributed computing open-source software is indeed a defining part of how production could look like in a networked society. “Citizen science” is then not the name for what happens when you download a screensaver that warns you that your computer is being used by LIGO-scientists, but a broader ideal regarding how knowledge production is changing, including cutting-edge astrophysics.