Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond

The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing demand for new forms of informed consent which reflect local contexts. This article analyzes informed consent forms (ICFs) for genomic research formulated by four selected research programs and institutes in East Asia – the Medical Genome Science Program in Japan, Universiti Sains Malaysia Human Research Ethics Committee in Malaysia, and the Taiwan Biobank and the Taipei Medical University- Joint Institutional Review Board in Taiwan. The comparative text analysis highlights East Asian contexts as distinct from other regions by identifying communicative and social functions of consent forms. The communicative functions include re-contact options and offering interactive support for research participants, and setting opportunities for family or community engagement in the consent process. This implies that informed consent cannot be validated solely with the completion of a consent form at the initial stage of the research, and informed consent templates can facilitate interactions between researchers and participants through (even before and after) the research process. The social functions consist of informing participants of possible social risks that include genetic discrimination, sample and data sharing, and highlighting the role of ethics committees. Although international ethics harmonization and the subsequent coordination of consent forms may be necessary to maintain the quality and consistency of consent process for data-intensive international research, it is also worth paying more attention to the local values and different settings that exist where research participants are situated for research in medical genomics. More than simply tools to gain consent from research participants, ICFs function rather as a device of social communication between research communities and civic communities in liaison with intermediary agents like ethics committees, genetic counselors, and public biobanks and databases

A conceptual analysis of public opinion regarding genome research in Japan

In the 20 years since the completion of the Human Genome Project, the gap between scientific development and public understanding of genome research has been widening. While genome research has been increasingly utilized for social and clinical purposes in a multifaceted manner, this has resulted in an increase in the potential risks associated with genomic data. In this context, our study aims to consider the nature of public perceptions of genome research, primarily by using as a case study the results of previous public surveys relevant to donations for social benefits in Japan. We explored certain types of awareness, attitude, and intention (A-A-I) in such surveys and discussed the resultant key findings through the cultural transmission framework. Reframing the public’s response toward genome research based on A-A-I analysis and behavioral science may contribute to developing more systematic communication approaches with the public. With a view to establishing such approaches, our perspective suggests some new insights to discuss the science–society gap in genome research internationally

Assessing Sustainable Regional Energy Systems: A Case Study of Kansai, Japan

4th International Conference on Sustainable Future for Human Security, SustaiN 2013Understanding and assessing sustainable energy systems at various scales are a complex proposition. The task must take into account more than just the technical realm of energy, seeking to model the dynamic interplay between environmental, social and economic systems as they influence and are influenced by the technical energy system. Energy systems are often considered at a coarse level – at the scale of a nation – or at a relatively fine scale – at the technology end. However, scales of governance, institutions and the regional territory of electricity providers (for example) can make for useful scales of analysis. The current paper describes some of the important elements for undertaking co-design and assessment of energy systems for more resilient, desirable and sustainable energy futures. Key steps are described, among which is a novel model of the technical energy system that incorporates local environmental and planetary limitations. The initial model considerations and an analysis of enablers and barriers, as well as the interactions with the scenario development are presented

Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan

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 (MD) 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 (n = 40). 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

Science by, with and for citizens: rethinking ‘citizen science’ after the 2011 Fukushima disaster

Abstract: This study illustrates how citizen-driven radiation monitoring has emerged in post-Fukushima Japan, where citizens generate their own radiation data and measurement devices to provide public with actionable data about their environments. Drawing on ethnographic fieldwork in and around Fukushima Prefecture, it highlights the multifaceted character of these bottom-up, citizen-led efforts, contrasting these initiatives with the emergence of “citizen participatory” science policy discourses in Japan. Recognizing the contested nature of citizenship in Japan and in the nuclear arena, the article considers how terms and definitions shape the participation of citizens and other stakeholders (local communities, public authorities, regulators, and professional scientists) in science and technology in culturally and historically specific ways. It builds on these observations to open up new spaces of expertise, which engage all stakeholders through social-scientific intervention

Energy Efficiency Road Mapping in Three Future Scenarios for Lao PDR

Climate change, pollution, and energy insecurity are among the greatest problems of our time. These problems are no longer issues in particular countries but international issues. Several framework conventions on these issues are now in place throughout the world, and developing countries are no exception. Energy efficiency is one of the important issues for developing countries. Lao PDR is one such country. This paper proposes a technology roadmap and policy recommendations for Lao PDR with consideration given to a wide range of economic and social impacts of prospective technologies. For the implementation of technology assessment in the formulation of an energy efficiency roadmap, we first elaborate the social and economic conditions of Lao PDR through preliminary research and field research, and then design three scenarios for a future Lao PDR. These three scenarios are as follows: 1. The "Poverty Reduction” scenario is for electrification rate improvement; 2. The “Industrial Creation” scenario is for stable domestic energy supply; and 3. The “GMS Integration” scenario is for the acquisition of foreign exchange by energy export

Reconsidering the need for gain-of­ function research on enhanced potential pandemic pathogens in the post-COVID-19 era

The dual-use risk of infectious disease research using enhanced potential pandemic pathogens (ePPP), particularly gain-of-function (GOF) research, has been debated since 2011. As of now, research is supported on the condition that the research plan is reviewed and the actual experiment is supervised. However, the kinds of research conducted and what benefits they have brought to our society have not been adequately verified. Nevertheless, due to the COVID-19 pandemic that began at the end of 2019 and caused numerous deaths and wide economic disruption, the importance of infectious disease control from an international perspective has been recognized. Although complete control of the pandemic is still far off, positive signs include generating epidemiological trends based on genome analysis, therapeutic drug and vaccine development, clinical patient management, and public health policy interventions. In this context, the time has come to reconsider the true significance of GOF research on ePPP and the state of research governance in the post-COVID-19 era. In particular, the risks of such research are clearer than before, whereas its benefits seem less apparent. In this paper, we summarize the history of discussions on such GOF research, its significance in the light of the current COVID-19 pandemic, and the direction we shall take in the future

Proposals for future governance of GOF research of the kind that creates ePPPs

Public comments for the NSABB meeting, January 25, 2023, with titled paper "Proposals for future governance of GOF research of the kind that creates ePPPs