Abstract: Understanding the factors that affect participation plays a crucial role in the success of any contributory citizen science project. We focus our study on the general public, who most likely have not participated in citizen science before, since they constitute a large part of society and their opinions have not been studied thoroughly. We first describe the survey, which was answered by 209 respondents in Germany who mostly had no prior experience in citizen science, that seeks to addressthe factors of personality traits, properties of citizen science projects, and general motivations. Our study focuses on two different levels of participation: in specific sample projects and in contributory citizen science in general, both of which are embedded in the survey. We use manual text clustering and linear regression models to study the different types of inputs from the respondents. We identify contribution to science, the fun element of the projects, personal interests, and new knowledge acquired from participation as the most significant motivators for the future intention of participating in the sample citizen science projects. On a higher level, the general motivations concerning “values” and “understanding” are the main drivers behind participants’ future intention of participating in contributory citizen science. Meanwhile, no personality traits are found to be influence the intentions of the respondents. Based on these findings, several enhancements to the recruitment and communication strategies of citizen science projects can be made to maximize the participation of potential citizen scientists. Published on 2023-01-10 10:40:04
Abstract: On January 12, 2010, Haiti was hit by one of the largest seismic disasters known to date. At the time, the culture and perception of seismic risk was low among the population and—because of the lack of seismic sensors in Haiti—so was seismological knowledge.In a citizen seismology approach, the S2RHAI project used low-cost seismic sensors (Raspberry Shake) to (1) complement the national seismic network and (2) to improve risk perception, preparedness, and scientific knowledge of the population. Through these objectives, we introduce a paradigm shift in which seismic networks are not only composed of sensors, but also of citizens who gather around these tools and the information they produce.We present here the results of a qualitative survey of 15 Raspberry Shake (RS) seismometer hosts in Haiti. Semi-structured interviews were conducted to learn about users’ experience to assess their motivations, difficulties, and expectations in this citizen seismology process. We found that RS hosts expressed pride and interest in being part of the RS network and actively contributing to risk reduction in their community. Some of them reported a form of empowerment in that they could compensate for the deficiency of the state, which they generally distrust. However, the RS hosts also expressed the need for more technical and scientific support from scientists. Also, few of them engaged in mediation activities or discussions with their community members, partly because they feared that this would awaken the trauma caused by the earthquake of 12 January, 2010. This allowed us to list concrete actions to (1) improve the seismic information system, (2) better integrate the volunteers into the network, (3) enrich the collaboration between citizens and seismologists, and (4) accompany them in their role as ambassadors to their community. We conclude that understanding the motivations, obstacles, and expectations of volunteers is essential to increase the chances of sustainability of this citizen seismology project. Published on 2023-01-10 10:30:53
Abstract: Community science involves scientists and community members co-creating and co-executing scientific research. Given their deep engagement of non-scientists, these projects have great potential to improve their participants’ scientific knowledge and pro-environmental attitudes, as well as to collect first-order data on issues of local and scientific concern. To investigate this potential, we implemented a community science project to monitor an endemic species of sea lion in the Galápagos Islands and empirically assessed its impacts on the community scientists (local high-school students). We discovered that our community scientists increased their understanding of the nature of science, knowledge of sea lion biology, and intrinsic motivations for conservation as a result of their participation. These results provide empirical evidence that community science initiatives can be effective tools for helping community members to increase both their scientific knowledge and their environmental awareness. Published on 2023-01-10 09:59:01
Abstract: The National Institutes of Health (NIH) is the largest funding agency for biomedical and behavioral research in the United States, supporting basic, translational, and clinical research to drive discoveries and knowledge that enhance health, lengthen life, and reduce illness and disability. The NIH invests in research that runs the gamut from basic biological mechanisms to innovative device development; environmental public health; and behavioral, implementation, and population sciences. Citizen science methodologies and approaches have broadened opportunities for public involvement across the full spectrum of biomedical research. The NIH has a long history of supporting citizen science and public-partnered research. It is challenging to estimate the investment that NIH has made in citizen science given the diverse fields, program types, and project organization that NIH-supported citizen science exemplifies and the expansion into related disciplines. The common thread through these diverse programs is a meaningful partnership with the public as direct collaborators and participants. Here, we describe unique examples of successful biomedical citizen science and community-engaged research projects that are hosted by NIH or that have received NIH support, and highlight the different terms used to encourage and report on citizen science and related methodologies. Published on 2022-12-15 12:44:41
