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ELSI refers to “ethical, legal, and social issues/implications” of science and technology (S&T). The term has been gaining currency in Japan over the last 15 years in the context of its national S&...

Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people’s intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered. This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus.

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. Research for this project received support through a Bilateral Joint Research Agreement between the Research Fund - Flanders (FWO) and the Japanese Society for the Promotion of Science (JSPS) (VS05517N). Fieldwork reported in this study was realized in the framework of a PhD at SCK CEN and KU Leuven. The second author’s work is funded by the European Commission’s Horizon 2020 MSCA-IF-2018 research funding scheme (grant number 836989).

The COVID-19 crisis has further highlighted the challenges for open science and data sharing in biomedical research and the need for more traceability and transparency.

Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

Over the last decade Japanese researchers have taken the lead in the emerging discipline of molecular robotics. This new technology aims to produce artificial molecular systems that can adapt to changes in the environment, self-organize and evolve. This paper explores the question of how to stimulate responsible research and innovation in the field of molecular robotics technologies. For this, we first draw lessons from earlier societal responses in Japan to emerging technologies, such as genetic engineering, nanotechnology, synthetic biology and genomic research. Next we describe various real-time technology assessment (TA) activities on molecular robotics in Japan to depict the state-of-the-art of the academic and public debate on the social aspects of molecular robotics. Lessons from earlier societal responses to emerging technologies demonstrated three potential challenges: finding and involving the ‘right’ experts and stakeholders, keeping regulations up to date, and getting scientists and citizens involved in science communication. A literature review, ‘future workshop’ and scenario workshop raised a number of ethical, social, political and cultural issues, and addressed desirable and undesirable scenarios for the next few decades. Twitter text mining analysis indicates that the level of attention, knowledge and awareness about molecular robots among a broader audience is still very limited. In conclusion, we identify four activities crucial to enable responsible innovation in molecular robotics—getting to grips with the speed of the development of molecular robotics, monitoring related technical trends, the establishment of a more stable TA knowledge base, and a sustained interaction between molecular roboticists and social scientists.

The concept of resilience is a crucial part in crafting visions of desirable futures designed to withstand the widest variety of external shocks to the system. Backcasting scenarios are widely used to envision desirable futures with a discontinuous change from the present in mind. However, less effort has been devoted to developing theoretical frameworks and methods for building backcasting scenarios with a particular focus on resilience, although resilience has been explored in related sustainability fields. This paper proposes a method that helps design backcasting scenarios for resilient futures. A characteristic of the method is to delineate “collapse” futures, based upon which resilient futures are described to avoid the various collapsed states. In the process of designing backcasting scenarios, fault tree analysis (FTA) is used to support the generation of various risk factors and countermeasures to improve resilience. In order to test the effectiveness of the proposed method, we provide a case study to describe resilient energy systems for a Japanese community to 2030. Four expert workshops involving researchers from different disciplines were organized to generate diversified ideas on resilient energy systems. The results show that three scenarios of collapsed energy systems were described, in which policy options to be taken toward achieving resilient energy systems were derived.

Synthetic biology and genome editing have become increasingly controversial issues, necessitating careful attention and engagement with the public. Our study examined ambiguity in public perception about emerging biotechnologies through the use of several intermediate response options in a survey. To understand the relationship between respondents’ thoughts and attitudes, we also examined how respondents’ indecision is related to their cognitive concept of “self” as well as their interpretation of “future generations.” An online survey of 994 respondents living in Japan revealed that around 80% hold intermediate attitudes (two-sided, non-judgmental, or reserved attitudes) toward synthetic biology and genome editing. These results revealed that respondents who have a narrow self-concept tend to postpone decisions about the application of emerging technologies. In contrast, those with a broad self-concept tend to adopt an ambivalent attitude and are more short-sighted, but make judgments based on the impact of their decisions on current and future generations. This study thus demonstrates that public views are more diverse and nuanced than those obtained from conventional public surveys for policy making. This research was supported by RISTEX, Japan Science and Technology Agency (JST).

