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BackgroundThe main German-speaking countries (Germany, Austria, and Switzerland) have implemented digital contact tracing apps to assist the authorities with COVID-19 containment strategies. Low user rates for these apps can affect contact tracing and, thus, its usefulness in controlling the spread of the novel coronavirus. ObjectiveThis study aimed to assess the early perceptions of people living in the German-speaking countries and compare them with the frames portrayed in the newspapers during the first wave of the COVID-19 pandemic. MethodsWe conducted qualitative interviews with 159 participants of the SolPan project. Of those, 110 participants discussed contact tracing apps and were included in this study. We analyzed articles regarding contact tracing apps from 12 newspapers in the German-speaking countries. ResultsStudy participants perceived and newspaper coverage in all German-speaking countries framed contact tracing apps as governmental surveillance tools and embedded them in a broader context of technological surveillance. Participants identified trust in authorities, respect of individual privacy, voluntariness, and temporary use of contact tracing apps as prerequisites for democratic compatibility. Newspapers commonly referenced the use of such apps in Asian countries, emphasizing the differences in privacy regulation among these countries. ConclusionsThe uptake of digital contact tracing apps in German-speaking countries may be undermined due to privacy risks that are not compensated by potential benefits and are rooted in a deeper skepticism towards digital tools. When authorities plan to implement new digital tools and practices in the future, they should be very transparent and proactive in communicating their objectives and the role of the technology—and how it differs from other, possibly similar, tools. It is also important to publicly address ethical, legal, and social issues related to such technologies prior to their launch.

Summary: 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.

Abstract Background Genetic diagnosis is often understood as a single event within the care pathway of rare disease patients. Legal, policy and ethical scholarship focusing on rare diseases and genetic information discusses questions of how to best deal with the process of genetic diagnosis and the communication of genetic information within a given health system. We co-created a research design with rare disease patients and their families in Austria to explore in-depth the experiences of genetic diagnosis for people affected by rare diseases. Our objective was to trace the whole pathway of genetic testing and understand how rare disease patients experience genetic diagnosis as part of their care pathway in the healthcare system. Results Data was collected through in-depth semi-structured qualitative interviews with 14 patients with a suspected or diagnosed rare disease or their parents, focusing on their perception of the pathway of genetic diagnosis in Austria. This pathway included the initial triggering of genetic diagnosis, the process of testing and its immediate (communication of results, counselling) and long-term, wider aftermath. Patients missed a clear link to already established forms of care such as their primary care/treating physicians. They also advocate for an integrated and interdisciplinary care pathway. Conclusions Our study underscores the importance of a continuous care and communication pathway spanning from the initial genetic diagnosis process to post-test phases. It further shows the importance of exploring patients’ perspectives through qualitative research methods to understand the intricate workings of public health policies and tools. Integrating genetic diagnosis into a broader care trajectory is crucial for a holistic approach to care for rare disease patients who often rely on regular interactions with the healthcare system. Achieving this holistic approach requires collaboration between experts in specific rare disease areas, primary care physicians, and support networks.

In this Commentary, we argue that in line with the dramatic increase in the collection, storage, and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to address the dual objectives of enabling wide access while protecting against possible harms. However, there are ongoing debates in the scientific community about the merits and limitations of different governance frameworks in achieving these twin aims; and indeed, best practices and points for consideration are notably absent when it comes to devising a governance framework for genomic databases. Based on our collective experience of devising and assessing governance frameworks, our Commentary identifies five key functions of “good governance” (or what makes “better governance”) and three areas where trade-offs should be considered when specifying policies within those functions. We apply these functions as a benchmark to describe, as an example, the governance frameworks of six large-scale international genomic projects.

Die Digitalisierung bringt neben vielen Vorteilen für die sozialwissenschaftliche Forschung und die Lehre auch neue Herausforderungen mit sich. Die Weiterentwicklung digitaler Datenerhebungs- und Analyseverfahren zur Analyse und Gestaltung gesellschaftlicher und politischer Transformationsprozesse muss im Fokus der Zukunftsausrichtung sozialwissenschaftlicher Hochschullehre und Forschung stehen. Neue Datenformate und Praktiken erfordern neue forschungsethische und datenschutzrechtliche Praktiken und Standards. Im Zentrum von Computational Social Science steht die juristisch und ethisch fundierte, reflektierte Nutzbarmachung von digitalen Forschungsdaten und Analyseverfahren und ihre Vermittlung.

The sociology of expectations has helped academics and policy analysts to understand how socio-technical imaginaries are not only hypothetical and “in the future”, but how they create realities in the present. They do so by shaping what gets funded, who gets hired, and even how people lead their lives as they consider some futures more likely than others. While this focus on the performative power of specific visions and expectations has been hugely important, there is another situation that has arguably been at least equally impactful on the present: the absence of (alternative) expectations of the future. It is the absence of specific imaginations of the future that people deem desirable that explains why, despite being fully aware of political and economic practices and arrangements that are detrimental for human and planetary health, we have not changed these arrangements.