Science by, with and for citizens: rethinking ‘citizen science’ after the 2011 Fukushima disaster

AbstractThis study illustrates how citizen-driven radiation monitoring has emerged in post-Fukushima Japan, where citizens generate their own radiation data and measurement devices to provide public with actionable data about their environments. Drawing on ethnographic fieldwork in and around Fukushima Prefecture, it highlights the multifaceted character of these bottom-up, citizen-led efforts, contrasting these initiatives with the emergence of “citizen participatory” science policy discourses in Japan. Recognizing the contested nature of citizenship in Japan and in the nuclear arena, the article considers how terms and definitions shape the participation of citizens and other stakeholders (local communities, public authorities, regulators, and professional scientists) in science and technology in culturally and historically specific ways. It builds on these observations to open up new spaces of expertise, which engage all stakeholders through social-scientific intervention.</jats:p

Contemporary Wiradjuri relatedness in Peak Hill, New South Wales.

Wiradjuri Aboriginal people in Peak Hill, a small economically-declining town in central rural New South Wales, have been subjected to a century of government policies included segregation, assimilation, and forced relocations. Despite this local, colonial history Peak Hill Wiradjuri continue to experience daily life in a distinctively Wiradjuri way. To ‘be Wiradjuri’ is to be embedded within a complex web of close relationships that are socially, morally and emotionally developed with both kin and friends, human and non-human subjects. Despite dramatic social and cultural transformations in Wiradjuri meanings and practices of relatedness, the Wiradjuri social world and their ways of self-experience remain informed by past practices. To understand contemporary socialities, and thus the significance of these transformations, this thesis is an examination of the ways in which the moral and emotional order of relatedness governs relatedness, where daily lived experience of shared emotional states can be understood in terms of a language for the self and moral framework. Specifically, this thesis is an exploration of how Wiradjuri people negotiate relatedness in a space in which shared and contrasting Wiradjuri and non-Wiradjuri inter-subjectivities are experienced. This study draws on historical research and ethnographical fieldwork to move beyond an analysis of kinship in terms of structures, roles or values to explore the deeper foundations of emotions and states of being in everyday life

Mapping the use of computational modelling and simulation in clinics: A survey

In silico medicine describes the application of computational modelling and simulation (CM&S) to the study, diagnosis, treatment or prevention of a disease. Tremendous research advances have been achieved to facilitate the use of CM&S in clinical applications. Nevertheless, the uptake of CM&S in clinical practice is not always timely and accurately reflected in the literature. A clear view on the current awareness, actual usage and opinions from the clinicians is needed to identify barriers and opportunities for the future of in silico medicine. The aim of this study was capturing the state of CM&S in clinics by means of a survey toward the clinical community. Responses were collected online using the Virtual Physiological Human institute communication channels, engagement with clinical societies, hospitals and individual contacts, between 2020 and 2021. Statistical analyses were done with R. Participants (n = 163) responded from all over the world. Clinicians were mostly aged between 35 and 64 years-old, with heterogeneous levels of experience and areas of expertise (i.e., 48% cardiology, 13% musculoskeletal, 8% general surgery, 5% paediatrics). The CM&S terms “Personalised medicine” and “Patient-specific modelling” were the most well-known within the respondents. “In silico clinical trials” and “Digital Twin” were the least known. The familiarity with different methods depended on the medical specialty. CM&S was used in clinics mostly to plan interventions. To date, the usage frequency is still scarce. A well-recognized benefit associated to CM&S is the increased trust in planning procedures. Overall, the recorded level of trust for CM&S is high and not proportional to awareness level. The main barriers appear to be access to computing resources, perception that CM&S is slow. Importantly, clinicians see a role for CM&S expertise in their team in the future. This survey offers a snapshot of the current situation of CM&S in clinics. Although the sample size and representativity could be increased, the results provide the community with actionable data to build a responsible strategy for accelerating a positive uptake of in silico medicine. New iterations and follow-up activities will track the evolution of responses over time and contribute to strengthen the engagement with the medical community

Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States

Does genetic information warrant special legal protection, and if so how should it be protected? This essay examines the most recent (and indeed only) significant effort by the US government to prohibit genetic discrimination, the Genetic Information Nondiscrimination Act (GINA). We argue that the legislation is unlikely to have the positive impact sought by advocates of genetic privacy and proponents of biobanks. In part, GINA disappoints because it does too little. Hailed by its promoters as “the first civil rights act of the 21st century,” GINA’s reach is in fact quite modest and its grasp even more so. But GINA also fails by trying to do too much, tying the hands of insurers and employers in ways that may fail to serve the interests of individuals or society more generally. In short, if genetic discrimination is a problem that needs to be solved, GINA is not the solution. Instead, the Act creates a number of new and possibly intractable problems that may be more troublesome than what it originally set out to resolve

On the Politics of Calculative Devices. Performing life insurance markets

This article examines the politics of calculative devices in one of the most successful areas of finance, the life insurance business. By empirically tracing an insurance applicant's risk trajectory, it analyses how calculative devices perform insurance underwriting through acting on insurance risk decisions. This allows one to document what calculative devices exactly do, and to point out the political effects of what they do. First, it highlights the fact that, contrary to thinking in terms of ‘the insurance logic’, there are multiple ways of calcuting life insurance risks. Second, it underscores the crucial role of calculative devices in that process by demonstrating how they align considerations as divergent as economics and medicine to perform a life insurance market. It then demonstrates the political effects of these calculative devices by making explicit how the latter contribute to the production of inequalities in calculative power in life insurance. In this way, the article links up insights from the performativity approach in the sociology of markets with the broader question of governing economic life. Such an approach, it is argued, provides the opportunity to open up the organization of economic markets and to put classic questions of justice and power struggles in economic markets on the agenda again

Genetics 'risk carriers' and life style 'risk-takers' : which risks deserve our legal protection in insurance?

Over the past years, one of the most contentious topics in policy debates on genetics has been the use of genetic testing in insurance. In the rush to confront concerns about potential abuses of genetic information, most countries throughout Europe and the US have enacted genetics-specific legislation for insurance. Drawing on current debates on the pros and cons of a genetics-specific legislative approach, this article offers empirical insight into how such legislation works out in insurance practice. To this end, ethnographic fieldwork was done in the underwriting departments of Belgian insurance companies. Belgium was one of the first European countries introducing genetics-specific legislation in insurance. Although this approach does not allow us to speak in terms of ‘ the causal effects of the law’, it enables us to point to some developments in insurance practice that are quite different than the law’s original intentions. It will not only become clear that the Belgian genetics-specific legislation does not offer adequate solutions to the underlying issues it was intended for. We will also show that, while the legislation’s focus has been on the inadmissibility of genetic discrimination, at the same time differences are made in the insurance appraisal within the group of the asymptomatic ill. In other words, by giving exclusive legal protection to the group of genetic risks, other non-genetic risk groups are unintendedly being under-protected. From a policy point of view, studying genetics-specific legislation is especially valuable because it forces us to return to first principles: Which risks deserve our legal protection in insurance? Who do we declare our solidarity with

Genetics 'risk carriers' and life style 'risk-takers' : which risks deserve our legal protection in insurance?

Over the past years, one of the most contentious topics in policy debates on genetics has been the use of genetic testing in insurance. In the rush to confront concerns about potential abuses of genetic information, most countries throughout Europe and the US have enacted genetics-specific legislation for insurance. Drawing on current debates on the pros and cons of a genetics-specific legislative approach, this article offers empirical insight into how such legislation works out in insurance practice. To this end, ethnographic fieldwork was done in the underwriting departments of Belgian insurance companies. Belgium was one of the first European countries introducing genetics-specific legislation in insurance. Although this approach does not allow us to speak in terms of ‘ the causal effects of the law’, it enables us to point to some developments in insurance practice that are quite different than the law’s original intentions. It will not only become clear that the Belgian genetics-specific legislation does not offer adequate solutions to the underlying issues it was intended for. We will also show that, while the legislation’s focus has been on the inadmissibility of genetic discrimination, at the same time differences are made in the insurance appraisal within the group of the asymptomatic ill. In other words, by giving exclusive legal protection to the group of genetic risks, other non-genetic risk groups are unintendedly being under-protected. From a policy point of view, studying genetics-specific legislation is especially valuable because it forces us to return to first principles: Which risks deserve our legal protection in insurance? Who do we declare our solidarity with