While everyone has been impacted directly or indirectly by the COVID-19 pandemic and the measures to contain it, not everyone has been impacted in the same way and certainly not to the same degree. Media coverage in early 2020 emphasized the “unprecedented” nature of the pandemic, and some even predicted that the virus could be a global “equalizer.” Ensuing debates over how the pandemic should be handled have often hinged on oppositions between protecting health and healthcare systems versus saving livelihoods and the economy, a dichotomy that we argue is false. Drawing on 482 interviews conducted in Germany, Italy, Ireland, Austria, German-speaking Switzerland and the UK over two points in a 6-month period as part of the ‘Solidarity in times of Pandemics Research Consortium’ (SolPan), we illustrate the ways that oppositions posed between saving lives or saving livelihoods fail to capture the entangled, long-standing nature of structural inequalities that have been revealed through the pandemic. Health- and wealth-related inequalities intersect to produce the “second pandemic,” a term used by a research participant to explain the other forms of devastation that run in parallel with virus. Our findings thus complicate such dichotomies through a qualitative understanding of the pandemic as a lived experience. The pandemic emerges as a critical juncture which, in exacerbating these existing structural inequalities, also poses an opportunity to work to better resolve them.

Since the beginning of the COVID-19 pandemic, research has explored various aspects of face mask use. While most of the research explores their effectiveness to prevent the spread of the virus, a growing body of literature has found that using face masks also has social meaning. But what social meaning does it have, and how does this meaning express itself in people's practice? Based on 413 qualitative interviews with residents in five European countries (Austria, Belgium, Germany, Ireland, and Switzerland), we found that the meanings of face masks have changed drastically during the first months of the pandemic. While in spring 2020 people wearing them had to fear stigmatization, in autumn of 2020 not wearing masks was more likely to be stigmatized. Throughout the first year of the pandemic, we found that mask wearing had multiple and partly seemingly contradictory meanings for people. They were perceived as obstacles for non-verbal communication, but also a way to affirm friendships and maintain social contacts. They also signaled specific moral or political stances on the side of face mask wearers and non-wearers alike, expressed their belonging to certain communities, or articulated concern. In sum, our findings show how face masks serve as scripts for people to navigate their lives during the COVID-19 pandemic. We conclude that public and political discussions concerning face masks should include not only evidence on the epidemiological and infectiological effects of face masks, but also on their social meanings and their social effects.

Public perceptions of COVID-19 vaccines are critical in reaching protective levels of herd immunity. Vaccine skepticism has always been relatively high in Germany, and surveys suggest that over the course of the pandemic, enthusiasm for the COVID-19 vaccine has dropped. Looking at the period just prior to the approval of the Pfizer/BioNTech and Moderna vaccines in Germany in the latter half of 2020, this paper aims to assess the reasons for and against COVID-19 vaccine uptake among residents of Germany, and to provide in-depth qualitative data to better understand and address concerns surrounding the safety and efficacy of a COVID-19 vaccine. Our findings indicate that there is widespread trust in German institutions and health experts to provide a safe vaccine for those who need it most. However, interviewees also point to the need for more information and the centrality of support from trusted medical authorities in making individual vaccination decisions. We also present the complexity of individual positions on vaccination, and suggest that vaccine hesitancy in relation to COVID-19 needs to be understood as a nuanced, and socially malleable, territory. This indicates that the goal of a vaccination campaign is not only achieving ‘herd immunity,’ but also a social endorsement of the collaborative effort that is required for a vaccine to be successful.

Background In the COVID-19 pandemic, Switzerland introduced broad nationwide face mask mandates only by October 2020, later than other Western European countries. This study aims to assess the underlying values and considerations of individuals to wear face masks in the absence of face mask mandates in the COVID-19 pandemic in German-speaking Switzerland. Methods As part of the “Solidarity in times of a pandemic” (SolPan) research commons, we interviewed 31 participants living in the German-speaking part of Switzerland in April 2020 and 25 of them again in October 2020. Qualitative inductive thematic analysis was applied for data analysis and interpretation. Public health ethics principles guided the interpretation and organization of findings. Results Five themes were identified: Trust and governmental policy; perceived benefits of mask-wearing; perceived risks of mask-wearing; social exclusion and prejudice; and decision-making in the absence of mandates. In light of increasing infection rates in October 2020, many participants started to consider the benefits higher than the risks and were willing to accept face mask mandates in that context, despite earlier reservations. Conclusions The absence of face mask mandates underline individual autonomy but may also suppress personal responsibility due to social influence. Face masks are only temporarily acceptable in liberal Western societies and face mask mandates should be enforced only when epidemiologically necessary.