Interest in climate engineering research has grown rapidly owing to the slow progress of international climate negotiations. As some scientists are proposing to expand research and conduct field tests, there is an emerging debate about whether and how it should proceed. It is widely accepted both by the supporters and critics that public engagement from the early stage of research is necessary. Nonetheless, most, if not all, of existing research projects of climate engineering were designed predominantly by experts. To produce socially relevant knowledge, and hence, pursue transdisciplinary research that integrates interdisciplinary research and public engagement, it is desirable for scientists to decide together with the public on what kind of research should be done. In this paper, we both as Japanese scientists and stakeholders collaboratively identify 40 socially relevant research questions on climate engineering with a particular emphasis on stratospheric aerosol injection, using a method designed to encourage science–policy collaboration. While we acknowledge some methodological problems and the difficulty in obtaining active participation from stakeholders, the list of identified questions covers broad interdisciplinary perspectives and diverse interests, and may provide an important foundation for future transdisciplinary research on climate engineering. Given the dynamic nature of climate change and policy responses, research agendas should be periodically and iteratively reviewed and updated through transdisciplinary processes.

Policymakers and scholars have employed technology assessment to formulate and deliberate policy and social agendas by anticipating plausible futures for the last half century. Proposing a reflexive hermeneutics approach and taking a case of synthetic biology, this study illustrates how TA discourses are socioculturally and institutionally bounded. The case study leads to the conclusion that future-oriented conceptions of the ‘precautionary’ and ‘proactionary’ intertwine with general concepts including biosafety, biosecurity, bioeconomy, and biodiversity. These general concepts together with the advent of disruptive innovation in synthetic biology have already affected perception of possible futures.

I remember vividly an academic conference on a certain field of natural science several years ago. The final claim in my presentation was that it was necessary to foresee and counteract hype in sci...

This paper is a reflective account of a public participation project the authors conducted in Japan in 2012–2015, as part of the central government’s initiative for evidence-based policy-making. The reflection focusses on three key aspects of the project: setting a precedent of involving public participation in policy-making; embedding an official mechanism for public participation in policy-making process; and raising policy practitioners’ awareness of public participation. We also discuss why we think engaging with policy practitioners, while problematic in various ways, is and will continue to be important in promoting institutionalised practice of public participation. The PESTI project (October 2012 to September 2015) was funded by the Research Institute of Science and Technology for Society of the Japan Science and Technology Agency, under one of its funding programmes titled “Science of Science, Technology and Innovation Policy”.

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 analyses informed consent forms 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, informed consent forms 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.

Understanding 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.

Background 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. Methods 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. Results 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. Conclusion 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. Electronic supplementary material The online version of this article (doi:10.1186/s12910-016-0132-2) contains supplementary material, which is available to authorized users.

Technology assessment has come into the spotlight several times since the 1970s, but serious misinterpretations caused by the ideas of engineering orientation, safety myth and self-management have impeded its effective societal embedding. Even in this post-3/11 period, thesemisinterpretations are implied in the current science and technology policy plan and suggested as causes of the nuclear accident in the interim report of the governmental investigation committee. In thinking about the future nuclear governance in Japan, wider participation is a key to opening up the closed expert community and escaping from the shortsightedness of nuclear governance. Careful attention should be paid, however, as ever, to simply setting up an “independent” organization and/or conducting participatory events such as public forums and consensus conferences. Individual connections, cognitions and commitments of a diverse range of participants incorporated into institutional and managerial reform can, instead, be seen as a hope for restoring anticipatory energy governance while preventing another severe nuclear disaster in the future.

Studies on synthetic biology have been promoted in many countries to find a solution to the proposition “what is life?”; this is done not by analytical but by constructive methods, or to create the systems of living organisms for human use. Synthetic biology is supposed to be a useful tool for solving various problems that humans have; however, it could lead to many ethical challenges, particularly problems in terms of disaster prevention, such as the question whether the artificial creation of life is right or wrong and concerns about the creation of organisms that may be harmful for humans and the environment. This paper summarizes the social and scientific trends in the field of synthetic biology, especially in Japan, for clarifying the related social problems and bringing these problems to the attention of the stakeholders and public.

