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,” 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.

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