_BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...) its likely impact. Studies must be scientifically valid; for research articles this includes a scientifically sound research question, the use of suitable methods and analysis, and following community-agreed standards relevant to the research field. Specific criteria for other article types can be found in the submission guidelines. _BMC series - open, inclusive and trusted_. (shrink)

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform (...) is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire. The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. (shrink)

In an increasingly globalized world, the accessibility of healthcare and medication has expanded beyond local healthcare systems and national borders. This study aims to investigate the transnational health and self-care experiences of 11 Japanese women who have resided in South Korea for a minimum of six months and have utilized oral contraceptives, including those that were acquired over-the-counter (OTC). Data were gathered through semi-structured interviews and analyzed by utilizing the NVivo software. The analysis yielded three significant thematic categories, namely (1) (...) experiences and perceptions of obtaining and utilizing contraceptive pills, including OTC access; (2) individual and social perceptions of pills and their accessibility in Japan, insights from actual users; and (3) enhancing pill accessibility, transnational health and self-care experiences and perspectives. Participants acknowledged that oral contraceptives are a global product and experienced communication challenges with healthcare providers as a result of differing understandings of these medications. Additionally, this study identified transnational strategies, such as purchasing an adequate supply of pills just before departure and seeking pills from local families or acquaintances. This study not only highlights the implications of clinical care for transnational patients but also underscores their critical global perspectives on access to oral contraceptives. Furthermore, it proposes two models for improving accessibility within the Japanese healthcare system, even in prescription-only contexts, by introducing OTC options. (shrink)

With the development of assisted reproductive technologies, medical, ethical, legal, and social issues have arisen that did not exist when natural conception was the only means of childbirth. In Japan, men tend to believe that assisted reproductive technologies are not directly related to them, with the literature showing that men are often reluctant to be involved in fertility treatment processes. To better understand this situation, this study analyzes the role of male consent during assisted reproductive technology procedures in Japan. First, (...) we examined Japanese court cases that dealt with issues related to male consent during assisted reproductive technology procedures and identified three situations in which problems related to male consent during such procedures may arise. Next, we analyzed the background of such issues and the implications of the lack of consent regarding men’s reproductive rights. Finally, we explored the need for legislation on assisted reproductive technologies. The study concludes that discussions on the scope of male partner rights in assisted reproductive technology procedures are key for minimizing unnecessary conflict between partners, thus ensuring both the rights of women who wish to have children and the welfare of their children. (shrink)

As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than heretofore. These developments present a challenge to the conventional framework of biomedical ethics; under these changing circumstances, each research project has to develop a pragmatic research policy. Based on the experience with a new large-scale project—the Genome Science Project—this article presents a novel approach to conducting a specific policy for personal genome research in (...) the Japanese context. In creating an original informed-consent form template for the project, we present a two-tiered process: making the draft of the template following an analysis of national and international policies; refining the draft template in conjunction with genome project researchers for practical application. Through practical use of the template, we have gained valuable experience in addressing challenges in the ethical review process, such as the importance of sharing details of the latest developments in genomics with members of research ethics committees. We discuss certain limitations of the conventional concept of informed consent and its governance system and suggest the potential of an alternative process using information technology. (shrink)

A challenge in human genome research is how to describe the populations being studied. The use of improper and/or imprecise terms has the potential to both generate and reinforce prejudices and to diminish the clinical value of the research. The issue of population descriptors has not attracted enough academic attention outside North America and Europe. In January 2012, we held a two-day workshop, the first of its kind in Japan, to engage in interdisciplinary dialogue between scholars in the humanities, social (...) sciences, medical sciences, and genetics to begin an ongoing discussion of the social and ethical issues associated with population descriptors. (shrink)

Genome editing is a technology that can accurately and efficiently modify the genome of organisms, including the human genome. Although human genome editing (HGE) has many benefits, it also involves technical risks and ethical, legal, and social issues. Thus, the pros and cons of using this technology have been actively debated since 2015. Notably, the research community has taken an interest in the issue and has discussed it internationally. However, for the governance of HGE, the roles of government agencies and (...) the general public are also important for an effective regulatory system. Here, we examine the roles of the research community, government, and public in the governance of HGE through an analysis of discussions in the Japanese Expert Panel on Bioethics. During the discussion of the research ethics review system, the professionalism of the research community and the pros and cons of state oversight have become issues for debate. Furthermore, through an examination of the overall policy-making process, three stakeholders are clearly involved in the governance of emerging medical technologies in the Expert Panel on Bioethics, a discussion forum established by government agencies. The contrast among these roles provides insight into the positive roles of government agencies and the research community and the conditions under which these roles are played. We also note that there are diverse actors in the public, which may have an impact on their participation. Our results may serve as a guide for countries and organizations to establish governance on emerging medical technologies. (shrink)

