This October 2023 issue of Asian Bioethics Review showcases work with a focus on Northeast Asia. We are pleased to present a collection of papers that illustrate multiple ways in which bioethical thinking is having impact in the region and far beyond. The issue contains a mix of papers that offer insights both into the workings of bioethics in practical settings, such as the formulation of ethical guidelines for medical practice and research, as well as into ways in which ideas and values heavily associated with the region have influence on our collective thinking about contemporary bioethical issues.
Before turning to the papers that make up this issue, it is important to give our readers an update on the commitment of the Asian Bioethics Review to matters of equity, diversity and inclusion (EDI). As reported in the July 2023 issue (https://link.springer.com/article/10.1007/s41649-023-00252-7), we have raised EDI with our Board and this has resulted in two concrete next steps. First, we have conducted an EDI survey of our Board membership to inform our practice moving forward; secondly, we are actively engaged in developing a new Editorial Board policy that places EDI firmly at its centre. Full details will be published in due course. As with all questions of EDI, development and change are on-going processes. Accordingly, we will continue to inform readers about progress via future editorials and our journal website (https://www.springer.com/journal/41649).
Our October 2023 issue opens with a letter from Mr Ansari which highlights a very important question in bioethics: Who are the invisible actors behind the machinery of bioethics and whose efforts are often crucial to the success of any biomedical enterprise? (https://link.springer.com/article/10.1007/s41649-023-00255-4). In the present context, one such actor is the Member Secretary (MS) of an ethics committee who works at the interface between the committee, Principal Investigators, research participants, regulators and many other stakeholders in the health research ecosystem. The letter provides a fascinating insight into this multi-faceted—and often conflictual—role. As a result, we are reminded that bioethics is far more than ideals and institutions. Often the ‘success’ of bioethics in delivering safe and effective improvements to human health and the human condition is dependent on the hard work of a handful of individuals who are hidden from view. The edifice may be more precarious than we might realise.
Turning to our contributions with a focus on Northeast Asia, it is important to ask why we dedicate an issue to any such region. It is not our claim, for example, that bioethics is distinctive within the territory in question. Rather, we present papers either from this region or with a focus on bioethics in action in the region to show various ways in which bioethical scholarship in Northeast Asia is making significant contributions to the literature. We leave it to readers to reflect on whether any wider claims can be made.
Our first original article from Takimoto and Shimanouchi explains the development process of ethics guidance for neuroscience research involving mental illness in Japan (https://link.springer.com/article/10.1007/s41649-023-00240-x). The authors were directly involved in the development of this guidance and took as their starting point the US Belmont report and the values and principles contained therein. Unlike the USA, however, Japan has no comprehensive laws dealing with the regulation of medical research and the role of ethical guidance is arguably all the more important as a result. This article is valuable both for its content and for its discussion of process. Albeit that the starting point was a review of neuroethics literature in the Anglo-American region, the final product represents an adaptation of the Belmont principles to the specific research context and contemporary considerations about conducting such research on groups with specific vulnerabilities. Moreover, relational autonomy plays a crucial part in the development process of the guideline. It would be an overreach to suggest that this reflects something particular about the Japanese context (and no such claim is made by the authors). Rather, the paper is illustrative of cross-fertilisation of ideas from different regions of the globe in developing a guideline that is fit for purpose in its given geographical and cultural context.
The next set of papers all present evidence from Japan broadly under the rubric of ‘bioethics in action’. Empirical data is offered on a range of issues, from governance practices of sensitive personal data, to emotional responses to new challenges in bioethics, to expert and stakeholder influences on the development of new technologies.
In Genetic Data Governance in Japanese Hospitals (https://link.springer.com/article/10.1007/s41649-023-00242-9), Yamazaki, Ohnuki and Takeshita present the results of a survey of the management of genetic information in general hospitals in Japan. This is the first nationwide survey since the implementation of electronic medical records. Using a questionnaire method, the paper reports a rich dataset from over 190 hospitals handling genetic data and their associated access arrangements. The evidence shows extreme diversity in approach towards governance practices and, in a parallel with our first paper, the current authors discuss the role of guidelines in Japan suggesting that these have led to access restrictions and an undue fetishisation of genetic data compared to other medical information. As a result, the authors discuss the merits of legal intervention in Japan. They advocate wider discussions about how far, if at all, genetic information should be treated exceptionally, including the need for dialogue with publics.
Public attitudes and awareness in Japan are the focus of our next two papers. It is axiomatic that effective communication of any kind is predicated on proper understanding. In the medical research domain, however, challenges are compounded because technical terminology dominates and this can fundamentally undermine the communication process, such as the taking of valid informed consent. The issues are considered in the paper by Kamisato, Hong and Okubo (https://link.springer.com/article/10.1007/s41649-023-00247-4). Using online surveys, the authors tested the awareness of members of the Japanese public relating to key research terms used frequently in medical research and recruitment. The results were compared with physicians’ predictions of publics’ understanding. The results are illuminating and worrying for the gap that they reveal between publics’ and physicians’ respective positions of understanding. Moreover, given that many of the terms being ‘tested’ are standard in global medical research, the paper lays the groundwork for international research to assess whether similar awareness gaps exist in other countries. The implications are particularly profound for the process of obtaining valid consent to medical research.
