Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

Emerging infectious diseases such as Ebola, Hendra, SARS, West Nile, Hepatitis E and avian influenza have led to a renewed recognition of how diseases in human beings, wildlife and livestock are interlinked. The changing prevalence and spread of such infections are largely determined by human activities and changes in environment and climate—where the latter are often also caused by human activities. Since the beginning of the 21st century, these insights have been brought together under the heading of OneHealth—a concept that (...) calls for interdisciplinary collaboration between various sciences as well as professional practices to promote and protect the health of human and non-human animals and the natural environment. Just as insights from public health have led to a broadened focus for health policy and medical care, from treating individual patients to protecting and promoting population health, OneHealth calls for an even broader perspective, including a concern for the environment and animals, and for social-cultural factors that affect human, animal and environmental health. OneHealth not only covers collaborative work to understand and control zoonotic diseases, but also other ways in which interactions between animals, plants and humans may positively or negatively impact on each other’s health. Thus, studies in veterinary medicine and environmental sciences may lead to new insights in human medicine, and vice versa. Acknowledgment of the links between environmental, animal and social health is of course not a novel insight. Hippocrates already pointed to the importance of a clean environment as a requirement for good health; the early public health movements emphasized hygienic living conditions including good-quality housing, sewage systems and clean air and water; and the founders of modern medicine such as William Osler and Rudolf Virchow promoted …. (shrink)

This article addresses an important, overlooked regulatory challenge during global health emergencies. It provides novel insights into how, and why, best practice can support decision makers in interpreting and implementing key guidance on conducting research during GHEs. The ability to conduct research before, during and after such events is crucial. The recent West-African Ebola outbreaks and the Zika virus have highlighted considerable room for improvement in meeting the imperative to research and rapidly develop effective therapies. A means of effectively capturing (...) these experiences and folding them into future decision-making is lacking; the need for effective practical translational measures remains. The challenge for the research community lies in extracting meaningful action-guiding content from pre-existing guidelines—which draw upon practical examples of guidelines ‘in action’—that assist in determining how to act in a particular situation. Insights are provided into the role of best practice as a means to do so; such examples can provide invaluable support to decision makers in interpreting high-level guidance; overarching guidelines retain their necessary level of generality and flexibility, whilst corresponding best practice examples—which incorporate important lessons learned—illustrate how such guidelines can be interpreted at a practical level. (shrink)

Public health decisions made by the state involve considerable disagreements on the course of actions, uncertainties, and compromises that arise from moral tensions between the demands of civil liberties and the goals of public health. With such complex decisions, it can be extremely difficult to arrive at and justify the best option. In this article, we propose an ethical decision-making framework based on the philosophy of Ubuntu and argue that in sub-Saharan African settings, this approach provides attractive alternative conventions of (...) moral decision-making and a useful language for understanding moral reasoning and ethics. Through its emphasis on humanity, compassion, and social responsibility, Ubuntu (“I am because we are”) has the potential to facilitate solutions to and avert conflicts between individual rights and public health. The use of Ubuntu shifts the moral reasoning and ethics of decision-making from a field of philosophy shaped by the global north, to the everyday values, decision-making, and consequent practices of people in much of Africa. Using examples of Ebola, pandemic influenza, and tuberculosis, we illustrate how Ubuntu can be applied to tackle conflicting ethical problems in public health and medicine. (shrink)

Some ethicists assert that there is a consensus that maximising medical outcomes takes precedence as a principle of resource allocation in emergency triage of absolutely scarce resources. But the nature of the current severe acute respiratory syndrome-related coronavirus 2 pandemic and the history of debate about balancing equity and efficiency in resource allocation do not support this assertion. I distinguish a number of concerns with justice and balancing considerations that should play a role in critical care triage policy, focusing on (...) discrimination and on fundamental egalitarian and social justice concerns. (shrink)

The events surrounding COVID-19, combined with the mandatory quarantines widely imposed in Asia and Europe since the virus outbreak, have reignited discussion of the balance between individual rights and liberties and public health during epidemics and pandemics. This article analyses this issue from the perspectives of precaution and necessity. There is a difficult relationship between these two seemingly opposite principles, both of which are frequently invoked in this domain. Although the precautionary principle encourages the use of quarantines, including mandatory quarantines, (...) and associated restrictive measures, the principle of necessity puts a break on such measures. The COVID-19 pandemic reveals once again the different interrelations between these two principles. However, the alleged conflict between the PN and the PP is based on a superficial analysis. The relation between these two principles is far more complex, as this article will demonstrate. (shrink)

Although employed throughout health-related rhetoric and research today, prevention it is an ambiguous and complicated category when applied to mental and behavioral health. It is analyzed here, along with four ethical issues arising when public health preventative methods and goals involve mental health: age of intervention; resource priorities between prevention and treatment; substantive issues in preventive pedagogies and trade-offs framed by differences of approach. Illustrations include some of the most widespread and ambitious recent preventive models: those aiming to avert subsequent (...) mood disorders of depression and anxiety; those that would curb self-harming behavior, and efforts to anticipate and avoid or delay psychosis. To suppose that public mental health can be entirely modeled on other public health programs is mistaken. Instead, it must proceed with awareness of the particular features typifying many mental disorders. These include features of the disorders themselves; the preliminary nature of scientific knowledge about them; the contested applicability of traditional disease models to them; the dearth of established research data available about preventive interventions currently in place or proposed; and the effects of stigma and discrimination on any such interventions. (shrink)

Verbal autopsy presents the opportunity to understand the disease burden in many low-income countries where vital registration systems are underdeveloped and most deaths occur in the community. Advances in technology have led to the development of software that can provide probable cause of death information in real time, and research considering the ethical implications of these advances is necessary to inform policy. Our research explores these ethical issues in rural Nepal using a public health ethics framework. We considered the burdens (...) and benefits of VA and giving cause of death information to families of the deceased through qualitative research with VA interviewers, community members, national policy stakeholders and international academics. Burdens can be experienced differently, and it is important to balance the emotional burden of VA with utilization of the data to inform planning and increased access to health services. The training, support and supervision of VA interviewers should be prioritized if VA is taken to scale. Initial and ongoing community engagement is recommended in addition to engaging ethical, legal, health and policy personnel in developing protocols and systems. Integrating rigorous research while cautiously moving forward is recommended to ensure systems and responses to concerns are relevant to contexts. (shrink)

Emerging infectious diseases remain a significant and dynamic threat to the health of individuals and the well-being of communities across the globe. Over the last decade, in response to these threats, increasing scientific consensus has mobilised in support of a One Health approach so that OH is now widely regarded as the most effective way of addressing EID outbreaks and risks. Given the scientific focus on OH, there is growing interest in the philosophical and ethical dimensions of this approach, and (...) a nascent OH literature is developing in the humanities. One of the key issues raised in this literature concerns ethical frameworks and whether OH merits the development of its very own ethical framework. In this paper, we argue that although the OH approach does not demand a new ethical framework, an OH approach does furnish the theoretical resources to support a novel ethical framework, and there are benefits to developing one that may be lost in its absence. We begin by briefly explaining what an OH approach to the threats posed by EIDs entails before outlining two different ways of construing ethical frameworks. We then show that although on one account of ethical frameworks there is no need for OH to generate its own, there may be advantages for its advocates in doing so. (shrink)

Effectiveness is a key criterion in assessing the justification of antibiotic resistance interventions. Depending on an intervention’s effectiveness, burdens and costs will be more or less justified, which is especially important for large scale population-level interventions with high running costs and pronounced risks to individuals in terms of wellbeing, integrity and autonomy. In this paper, we assess the case of routine hospital screening for multi-drug-resistant Gram-negative bacteria (MDRGN) from this perspective. Utilizing a comparison to screening programs for Methicillin-Resistant Staphylococcus aureus (...) (MRSA) we argue that current screening programmes for MDRGN in low endemic settings should be reconsidered, as its effectiveness is in doubt, while general downsides to screening programs remain. To accomplish justifiable antibiotic stewardship, MDRGN screening should not be viewed as a separate measure, but rather as part of a comprehensive approach. The program should be redesigned to focus on those at risk of developing symptomatic infections with MDRGN rather than merely detecting those colonised. (shrink)

Some theorists argue that moral bioenhancement ought to be compulsory. I take this argument one step further, arguing that if moral bioenhancement ought to be compulsory, then its administration ought to be covert rather than overt. This is to say that it is morally preferable for compulsory moral bioenhancement to be administered without the recipients knowing that they are receiving the enhancement. My argument for this is that if moral bioenhancement ought to be compulsory, then its administration is a matter (...) of public health, and for this reason should be governed by public health ethics. I argue that the covert administration of a compulsory moral bioenhancement program better conforms to public health ethics than does an overt compulsory program. In particular, a covert compulsory program promotes values such as liberty, utility, equality, and autonomy better than an overt program does. Thus, a covert compulsory moral bioenhancement program is morally preferable to an overt moral bioenhancement program. (shrink)

Crutchfield (Crutchfield in Bioethics 33:112–121, [4]) has argued that if moral bioenhancement (MBE) ought to be compulsory, then it ought to be covert. More precisely, they argue that MBE is a public health intervention, and for this reason should be governed by public health ethics. Taking from various public health frameworks, Crutchfield provides an array of values to consider, such as: utility, liberty, equality, transparency, social trust, and autonomy. Subsequently, they argue that a covert MBE programme does better than an (...) overt one, in preserving or promoting said values, and hence, that a covert MBE is preferable. In this paper, I will provide novel reasons to doubt that the relevant values are in fact better promoted or preserved by a covert MBE programme. Additionally, I will provide a novel autonomy-based consideration which counts in favour of the MBE programme being overt, rather than covert. Given that as things currently stand it is unclear which kind of MBE programme is preferable, the upshot of my criticism of Crutchfield will be to provide some recommendations as to how we might proceed in establishing whether a covert or overt MBE programme fares better. (shrink)