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UZH News: Is citizen science a new phenomenon?
Effy Vayena: No, but today’s communication technology allows for a much simpler and broader participation by citizens in research projects. In the area of health, for example, many people today collect data on their fitness or nutrition on their mobile devices. This kind of data could also easily be made available for research purposes. There is great potential. For science, citizen science means, among other things, the availability of large and thus more representative amounts of data, and the ability to reduce data collection and analysis costs and obtain findings faster. Citizen scientists are collaborators and partners in the research enterprise. They are more engaged with the scientific process and an integral part of it.
Why hold a workshop on citizen science?
Citizens participate in numerous projects at the research centre in Zurich. Mike Martin, a professor of gerontology at the University of Zurich, works with seniors. They take part in studies, provide information about their lives and participate in memory tests. Christa Dürscheid, professor at the German Department, examines how we use text messages to communicate. Thousands of texters have donated their messages to the project. At our workshop, we want to bring the Zurich scientists working on these kinds of projects and citizens together in order to discuss what it takes for citizen science to work.
What are the most important questions?
We must ensure that citizen participation occurs in an ethically acceptable manner. Participation must be on a voluntary basis, for example, and citizens should not be exposed to unreasonable risks. In addition, participants should be recognised for their contribution and be able to benefit in some way.
Is this always the case?
Not necessarily. For example, some research in the health domain, where I focus, used online data without permission by those whose data were used. Patients exchange information about their disease experiences on platforms – an interesting data source for scientists, but under what conditions should these data be used? On the internet, the border that separates public and private information is blurred. The fundamental principle of ‘informed consent’ to participate in a research project is correspondingly unclear. Most citizen science project happen online, how does these ethical questions play out? These are questions we need to think about carefully.
How can the situation be improved? We need guidelines and rules to deal with such questions. And we need appropriate instruments that help us initiate and accompany citizen participation effectively in research projects. Such guidelines are only in their infancy today. This workshop aims to begin the discussion about how to develop such frameworks, tools and guidance for the Zurich institutions and the citizens here and elsewhere. I am hoping for broad participation, not only from scientists but from citizens too. It is important that this is dialogue amongst all interested parties and that citizens are playing an influential role in the deliberations.