An analysis of the concept of solidarity from a Dutch and Japanese perspectives:solidariteit and kizuna

The concept of solidarity recently (re)emerged as “new kid on the block” in bioethics. The question is how this concept can be understood in a global perspective as it is intended to be a moral basis for medical research systems, donation systems, and learning health systems. This necessitates an intercultural analysis of the concept of solidarity. To this end, we explored the common ground between understandings in Western Europe and East Asia.We started our ethical inquiry with an examination of the Dutch concept of solidariteit and the Japanese concept of kizuna. Subsequently, we disentangled these understandings and confronted them with each other, particularly on reciprocity as key aspect of solidarity. Lastly, we explored how these insights would impact the biomedical practice of (non)participation in solidarity-based systems.Our analyses revealed that the understandings of solidarity found common ground in the similarity or spiritual bond in a relevant context with other human beings in participation as well as non-participation in these systems. Although most aspects of solidarity were similar, we found differences with respect to the principle of reciprocity. While the concept of kizuna focused commitments on the level of the collective, solidariteit would take into account mainly commitments on the personal level.It is important to acknowledge these differences in reciprocity on a collective and individual level while striving for “health for all in an unequal world” in order to prevent derogation of diversity in the name of equality.<br/

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan : Scoping Review

Hamakawa N, Nakano R, Kogetsu A, Coathup V, Kaye J, Yamamoto BA, Kato K, Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan:Scoping Review, J Med Internet Res 2020;22(8):e16441, DOI: 10.2196/16441, PMID: 32749228, PMCID: 743562

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan : Scoping Review

Background: Information and communication technology (ICT) has made remarkable progress in recent years and is being increasingly applied to medical research. This technology has the potential to facilitate the active involvement of research participants. Digital platforms that enable participants to be involved in the research process are called participant-centric initiatives (PCIs). Several PCIs have been reported in the literature, but no scoping reviews have been carried out. Moreover, detailed methods and features to aid in developing a clear definition of PCIs have not been sufficiently elucidated to date. Objective: The objective of this scoping review is to describe the recent trends in, and features of, PCIs across the United States, the United Kingdom, and Japan. Methods: We applied a methodology suggested by Levac et al to conduct this scoping review. We searched electronic databases—MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase (Excerpta Medica Database), CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Ichushi-Web—and sources of grey literature, as well as internet search engines—Google and Bing. We hand-searched through key journals and reference lists of the relevant articles. Medical research using ICT was eligible for inclusion if there was a description of the active involvement of the participants. Results: Ultimately, 21 PCIs were identified that have implemented practical methods and modes of various communication activities, such as patient forums and use of social media, in the field of medical research. Various methods of decision making that enable participants to become involved in setting the agenda were also evident. Conclusions: This scoping review is the first study to analyze the detailed features of PCIs and how they are being implemented. By clarifying the modes and methods of various forms of communication and decision making with patients, this review contributes to a better understanding of patient-centric involvement, which can be facilitated by PCIs.Hamakawa N, Nakano R, Kogetsu A, Coathup V, Kaye J, Yamamoto BA, Kato K, Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan:Scoping Review, J Med Internet Res 2020;22(8):e16441, DOI: 10.2196/16441, PMID: 32749228, PMCID: 743562

Framework and Practical Guidance for the Ethical Use of Electronic Methods for Communication With Participants in Medical Research

Online communication with participants, including online recruitment, electronic informed consent, and data communication, is one of the fields to which information and communication technology (ICT) has been applied in medical research. Online communication provides various benefits, especially for genome research and rare disease research. However, ethical challenges that are derived from or exacerbated by online communication need to be addressed. Here, we present an overview of such ethical issues and provide practical guidance for the ethical implementation of ICT. We specify the ethical issues in the context of using online communication for medical research by an analysis based on the eight ethical principles for clinical research. Informed by this ethical context, we then develop a novel framework for the governance of medical research involving ICT, which consists of eight categories: five research processes (ie, design of research, recruitment, informed consent, data communication, and dissemination and return of results) and three overarching perspectives related to multiple processes of research (ie, access to research and online dialog, community involvement, and independent review). Finally, we present a practical guidance chart for researchers, patient partners, independent reviewers, and funding agencies. We believe that our study will contribute to the ethical implementation of online communication in medical research

Ethical and Social Issues for Health Care Providers in the Intensive Care Unit during the Early Stages of the COVID-19 Pandemic in Japan : a Questionnaire Survey

Seino, Y., Aizawa, Y., Kogetsu, A. et al. Ethical and Social Issues for Health Care Providers in the Intensive Care Unit during the Early Stages of the COVID-19 Pandemic in Japan: a Questionnaire Survey. ABR (2021). https://doi.org/10.1007/s41649-021-00194-y

Authentication of Patients and Participants in Health Information Exchange and Consent for Medical Research: A Key Step for Privacy Protection, Respect for Autonomy, and Trustworthiness

Genome and other data are already being used in areas including cancer and rare diseases. Data-sharing and secondary uses are likely to become much broader and far more extensive; thus, obtaining proper consent for these new uses of data is an important issue. Obtaining consent through online methods may be an option to overcome the problems associated with one-off, paper-based informed consent. When the process of obtaining consent takes place remotely, authentication must be assured. Patients may also choose to store some of their own information online, such as genetic information, and allow healthcare professionals to access this data. In this health information transfer and exchange process, it is vital that anyone accessing this information be correctly authenticated to protect patients' privacy. In this article, we first clarified that authentication has two roles: i.e., not only to prevent impersonation but also to prove intent, which is a vital step to ensure that medical research and health information exchange are conducted ethically. We then set out methods of authentication. As a result, we were able to make suggestions about the requirements for authentication and a possible method of authentication for these purposes. We considered problems of biometrics and recommended two-factor authentication without biometrics as a workable solution. However, three-factor authentication including biometrics seems likely to be used once biometrics become more common