Revisiting digital technologies: envisioning biodigital bodies

In this paper the contemporary practices of human genomics in the 21st century are placed alongside the digital bodies of the 1990s. The primary aim is to provide a trajectory of the biodigital as follows: First, digital bodies and biodigital bodies were both part of the spectacular imaginaries of early cybercultures. Second, these spectacular digital bodies were supplemented in the mid-1990s by digital bodywork practices that have become an important dimension of everyday communication. Third, the spectacle of biodigital bodies is in the process of being supplemented by biodigital bodywork practices, through personal or direct-to-consumer genomics. This shift moves a form of biodigital communication into the everyday. Finally, what can be learned from putting the trajectories of digital and biodigital bodies together is that the degree of this communicative shift may be obscured through the doubled attachment of personal genomics to everyday digital culture and high-tech spectacle.Keywords: genomics, biodigital, bodies, spectacle, everyda

Strengthening Cross-border Law Enforcement Cooperation: the Prüm Network of Information Exchange

The Prüm network was established to provide mechanisms and the infrastructure to achieve a closer cooperation between the EU member states in combating terrorism, organised crime and illegal immigration through the cross border exchange of DNA profiles, fingerprints and vehicle registration data. While Prüm offers clear benefits for cross-border policing, it continues to present challenges of a technical and scientific nature as well as legal, ethical and socioeconomic concerns. This article reviews these challenges as well as the existing safeguards. It argues that, in order to achieve Prüm benefits and maximise its potential, it is important to enhance the necessary dialogue and cooperation between member states so as to confront the above concerns and address challenges posed by Prüm through balanced measures

The ethics of uncertainty for data subjects

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard

Forensic DNA databases in European countries: is size linked to performance?

The political and financial investments in the implementation of forensic DNA databases and the ethical issues related to their use and expansion justify inquiries into their performance and general utility. The main function of a forensic DNA database is to produce matches between individuals and crime scene stains, which requires a constant input of individual profiles and crime scene stains. This is conditioned, among other factors, by the legislation, namely the criteria for inclusion of profiles and the periods of time and conditions for their retention and/or deletion. This article aims to provide an overview of the different legislative models for DNA databasing in Europe and ponder if wider inclusion criteria – and, consequently, database size – translates into more matches between profiles of crime scene stains and included individuals (performance ratio). The legislation governing forensic DNA databases in 22 countries in the European Union was analysed in order to propose a typology of two major groups of legislative criteria for inclusion/retention of profiles that can be classified as having either expansive effects or restrictive effects. We argue that expansive criteria for inclusion and retention of profiles do not necessarily translate into significant gains in output performance.MES -Ministry of Education and Science(SFRH/BPD/34143/2006)info:eu-repo/semantics/publishedVersio

Have we seen the geneticisation of society? Expectations and evidence

Abby Lippman’s geneticization thesis, of the early 1990s, argued and anticipated that with the rise of genetics, increasing areas of social and health related activities would come to be understood and defined in genetic terms leading to major changes in society, medicine and health care. We review the considerable literature on geneticization and consider how the concept stands both theoretically and empirically across scientific, clinical, popular and lay discourse and practice. Social science scholarship indicates that relatively little of the original claim of the geneticization thesis has been realised, highlighting the development of more complex and dynamic accounts of disease in scientific discourse and the complexity of relationships between bioscientific, clinical and lay understandings. This scholarship represents a shift in social science understandings of the processes of sociotechnical change, which have moved from rather simplistic linear models to an appreciation of disease categories as multiply understood. Despite these shifts, we argue that a genetic imaginary persists, which plays a performative role in driving investments in new gene-based developments. Understanding the enduring power of this genetic imaginary and its consequences remains a key task for the social sciences, one which treats ongoing genetic expectations and predictions in a sceptical yet open way

Health in a changing climate: Perceptions of 'broken relationships' during COVID-19 in Austria

