Even as novel technologies emerge and medicines advance, pathogen-transmitting mosquitoes pose a deadly and accelerating public health threat. Detecting and mitigating the spread of Anopheles stephensi in Africa is now critical to the fight against malaria, as this invasive mosquito poses urgent and unprecedented risks to the continent. Unlike typical African vectors of malaria, An. stephensi breeds in both natural and artificial water reservoirs, and flourishes in urban environments. With An. stephensi beginning to take hold in heavily populated settings, citizen science surveillance supported by novel artificial intelligence (AI) technologies may offer impactful opportunities to guide public health decisions and community-based interventions. Coalitions like the Global Mosquito Alert Consortium (GMAC) and our freely available digital products can be incorporated into enhanced surveillance of An. stephensi and other vector-borne public health threats. By connecting local citizen science networks with global databases that are findable, accessible, interoperable, and reusable (FAIR), we are leveraging a powerful suite of tools and infrastructure for the early detection of, and rapid response to, (re)emerging vectors and diseases.
The collaborative nature of citizen science raises important questions about managing ownership of its research outputs. Potential citizen science research outputs include data sets, findings, publications, and discoveries of new ideas, methods, products, and technologies. Unlike citizen science projects conducted in other disciplines, biomedical citizen science projects often include features, such as contribution of personal health data, that might heighten citizen scientists’ expectations that they will be able to access, control, or share in the benefits of project outputs. Here, we refer to moral claims of access, control, and benefit as ownership claims, and a project’s management of ownership claims as its ownership practices. Ethical management of ownership is widely recognized as an important consideration for citizen science projects, and practitioners and scholars have described helpful recommendations for preempting issues and engaging stakeholders on practices. Building on this literature, we propose a framework to help biomedical citizen science projects systematically evaluate the ethical soundness of their ownership practices based on four considerations: reciprocal treatment, relative treatment, risk-benefit assessment, and reasonable expectations.
Exposure to radon is a leading cause of lung cancer worldwide. However, few test their homes for radon. There is a need to increase access to radon testing and decrease radon exposure. This longitudinal, mixed-methods study using a citizen science approach recruited and trained a convenience sample of 60 non-scientist homeowners from four rural Kentucky counties to test their homes for radon using a low-cost continuous radon detector, report back findings, and participate in a focus group to assess their testing experience. The aim was to evaluate changes in environmental health literacy (EHL) and efficacy over time. Participants completed online surveys at baseline, post-testing, and 4–5 months later to evaluate EHL, response efficacy, health information efficacy, and self-efficacy related to radon testing and mitigation. Mixed modeling for repeated measures evaluated changes over time. Citizen scientists reported a significant increase in EHL, health information efficacy, and radon testing self-efficacy over time. While there was a significant increase in citizen scientists’ confidence in their perceived ability to contact a radon mitigation professional, there was no change over time in citizen scientists’ beliefs that radon mitigation would reduce the threat of radon exposure, nor was there a change in their capacity to hire a radon mitigation professional. Further research is needed to understand the role of citizen science in home radon mitigation.
In citizen science, in-depth interviews have advanced the understanding of project leaders’ and citizen scientists’ objectives, motivations, attitudes, and concerns. The issues encountered by researchers conducting in-depth interviews in citizen science are likely not unique to this field. However, these issues can surface and play out in distinct ways that depend on the scientific and sociopolitical circumstances of citizen science communities and projects. Researchers’ experiences conducting in-depth interviews are the subject of a growing literature that describes considerations for conducting research with discrete populations. We aim to contribute to this literature by describing salient practical, ethical, and legal issues to consider when interviewing biomedical citizen scientists, with a focus on bottom-up biomedical citizen scientists who have loose or no affiliations with traditional scientific institutions. These issues concern how to define the interview population; earn trust and demonstrate trustworthiness given past treatment of bottom-up biomedical citizen scientists by traditional researchers and institutions; adapt research practices to the strong culture of openness that characterizes bottom-up biomedical citizen science; and manage potential safety concerns. This essay draws on our own experiences and those of other qualitative researchers and makes suggestions for addressing these issues in ways intended to protect study integrity and demonstrate respect for participants. We also identify questions that would benefit from broad input and continued study. Our objectives in sharing these lessons learned are to support future research and to improve understanding of this exciting participatory space.
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.
