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Why citizen science is integral to infectious disease prevention

by Orsolya Bajer-Molnár

Citizen or Community Science (CS) is commonly used for ‘the practice of non-professional participation in scientific research, including data collection, to support scientific investigation and knowledge'. The definition often suggests a one-way transfer of information, with citizens gathering data and channeling their work into the larger research process. However, the real value of CS is the bidirectional flow of information. On the one hand, researchers benefit from enthusiastic participants they can train and from which they can acquire larger datasets. But in addition to helpful pairs of hands, the expert knowledge of citizens in particular settings, topics or processes often exceeds that of 'outsider' scientists. When investigating, for instance, sources of environmental pollution, reasons behind rising unemployment rates, or efficiency of digital education, citizens dealing with such issues become the go-to experts for researchers.

This is one of the main reasons we try to involve them in my project centered around infectious disease prevention. As we have seen throughout the COVID-19 pandemic, when it comes to controlling an already spreading infection, health care interventions are characterized by top-down regulations stemming from global organizations towards the general public, such as mandatory mask-wearing, regular large-scale screening, etc. These regulations are all absolutely necessary and of vital importance for mitigating damages of an epidemic, but they are unable to prevent the outbreak of a newly emerging pathogen or emerging infectious disease (EID).

One project we conducted involved underprivileged youth in an urban environment as part of a joint effort between the KLI and the Ludwig Museum Budapest. I was responsible for delivering the scientific content regarding viral spreading patterns, evolutionary diversity and emergence, which were then designed into interactive art projects to be conducted by the students. Through building 3D spreading networks based on their individual habits, trying to replicate molecules representing the DNA and decoding their names using triplet codons they provided data on locations likely to produce infection clusters, while they also learnt about the evolutionary mechanisms of disease, and understood the long-term risks associated with viral diversity.

My research operates within the DAMA (Document - Assess - Monitor - Act) protocol, an umbrella framework for preventing new waves of emerging diseases. It is based on the evolution of emergence, but integrates concrete activities ranging from the local, boots-on-the-ground contributions of citizen scientists to the most sophisticated technologies of bioinformatics, molecular biology and satellite surveillance. Our goal is to truly prevent diseases not by inhibiting outbreaks from developing into epidemics, but by preventing outbreaks caused by pathogens crossing from reservoirs to human hosts.

The key difference between “epidemics” and “outbreaks” is that epidemics cover a large proportion of the population, whereas outbreaks always happen on a small, local scale. Therefore, combating outbreaks  requires us to ask for the expertise and contribution of local communities that are most exposed to emerging pathogens. These include urban poverty with low access to health care, rural neighborhoods involved in agriculture, or regions with low level of infrastructural development, etc. Involving community members in designing intervention plans benefits our research by (i) enabling us to align interventions with local environmental and cultural settings, (ii) gaining their expert insights into how how diseases and safety measures affect their lives and (iii) builds communication channels and trust between scientific and non-scientific communities.

I am thus currently working on a proposal to introduce a citizen science initiative into a Viennese setting, based on the program of New York City Virus Hunters. Working with the leader, Christine Marizzi, we aim to start a program involving marginalized Viennese youth in monitoring and identifying dangerous pathogens in urban wildlife. In line with the DAMA protocol, this will allow us to prevent the emergence of diseases living in close vicinity of highly exposed, low-income communities, and at the same time provide underserved high school students with authentic, professional research experience under expert mentorship.