The nuclear accident at Tokyo Electric Power Co (TEPCo)’s Fukushima Daiichi Nuclear Power Plant on March 11, 2011, triggered by the Great East Japan Earthquake and subsequent Tsunami, is probably the worst “catastrophic technological risk” ever experienced by Japan. Whether this serious accident could have been prevented or managed better is the key question that we need to pursue. Technology Assessment (TA), which is intended to help decision making by assessing possible societal impacts of particular technology, can play significant role in managing catastrophic technological risks by providing an objective assessment of technological risks before it happens, while it is happening and even after the accident. In this special issue on TA, we are fortunate to have papers and reviews from both distinguished experts as well as young scholars. The variety of the subject is also very useful to see how TA can be applied under the different situations. In particular, in the post 3.11 society, we believe it is a good occasion to consider institutionalization of TA in Japan.

Even though the TA has not been institutionalized in Japan, there have been many TA and TA- like activities, in areas including food, healthcare, energy and technology strategy, since the idea of TA was introduce from the US. This paper analyzes the nature and limits of those TA and TA like activities; and the lessons for institutionalization of TA in the context of Japan are discussed, including the need for flexible framing and collaboration, the importance of appropriate distance, and the role of the Diet‥

This paper illuminates widening variety of technology assessment (TA) activities by parliamentary organizations and other bodies in the United States and Europe. It also illustrates a range of institutional options for TA from the view of its key elements, and examines the operational issues. Based on extensive interviews with TA practitioners and other related actors, we identified the recent direction of TA activities and provide discussion materials for states and regions in which there is a growing concern about the institutionalization of TA functions.

In environmental, health, and safety issues of nanotechnology (nanoEHS), at present, risk assessment and management of nanomaterials to protect workers, consumers, and the environment is the most urgent. Workers have the highest possibility of being exposed to nanomaterials in workplaces, where nanomaterials may be inhaled or enter the body through dermal exposure. Several kinds of in-vivo tests have been done to assess the hazards of nanomaterials, mainly in terms of immunity response and carcinogenicity. Most advanced countries agree that it is important to manage the risks of nanomaterials with using the existing framework for chemical substances as much as possible to minimize risks, product of hazard and exposure. Research papers on the hazards of nanomaterials have been increasing, but there have been comparatively little scientific data related to exposuremeasurement. The Japanese government and national research institutes have been proactively committed to this issue since 2004. In addition to supporting several domestic projects, the Japanese government proactively joined international bodies such as the OECD Working Party on Manufactured Nanomaterials and ISO TC-229. Still, much more scientific data in appropriate studies and more discussion by appropriate participants are needed although funding is limited. To improve the situation, proposals have included (1) promoting basic research on nanoEHS, (2) increasing opportunities for scientific discussion on nanoEHS, (3) working continuously to construct and maintain databases on nanoEHS, (4) promoting the involvement of multistakeholders in nanoEHS, and (5) having ministries working cooperatively and efficiently on nanoEHS.

A value-centered approach to science, technology and society (STS) education illuminates the need of reflexive and relational learning through communication and public engagement. Visualization is a key to represent and compare mental models such as assumptions, background theories and value systems that tacitly shape our own understanding, interests and interactions. Yet conventional approaches including concept mapping and multi-criteria value elicitation methods often have little suggestion or implication as to how participants themselves can address and deliberate the incompatibility of their perceptions, preferences and perspectives. This study proposes Q workshop as a legitimate eliciting and deliberation technique that can be employed in pluralistic discourse, exploring systematic divergences of perspective by constructing the participant‘s self in a formative, emergent and contingent manner. For this it introduces Q mapping as a novel visualization tool for the hybridity of qualitative and quantitative methods derived from Q methodology. Q mapping is a two-factor solution that transforms the similarities in participants’ individual Q scores into distances represented in two-dimensional space, for the sake of illustrating the relative positioning and partitioning of perspectives in a schematic figure. A case study on STS education for postgraduate students demonstrates that Q workshop can play a heuristic and abductive role in providing independent illumination of distinguishable perspectives and facilitating individual and collective learning among participants, suggesting a schematic two-dimensional basis for resolving the key differences.

Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the ‘ELSI 2.0’ initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries.