Inclusion and Exclusion in Bioethics

The first two papers of this July 2023 issue of the Asian Bioethics Review highlight issues that should concern all of us in academic publishing — the lack of diversity and inclusion in editorial boards in leading journals. The evidence that is presented suggests that this leads not only to inequities in representation but also to a real risk of exclusion of research from the public domain, which is highly relevant to the health and well-being of the majority of the global population.

Our first article by Manan et al. (https://link.springer.com/article/10.1007/s41649-023-00243-8) focuses on global health journals. The authors undertook research to explore diversity and inclusion in the leadership and management of key journals in the field. Data were gathered on gender, geography, and socioeconomic status, and from this, the authors developed a journal diversity index (JDI). The results make compelling and troubling reading on every analysis of the rich information that is provided; notably, only 2 out of 43 journals scored “excellent” on the index, and the inevitable conclusion is that “…marginalized individuals, and their perspectives remain underrepresented in that field.” However, evidence from our second article suggests that this is a far more wide-spread phenomenon of exclusion. Focussing on leading obstetrics and gynaecology journals, Rawat et al. (https://link.springer.com/article/10.1007/s41649-023-00241-w) present data of a similar nature showing very poor representation of low- and low-middle income countries on editorial boards in that particular domain, with only 9 out of 21 journals having editorial board members from these countries. Of even greater concern, the evidence suggests “…a limited contribution to the total research output in leading obstetrics and gynaecology journals by researchers from the developing world.” In this respect and on other parameters identified in these articles, these contributions represent a call to all of us involved in academic publishing to reflect and act. Both articles make concrete suggestions for action, such as more transparency in editorial appointments, more effort to support representation of marginalised communities, and more to promote research involvement. And while journals and editorial boards alone cannot bring about the full gamut of systemic changes required to remedy these inequities, they can begin by reflecting and acting on their own roles and responsibilities as part of the problem. For our part on the Asian Bioethics Review, we have taken the issues raised in these papers to our Editorial Board and we will report in due course on what action we believe might be required for this journal.

Our next two papers make novel contributions to our understandings of the on-going impacts of the COVID-19 pandemic. Both articles focus on the challenges of vaccination in extremely adverse circumstances, or rather of being excluded from vaccine programmes. Korolchuk et al. examine vaccination in Ukraine in the aftermath of the invasion by Russia (https://link.springer.com/article/10.1007/s41649-023-00248-3). Mass migration of people led to further spread of the virus, while infrastructural breakdown, redistribution of resources and priorities, and the overall conditions of war meant that, for many, access to vaccines and healthcare personnel became extremely difficult or impossible. As well as providing a crucially important account of Ukraine’s social and public health experiences during such a period of extreme crisis, the authors offer valuable insights into the impact on what they call value orientations, which they defined as dispositions of social behaviour which become highly disrupted in the context of war. The discussion and analysis offer insights into the impact of citizens’ attitudes towards vaccination during such times and the factors that dispose people either towards or away from vaccination. The findings have import not just for a country at war but also to inform policies to prepare countries and citizens for future public health emergencies.

An inevitable consequence of social crisis such as that currently happening in Ukraine is that significant numbers of people will be unvaccinated. The understanding of what this means is complemented by the paper by Ramiro Avilés and De Miguel Beriain who examine categories of non-vaccinated people and their relationships with being vulnerable (https://link.springer.com/article/10.1007/s41649-022-00232-3). The discussion examines the category of persons who cannot be vaccinated for clinical reasons and the category of persons who refuse vaccination. The authors posit that through such classification, their research can reveal deeper social issues. The common bioethical question that arises is as follows: how should society face the reality of different groups having different immunity status from the majority that is vaccinated? The ethical issues and the divergent approaches that are possible are the focus of this article. The authors develop the idea of “organic disability,” being a concept linked to living with a deficiency in a person’s immune system associated with non-access to a COVID-19 vaccine. On this basis, the argument is made that both groups experience organic disability and it is not a phenomenon that is (yet) recognised by international instruments like the International Convention on the Rights of Persons with Disabilities (CRPD). The normative argument is, simply, that society ought to recognise such a form of disability.

The theme of disability is continued in the paper by Thiagesan, Gopichandran, and Soundari, which offers an ethical framework to address barriers to healthcare for people living with disabilities in India (https://link.springer.com/article/10.1007/s41649-023-00239-4). After giving an account of the range of ways in which persons living with disabilities experience difficulties and challenges within a healthcare system, the authors provide a helpful breakdown of categories of barrier and how these might inform future policy and practice. Ultimately, the core contribution of this article lies in the ethical framework that is offered and in which the authors identify the issues, possible solutions, ethical principle(s) underlying the solution(s), and, importantly, a recommendation as to which body or institution should take action. This last point is particularly valuable because too often ethical frameworks are rich in content but speak into a void. No such criticism could be made here.

The article by Rachmawati, Hasanbasri, and Hakimi shifts focus from the patient to the professional (https://link.springer.com/article/10.1007/s41649-023-00245-6). The topic is the role of professional virtues when treating patients with chronic spinal cord injury (CSCI) in Indonesia. The nature of this complex condition means that physician–patient relationships are often longer term. The authors undertook empirical research to explore the nature of this relationship further, notably by asking both groups —physicians and patients — about which virtues inform practice and treatment, especially fairness. The article reports the findings, and these suggest significant difference in understandings, perceptions, and attitudes. The wider implications for fostering inclusive relationships between physicians and their patients deserve further exploration.

In Islamic Perspectives on Elective Ovarian Tissue Freezing by Single Women for Non-medical Reasons, the authors — Chin, Muhsin, and Ahmad — explore diverse interpretations of Islamic laws and maxims in various countries regarding this practice (https://link.springer.com/article/10.1007/s41649-022-00236-z). They contrast an account of underlying principles that inform fatwas in some countries with other interpretations as to the permissibility of this technique in this particular context. Ultimately, the call is for more dialogue to include a wider range of voices, including medical doctors and biomedical scientists. The opportunity to include bioethicists in this on-going conversation should also not be overlooked.

Our final paper is by Browning and Veit in which they continue international dialogue about the importance and challenges of recognising animal sentience (https://link.springer.com/article/10.1007/s41649-023-00244-7). In the wake of a recent wide-ranging review by Rowan et al. (2021) examining the history of animal sentience and the impacts of this framing on politics and policy, the authors challenge some of the assumptions underlying concerns about measuring the subjectivity of feelings and the very use of such language, arguing that a focus on the causal effects of feelings can contribute greatly to the task of measuring sentience and making meaning from what evidence is available to us.

A common theme uniting many of the papers in this issue is inclusion or rather how easy it is to exclude rather than to find ways to include. In various ways, we have a range of examples calling for more imaginative, purposive, and principled ways to include more persons and animals in all aspects of our social enterprise.

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