In the paper entitled ‘The Ethics of Emotional Artificial Intelligence’, Ghotbi presents evidence from quantitative and qualitative studies that examined both emotions of human beings in action and also human attitudes towards the use of artificial intelligence (AI) to read human emotions (https://link.springer.com/article/10.1007/s41649-022-00237-y). Multiple initiatives are underway to deploy AI in ways that can predict human behaviours based on an understanding of the emotions in play and to apply this to decision-making. And, while the ethics of this remain controversial, we know even less about how publics feel about these kinds of developments. The article reports on research undertaken by the author in a large international university where many students are from Northeast Asia. Two studies were conducted: one focused on the intensity and frequency of emotions felt (or suppressed) by students in response to a survey; the other used an essay competition to reveal attitudes of students towards emotional AI. The author reports that ‘... [t]he correlations found between nationality and emotional variables, especially Japanese vs. Non-Japanese respondents, were so discriminatory that we found it unethical to report them at all’. The discussion explores the wider implications of this conclusion for uses of AI that seek to rely on data about human emotions. Moreover, this first survey is then contrasted with the findings from the essay study that showed a majority of students had favourable attitudes towards emotional AI. A conclusion by the author is that the full ethical implications of this kind of use of AI were not appreciated by the study cohort. This, in turn, points to the need for more research on both the ethics of emotional AI and the need to raise awareness among publics of the potential risks involved.
Our next article by Aikyo, Kogetsu and Kato can be seen as an example of an empirical study involving a health technology that is further down its line of development compared to the last example involving emotional AI. In ‘Stakeholder Involvement in the Governance of Human Genome Editing in Japan’ (https://link.springer.com/article/10.1007/s41649-023-00251-8), the authors acknowledge the active debate on HGE that has taken place since 2015 and seek to contribute to this through an examination of discussions of the Japanese Expert Panel on Bioethics. Here, the research findings focus not on attitudes or perceptions, but rather on the respective roles of key stakeholders in shaping discourse, influencing the governance of emerging technologies, and the particular role of bioethics bodies charged with a function to inform policy and practice. As the authors suggest, the Japanese experience can serve as an illustrative lesson for other countries faced with similar technological developments and governance challenges, including the politics of bioethics that are inevitable in contemporary biomedicine.
Our final three articles examine different aspects of care, providing insights from Northeast Asian perspectives on matters of both theory and practice. Thus, Takeshita et al. report on ethical issues faced by home care physicians and nurses in Japan, focussing on their ethics support needs (https://link.springer.com/article/10.1007/s41649-023-00238-5). The research was conducted in collaboration with the Japanese Association for Home Care Medicine using nationwide email contact with professionals involved in home care. The results report extensively on the ethical issues that arise in practice and the data are particularly revealing about the reliance placed on ethical expertise by professionals in the field. Often, professionals rely on each other for ethical input to resolve dilemmas in practice; the results further reveal considerable support for more formalised mechanisms to train and offer ethical expertise in Japan. Building on training initiatives available to date in Japan and drawing on the ethics consult model from the USA, the authors advocate for ethics support resources to be even more focussed on providing ethics consultation services in the community.
The subsequent paper by Tian, Jotterand and Wango offers a very different kind of insight into care in the field—here, the focus is on caregiving at a distance and the use of remote technologies (https://link.springer.com/article/10.1007/s41649-023-00256-3). Set against the background of international migration and what this means for care duties within families (especially towards members of the older generations), this paper is notable in a number of respects. First, it provides a valuable account of the ethical issues that arise for professionals and families alike when attempting to provide care at a distance. Second, reflecting the theme of the current issue, the paper offers particular insights into filial obligations in this context, a theme that is often discussed in the Northeast Asian context. Finally, the paper advocates for ethically conscious design of remote care technologies. This last point reflects many of the conclusions of earlier papers in this issue that expose ethical issues in the development trajectories of new technologies in biomedicine.
Our final paper focuses directly on care as a duty of healthcare professionals. The language of duty of care is very evocative of Anglo-American legal systems, but its application to bioethics is explored fully in the article by Cong and Dwyer (https://link.springer.com/article/10.1007/s41649-023-00254-5). The authors offer a normative argument in support of a wide-ranging duty of care to provide care and promote health when faced with any number of risks, obstacles and inconveniences. Using the COVID-19 pandemic as a backdrop, the argument that is offered brings together elements of ideas and values with their origins in Northeast Asia, viz the teachings of Mengzi, with influences from the USA and the writings of Dewey. By these means, the paper is a good example of different schools and traditions of thoughts from different regions of the globe coming together to deepen our understanding of common challenges and to offer sustainable ways forward. As the example of a global pandemic makes only too clear, we are more similar for the challenges that we face than for the differences that potentially divide us. As the papers in this issue demonstrate, robust bioethical discussion only helps to re-enforce this lesson.
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