Background The number of market approvals of orphan medicinal products (OMPs) has been increasing steadily in the last 3 decades. While OMPs can offer a unique chance for patients suffering from rare diseases, they are usually very expensive. The growing number of approved OMPs increases their budget impact despite their low prevalence, making it pressing to find solutions to ethical challenges on how to fairly allocate scarce healthcare resources under this context. One potential solution could be to grant OMPs special status when considering them for reimbursement, meaning that they are subject to different, and less stringent criteria than other drugs. This study aims to provide a systematic analysis of moral reasons for and against such a special status for the reimbursement of OMPs in publicly funded healthcare systems from a multidisciplinary perspective. Results With a systematic review of reasons, we identified 39 reasons represented in 243 articles (scientific and grey literature) for and against special status for the reimbursement of OMPs, then categorized them into nine topics. Taking a multidisciplinary perspective, we found that most articles came from health policy (n = 103) and health economics (n = 49). More articles took the position for a special status of OMPs (n = 97) than those against it (n = 31) and there was a larger number of reasons identified in favour (29 reasons) than against (10 reasons) this special status. Conclusion Results suggest that OMP reimbursement issues should be assessed and analysed from a multidisciplinary perspective. Despite the higher occurrence of reasons and articles in favour of a special status, there is no clear-cut solution for this ethical challenge. The binary perspective of whether or not OMPs should be granted special status oversimplifies the issue: both OMPs and rare diseases are too heterogeneous in their characteristics for such a binary perspective. Thus, the scientific debate should focus less on the question of disease prevalence but rather on how the important variability of different OMPs concerning e.g. target population, cost-effectiveness, level of evidence or mechanism of action could be meaningfully addressed and implemented in Health Technology Assessments.

No abstract

Full ectogenesis as the complete externalization of human reproduction by bypassing the bodily processes of gestation and childbirth can be considered the culmination of genetic and reproductive technologies. Despite its still being a hypothetical scenario, it has been discussed for decades as the ultimate means to liberate women from their reproductive tasks in society and hence finally end fundamental gender injustices generally. In the debate about the application of artificial wombs to achieve gender equality, one aspect is barely mentioned but is of crucial relevance from a medical‐ethical perspective: whether and how could full ectogenesis be justified as a proper use of medicine? After characterizing the technology as a special form of human enhancement and as an extension of medical practice that goes beyond the traditional field of medicine, this paper critically assesses the theoretical possibilities of legitimizing this extension. We identify two ways of justification: either one argues that ectogenesis fulfils a proper goal of medicine (a justification we call pathologization), or one argues that the application of ectogenesis achieves a non‐medical goal (which we call medicalization). Because it is important from a medical‐ethical point of view to avoid an inappropriate instrumentalization or misuse of medicine and thus an undue medicalization of non‐medical problems, a set of necessary conditions has to be met. It is doubtful whether full ectogenesis for non‐medical purposes could fulfil these conditions. Rather, its comprehensive usage could be seen as a revolutionary modification of what it means to be human.

Background The use of genome-wide sequencing in pediatric medicine and research is growing exponentially. While this has many potential benefits, the normative and empirical literature has highlighted various ethical issues. There have not been, however, any systematic reviews of these issues. The aim of this systematic review is to determine systematically the spectrum of ethical issues that is raised for stakeholders in in pediatric genome-wide sequencing. Methods A systematic review in PubMed and Google Books (publications in English or German between 2004 and 2021) was conducted. Further references were identified via reference screening. Data were analyzed and synthesized using qualitative content analysis. Ethical issues were defined as arising when a relevant normative principle is not adequately considered or when two principles come into conflict. Results Our literature search retrieved 3175 publications of which 143 were included in the analysis. Together these mentioned 106 ethical issues in pediatric genome-wide sequencing, categorized into five themes along the pediatric genome-wide sequencing lifecycle. Most ethical issues identified in relation to genome-wide sequencing typically reflect ethical issues that arise in general genetic testing, but they are often amplified by the increased quantity of data obtained, and associated uncertainties. The most frequently discussed ethical aspects concern the issue of unsolicited findings. Conclusion Concentration of the debate on unsolicited findings risks overlooking other ethical challenges. An overarching difficulty presents the terminological confusion: both with regard to both the test procedure/ the scope of analysis, as well as with the topic of unsolicited findings. It is important that the genetics and ethics communities together with other medical professions involved work jointly on specific case related guidelines to grant the maximum benefit for the care of the children, while preventing patient harm and disproportionate overload of clinicians and the healthcare system by the wealth of available options and economic incentives to increase testing.