Abstract: The practice of medicine is typically conceptualized as remaining within the boundaries of a hospital or clinic. However, in recent years, patients have been able to gain access to information about medical research as it is ongoing. As a result, there has been a rise in do-it-yourself (DIY) medicine, where individuals treat themselves for medical conditions outside of clinical settings, often mimicking experimental therapies that remain inaccessible to the wider public. For example, in DIY brain stimulation, individuals suffering from depression build at-home electrical headsets using nine-volt batteries, mimicking an experimental neuroscience technique used in scientific laboratories. In DIY fecal transplantation, those with intestinal disorders like C. Difficile and inflammatory bowel disease transplant stool from donors into themselves with the aid of blenders and enemas. In the open Artificial Pancreas System movement, diabetes patients hacked together an artificial pancreas system from their glucose monitors and insulin pumps, years before such a system was approved by the United States Food and Drug Administration (US FDA). To date, scholarship on DIY medicine has largely been relegated to specific medical domains (e.g., neurology, gastroenterology, infectious disease). In this paper, however, I recognize DIY medicine as a cross-cutting phenomenon that has emerged independently across medical domains but shares common features. I map the varieties of DIY medicine across these domains and suggest that four key factors lead to their creation, growth, and uptake. In doing so, this essay sheds light on an understudied area of biomedical citizen science that is likely to grow substantially in the coming decades. Published on 2022-12-15 12:37:43
Abstract: The concept of One Health, a system-based approach that acknowledges the interdependence of human, animal, and ecosystem health, has grown in prominence over the past few decades. This transdisciplinary concept is increasingly important as the climate crisis, directly and indirectly, impacts all aspects of the planetary web of life. In tandem with the rise of One Health has been the increasing adoption of digital technologies into healthcare practice and within methods used to research human and environmental health. Emerging at the intersection of One Health and Digital Health is the idea of One Digital Health. This syncretic concept explores the opportunities that digital health presents to further the utility and operationalisation of One Health. A notable feature of the One Digital Health model is the role of citizen engagement. This feature aligns the digital approach with many One Health interventions that use citizen science to improve human, animal, and environmental health. This paper reports the results of a rapid review followed by a deep-dive into several representative studies exploring the intersections of One Health, digital health, and citizen science to identify new domains of innovative practice that supports resilience in the face of climate change and environmental health hazards. A focus on air quality reflects its importance in the One Health literature. Published on 2022-12-15 12:25:24
Abstract: Citizen science goes by many names, especially when citizen science is applied to healthcare and biomedicine: There are patient researchers, patient-driven innovators, lead users, quantified self-trackers, and more. Citizen science in healthcare goes beyond data collection; citizen scientists themselves perform many stages of science and research all the way through to dissemination of their work. They may find themselves facing barriers similar to those facing traditional academic researchers in academic publishing; however, these challenges are exacerbated by the very nature of citizen science, which is often individually driven and unfunded. Additional barriers in dissemination, such as structural barriers of journal publication systems, conscious and subconscious biases of editors and reviewers, the financial and time costs associated with dissemination, and more, can challenge citizen scientists. Some of the barriers are concrete while others are perceived but may be no less challenging. This essay highlights the barriers of citizen science work in healthcare, with special attention to the challenges of dissemination, including those experienced by a citizen scientist who has been addressing these challenges for nearly a decade. I provide three potential strategies with relevant examples for addressing some of the dissemination challenges, and provide additional dissemination advice—and encouragement—for citizen scientists in biomedicine and healthcare. Published on 2022-12-15 12:15:02
Abstract: Standards are useful in the development of medicine because they enable communication and consistency in experimentation. Standards, however, often require expensive tools like laboratories and clinical trials. How, then, might citizen scientists develop standards given the difficulty of obtaining these tools' This article provides one answer, by describing how Clusterbusters, a non-profit organization that represents an online network of people with cluster headache, developed a standardized protocol for using psychedelic mushrooms as a treatment for their disease without the assistance of laboratory equipment or institutional scientific support. In a multi-sited, digital ethnographic investigation of Clusterbusters, we find they used multiple strategies to standardize their experiments. Clusterbusters consumed their medicine in the form of homegrown psilocybe mushrooms because they lacked access to pharmaceutical-grade psilocybin. A dose of a mushroom cannot be standardized as easily as an isolated chemical, yet each individual experimenter needed to understand how much psychedelic they were about to consume. They solved their problem by developing an “embodied standard” for dosage that combined both the weight of the dried mushroom and the subjective experience the dosage produced. This hybrid measure enabled Clusterbusters to develop a collective phenomenological understanding of a standard dosage. Our discussion highlights how the pragmatic goals of knowledge production of citizen science differ from the institutionalized scientists’ need to legitimate their findings with academic journals, peers, and regulatory agencies. This insight may be useful not only for those who study citizen science, but also those who work with institutionalized protocols in other domains. Published on 2022-12-15 12:08:42
Abstract: This article uses the sociological concept of boundary work to evaluate how epistemic authority is performed in citizen science initiatives. Drawing on two case studies of boundary work in practice, first in the ecosystem of science journalism before and during the pandemic, and second through the Virginia Tech team’s analysis of their experience in Flint, Michigan, I demonstrate how the legitimacy of citizen science is powerfully shaped by the perspectives of professional or credentialed experts. I argue that demarcations of credibility are an omnipresent but often unacknowledged force in citizen science, and that the meaning of credibility is often dictated by the norms and standards of dominant or mainstream scientific cultures. Recognizing performances of boundary work can reveal how epistemic exclusion is enacted in citizen science, as well as how contradictions or crises of credibility become exacerbated when the social relations of expert authority shift. In conjunction with other recent proposals to expand the terminology and institutional recognition of citizen science, I suggest that scholars and practitioners of citizen science could benefit from reflexive analysis of epistemic exclusion. Published on 2022-12-15 12:01:50
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