Justice and the racial dimensions of health inequalities: A view from COVID-19.

In this paper, we take up the call to further examine structural injustice in health, and racial inequalities in particular. We examine the many facets of racism: structural, interpersonal and institutional as they appeared in the COVID-19 pandemic in the UK, and emphasize the relevance of their systemic character. We suggest that such inequalities were entirely foreseeable, for their causal mechanisms are deeply ingrained in our social structures. It is by recognizing the conventional, un-extraordinary nature of racism within social systems that we can begin to address socially mediated health inequalities.

Digitally supported public health interventions through the lens of structural injustice: The case of mobile apps responding to violence against women and girls.

Mobile applications (apps) have gained significant popularity as a new intervention strategy responding to violence against women and girls. Despite their growing relevance, an assessment from the perspective of public health ethics is still lacking. Here, we base our discussion on the understanding of violence against women and girls as a multidimensional, global public health issue on structural, societal and individual levels and situate it within the theoretical framework of structural injustice, including epistemic injustice. Based on a systematic app review we previously conducted, we evaluate the content and functions of apps through the lens of structural injustice. We argue that technological solutions such as apps may be a useful tool in the fight against violence against women and girls but have to be situated within the broader frame of public health that considers the structural dimensions of such violence. Ultimately, the concerns raised by structural injustice are-alongside key concerns of safety, data privacy, importance of human supportive contact, and so forth-crucial dimensions in the ethical assessment of such apps. However, research on the role and relevance of apps as strategies to address the structural and epistemic dimensions of violence remains scarce. This article aims to provide a foundation for further discussion in this area and could be applicable to other areas in public health policy and practice.

Segmenting communities as public health strategy: a view from the social sciences and humanities.

On the 5th of May 2020, a group of modellers, epidemiologists and biomedical scientists from the University of Edinburgh proposed a "segmenting and shielding" approach to easing the lockdown in the UK over the coming months. Their proposal, which has been submitted to the government and since been discussed in the media, offers what appears to be a pragmatic solution out of the current lockdown. The approach identifies segments of the population as at-risk groups and outlines ways in which these remain shielded, while 'healthy' segments would be allowed to return to some kind of normality, gradually, over several weeks. This proposal highlights how narrowly conceived scientific responses may result in unintended consequences and repeat harmful public health practices. As an interdisciplinary group of researchers from the humanities and social sciences at the University of Edinburgh, we respond to this proposal and highlight how ethics, history, medical sociology and anthropology - as well as disability studies and decolonial approaches - offer critical engagement with such responses, and call for more creative and inclusive responses to public health crises.

Charting Regulatory Stewardship in Health Research: Making the Invisible Visible.

This section focuses on the ethical, legal, social, and policy questions arising from research involving human and animal subjects.

Reconfiguring Social Value in Health Research Through the Lens of Liminality.

Despite the growing importance of 'social value' as a central feature of research ethics, the term remains both conceptually vague and to a certain extent operationally rigid. And yet, perhaps because the rhetorical appeal of social value appears immediate and self-evident, the concept has not been put to rigorous investigation in terms of its definition, strength, function, and scope. In this article, we discuss how the anthropological concept of liminality can illuminate social value and differentiate and reconfigure its variegated approaches. Employing liminality as a heuristic encourages a reassessment of how we understand the mobilization of 'social value' in bioethics. We argue that social value as seen through the lens of liminality can provide greater clarity of its function and scope for health research. Building on calls to understand social value as a dynamic, rather than a static, concept, we emphasize the need to appraise social value iteratively throughout the entire research as something that transforms over multiple times and across multiple spaces occupied by a range of actors.

Beyond regulatory compression: confronting the liminal spaces of health research regulation.

Biomedicine and the life sciences continuously rearrange the relationship between culture and biology. In consequence, we increasingly look for a suitable regulatory response to reduce perceived uncertainty and instability. This article examines the full implications of this 'regulatory turn' by drawing on the anthropological concept of liminality. We offer the term 'regulatory compression' to characterise the effects of extant regulatory approaches on health research practices. With its focus on transformation and the 'in-between', liminality allows us to see how regulatory frameworks rely on a silo-based approach to classifying and regulating research objects such that they: (1) limit the flexibility necessary in clinical and laboratory research; (2) result in the emergence of unregulated spaces that lie between the bounded regulatory spheres; and (3) curtail modes of public participation in the health research enterprise. We suggest there is a need to develop the notion of 'processual regulation', a novel framework that requires a temporal-spatial examination of regulatory spaces and practices as these are experienced by all actors, including the relationship of actors with the objects of regulation.

A priority paper for the societal and ethical aspects of synthetic biology.

As synthetic biology develops into a promising science and engineering field, we need to have clear ideas and priorities regarding its safety, security, ethical and public dialogue implications. Based on an extensive literature search, interviews with scientists, social scientists, a 4 week long public e-forum, and consultation with several stakeholders from science, industry and civil society organisations, we compiled a list of priority topics regarding societal issues of synthetic biology for the years ahead. The points presented here are intended to encourage all stakeholders to engage in the prioritisation of these issues and to participate in a continuous dialogue, with the ultimate goal of providing a basis for a multi-stakeholder governance in synthetic biology. Here we show possible ways to solve the challenges to synthetic biology in the field of safety, security, ethics and the science-public interface.

Ethical norms and the international governance of genetic databases and biobanks: findings from an international study.

This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers' use of samples obtained from biobanks; (3) what constitutes "collective consent" to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices.

SYNBIOSAFE e-conference: online community discussion on the societal aspects of synthetic biology.

As part of the SYNBIOSAFE project, we carried out an open electronic conference (e-conference), with the aim to stimulate an open debate on the societal issues of synthetic biology in a proactive way. The e-conference attracted 124 registered participants from 23 different countries and different professional backgrounds, who wrote 182 contributions in six different categories: (I) Ethics; (II) Safety; (III) Security; (IV) IPR; (V) Governance and regulation; (VI) and Public perception. In this paper we discuss the main arguments brought up during the e-conference and provide our conclusions about how the community thinks, and thinks differently on the societal impact of synthetic biology. Finally we conclude that there is a chance for an open discourse on the societal issues of synthetic biology happening, and that the rules to govern such a discourse might be set up much easier and be respected more readily than many would suggest.