This article contributes to understanding health in a changing climate by analysing public perceptions of the root causes of the COVID-19 pandemic in Austria. Drawing on 209 in-depth qualitative interviews conducted between April 2020 and October 2021 in a country that was facing significant challenges regarding national climate targets at that time, the study explores how people linked health, nature, and politics during the pandemic. While many initially expressed hope that the COVID-19 Anthropause would catalyse sustainable change, this optimism soon faded. Over the following year and a half, participants increasingly identified the broken relationships between humans, nature, and things as the root cause of overlapping health, environmental, and climate crises. This culminated in a widespread awareness that personal health is inextricably connected to the wellbeing of the natural environment—and that systemic change, though considered unlikely at the time, is necessary to address these intersecting crises. Our findings show strong resonances between Austrian residents’ multidimensional understanding of health in times of climate change and insights from decolonial scholarship, Indigenous people’s knowledges, as well as global majority perspectives. In dialogue with environmental health, Planetary Health, and Indigenous scholarship, we draw out how participants conceived health as a condition shaped by various ‘natural’, biological, ecological, social, political, economic and other dimensions that interact over time and space. Highlighting this perspective from a global minority context raises more far-reaching questions about the need for decolonial repair to address climate-related health impacts

Solidarity and trust in European Union health governance: three ways forward

Trust and solidarity are centrally important to the functioning of healthcare systems, and for societal resilience and stability more broadly. The European Union is increasingly shaping governance and norms that affect trust and solidarity in health—a process that has intensified with the announcement of the ‘European Health Union’ in response to the COVID-19 pandemic. In this context, how can the EU ensure solidarity in health while generating public trust as a pre-condition for solidaristic institutions? We propose three strategies to reach this goal. First, both at national and European levels, institutions and mechanisms of solidarity should be strengthened. Second, the Union should boost the resilience and stability of national healthcare systems through mechanisms of risk-sharing. Third, the Union should mandate or encourage its member countries to enhance prevention and other public health policies to strengthen pre-distribution, aimed to ensure a more equal baseline of public health before inequalities arise

Narratives of Digital Ethics: Agide (Academies for Global Innovation and Digital Ethics) Report

The digital transformation has brought about an unprecedented degree of global interconnectedness, accompanied by increasing efforts to formulate universal ethical guidelines for dealing with emerging digital technologies. The relative ease with which countries around the world seem to agree on universal action-guiding principles of digital ethics along the lines of “fairness”, “transparency”, and “accountability” contrast sharply with the vast differences in technology adoption that we see around the world, and also the vast differences in attitudes towards technology. The project AGIDE, which stands for “Academies for Global Innovation and Digital Ethics”, seeks to explore where differences lie and how these differences might be conceptualized beyond existing stereotypes. To this end, the Austrian Academy of Sciences cooperated with ten other Academies of Sciences from all over the world. Contrary to initial expectations that the differences we see in the perception and governance of digital opportunities and risks might result from discernible differences in emphasis on particular values, the data did not support such distinctions. AGIDE’s research showed that there is a remarkable consistency in core values (such as justice, dignity or privacy), including in their relative weight, across different regions of the world. Major differences, however, seem to lie elsewhere: in the narratives of digital ethics. Narratives are stories that are told repeatedly, consisting of a series of events that are selected and arranged in a particular order, often including central characters (protagonists, antagonists), a conflict, and a plot. It remains unclear, however, whether the narratives are causes or symptoms of the differences we perceive, or both. Thus we need to better understand the factors that contribute to the development of specific narratives, both at the macro and the micro level, and that are conducive to the transformation of established narratives or cause established narratives to resist even major shifts, potentially hindering important policy changes

Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders

This is the author accepted manuscript. The final version is available from SAGE Publications via the DOI in this recordEthical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects.  This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority (HRA), NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifically aimed at researchers/clinicians and members of NHS Research Ethics Committees, and are formulated with the intention to be clear and accessible, both in terms of content and language, to these groups.The project is funded by the Economic and Social Research Council