It is essential for scientists to introduce their research in a comprehensible manner and to communicate with colleagues in the same/different fields and with the public. As genome research requires the massive expenditure of public funds, and raises ethical, legal, and social issues, genome scientists have communicated extensively with the public. In addition, they have established interdisciplinary collaborations that resulted in the creation of a new research field known as bioinformatics.We examined the history of communication activities involving Japanese genome scientists (...) between 1989 and 2005 using extensive literature surveys and interviews. We found that genome researchers went through much trial and error, particularly with respect to collaborative interdisciplinary efforts, and although they early on recognized the necessity of communicating with colleagues in different fields, it was not until the introduction of a large governmental research budget, the Millennium Project (2000 - 2004), that individual researchers began to be actively engaged in communication activities. In conclusion, to facilitate the participation of scientists in communication activities, researchers who are acquainted with different research fields, community, and society should proactively function as coordinators of interdisciplinary programs or mediators of collaborative research. It is also of primal importance to present to scientists the advantage of dialogue with society scientifically and to design effective communication programs that provide researchers with such opportunities. (shrink)

This questionnaire-based observational study was conducted in July 2020 with the aim of understanding the ethical and social issues faced by health care providers (HCPs) registered with the Japanese Society of Intensive Care Medicine in intensive care units (ICUs) during the coronavirus disease (COVID-19) pandemic. There were 200 questionnaire respondents, and we analyzed the responses of 189 members who had been involved in COVID-19 treatment in ICUs. The ethical and social issues that HCPs recognized during the pandemic were difficulties in (...) the decision-making process with patients’ families, limitations of life-sustaining treatment, lack of palliative care, and inadequate mental support for patients’ families and HCPs. Regarding decision-making on issues of clinical ethics during the pandemic, more than half of the respondents thought they had failed to provide sufficient palliative care to patients and responded that they experienced moral distress. The free-text responses on moral distress revealed issues such as unusual treatment and care, restricted visits, challenging situations for HCPs, and psychological burden. Additionally, 38.1% of respondents experienced episodes of social prejudice or discrimination and 4.7% experienced a shortage of medical resources. Our study result shows that the moral distress of HCPs was caused by difficulties in patient-centered decision-making and insufficient medical care to patients and their families. These were caused mainly by a lack of communication due to the stronger implementation of infection control measures. We believe that it is important to address ethical and social issues during a pandemic in order to provide appropriate medical care and prevent burnout among HCPs. (shrink)

The original article published in volume 10 issue 2 on pp. 143–155 had an error. Table 1 headers “Mobility assistance” and “Automated toilet” were inadvertently removed, while the headers “Movement actuation” and “Conversation partner” were in the wrong columns.

Ambient assisted living technologies are expected to solve a significant number of problems related to elderly care. However, in Japan, limited discourse on the ethical issues concerning their application is hindering the spread of AAL technologies. Against this background, this study explores the ethical perspectives of AAL technology engineers in Japanese companies and the circumstances influencing their perspectives. A qualitative study using semi-structured interviews was conducted. Nineteen Japanese AAL-technology companies were contacted, and nine of them and their engineers responded to (...) the interviews. The contents of the interviews were analyzed with thematic analysis which showed that the engineers had ethical concerns about their products as follows: safety and related conflicts, acceptance of the technology, dependence on the technology, accident liability, fair access to the technologies, and privacy. In relation to these issues, they identified as company employees with regard to the following: responding to social needs, having many users, and cost reduction. They also mentioned being influenced by the Japanese national program for AAL-technology promotion. The engineers experienced dilemmas between the various stakeholders’ interests and they hoped that ethical guidelines for developing AAL technologies would resolve such dilemmas. In conclusion, Japanese AAL-technology engineers tackle ethical issues with regard to the application of their products. The engineers hope for the establishment of guidelines for the ethically responsible development of AAL technologies. The guidelines need to be established and implemented in an interactive manner, in order to avoid their being reduced to a bureaucratic formality. (shrink)