Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...) the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages and analysed with qualitative content and thematic analysis. Results Four (...) key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective. (shrink)

Given the sordid history of injustices linking genetics to race and ethnicity, considerations of justice are central to ensuring the responsible development of precision medicine programmes around the world. While considerations of justice may be in tension with other areas of concern, such as scientific value or privacy, there are also tensions between different aspects of justice. This paper focuses on three particular aspects of justice relevant to this precision medicine: social justice, distributive justice and human rights. We describe the (...) implications of each for the use of race and ethnicity in precision medicine, and also how they intersect and potentially conflict with each another. By attending to these intersections, we aim to enrich and add nuance to debates over how best to proceed with precision medicine initiatives. (shrink)

Because of cultural differences between East and West, any attempt at outright adaptation of Western ideas in Asia will undoubtly encounter problems, if not rejection. Transferring an idea from one place to another is just like transplanting an organ from a donor to a recipient—rejection is to be expected. Human cultures respond to new ideas from different value systems in very much the same way.Recently, biomedical ethics has received much attention in Asia. Fundamental advances in medicine have motivated medical scientists (...) to look at the ethical issues arising from this progress. Will the principles upheld by the bioethicists in the West meet the challenge in Asia? This article argues that Asian bioethicists must develop a bioethics responding to their own cultural contexts. If Western principles are adopted, then they must be re-interpreted and even modified, if necessary, in light of Asian beliefs. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Tourism, as an industry, has become one of the most dynamic sectors of the world economy these days and has specific features that are different from other industries. In the tourism industry, production and consumption points occur spatially at the same time. In addition, the tourism industry contributes to the economic growth of developed regions and can simultaneously distribute the wealth created geographically. It is notable that the coronavirus disease 2019 (COVID-19) pandemic has caused many challenges in the tourism industry (...) regarding the presence of tourists in tourism centres and the closing of all tourism service chains, including food, entertainment, transportation and travel services worldwide. Tourism-related businesses, which are considered as invisible export and one of the engines of development and occupation, have been rendered obsolete. In other words, the businesses, as well as multiple units and activities in the related chain, have been damaged and employees of this industry have lost their jobs. This has led to the recession and regressive course of the developing and large industry of tourism in the world. It is worth noting that the tourism industry includes various sections, the most important of which is religious tourism. All religions in the world have different religious places, works, traditions and customs, which have become amongst the most important tourist attractions. Meanwhile, Muslims and the religion of Islam play a significant role in this branch of tourism. The Hajj, pilgrimage to holy places and the existence of mourning ceremonies or religious celebrations of Muslims are amongst the largest religious tourism events in the world. Given the importance of this issue, the present study aimed to evaluate the impact of the COVID-19 pandemic on religious tourism in Iraq in 2021. This field study was conducted on 4500 Muslim managers and staff of restaurants, hotels, grocery stores, clothing stores and souvenir shops around the holy shrines of imams and religious places in Karbala, Najaf, Kufa, Samarra and Kazemi. According to the results, the tourism of Iraq, which is mainly limited to Muslim religious sites in several major Iraqi cities, has also seen a decline in the number of religious tourists. The negative effects of COVID-19 on religious tourism have also been proved statistically by the Statistical Package for the Social Sciences (SPSS), as µ ≥ 3 has been counted in all indices.Contribution: Our findings offered new insights into the impact of COVID-19 on tourism, based on statistical analysis. In this study, the authors showed how COVID-19 affects various aspects of religious tourism, which has not been addressed in previous researches. (shrink)

Because of cultural differences between East and West, any attempt at outright adaptation of Western ideas in Asia will undoubtly encounter problems, if not rejection. Transferring an idea from one place to another is just like transplanting an organ from a donor to a recipient—rejection is to be expected. Human cultures respond to new ideas from different value systems in very much the same way.Recently, biomedical ethics has received much attention in Asia. Fundamental advances in medicine have motivated medical scientists (...) to look at the ethical issues arising from this progress. Will the principles upheld by the bioethicists in the West meet the challenge in Asia? This article argues that Asian bioethicists must develop a bioethics responding to their own cultural contexts. If Western principles are adopted, then they must be re-interpreted and even modified, if necessary, in light of Asian beliefs. (shrink)

Children’s early science interest begins well before middle school, and parents can be important in generating and sustaining such interest. This qualitative study addresses how parental occupations shape physical scientists’ early science interest. Our framework uses Social Cognitive Career Theory, and our research question is, “How do parental occupations create learning opportunities for children and motivate them to pursue physical science?” We examine interviews from 17 physical scientists in Project Crossover, a sequential mixed-methods study that broadly examines factors influencing entry (...) into physics and chemistry doctoral programs. Parental occupations can create learning opportunities through role modeling, encouragement, exposure, familiarity, and bonding. Thus, parents can be valuable in creating learning opportunities for children outside classrooms. Study limitations include a small sample and lack of information about familial structure. Our research contributes to the emergent understanding of the role of parental occupations in science interest, which further influences individual career trajectories. (shrink)

The ethics of betel nut use in Taiwan are examined in this article. It first presents scientific facts about the betel quid, its consumption and negative health consequences and then analyses the cultural background and economic factors contributing to its popularity in Asia. Governmental and institutional attempts to curb betel nut cultivation, distribution and sales are also described. Finally, the bioethical implications of this often ignored subject are considered.

For a putative knower S and a proposition P , two types of skepticism can be distinguished, depending on the conclusions they draw: outer skepticism , which concludes that S does not know that P , and inner skepticism , which concludes that S does not know whether P . This paper begins by showing that outer skepticism has undesirable consequences because that S does not know that P presupposes P , and inner skepticism does not have this undesirable consequence (...) since that S does not know whether P does not presuppose P . We indicate that the two types of skepticism aim to different loci of doubts: while outer skepticism doubts whether we can gain an epistemic warrant for the actuality, inner skepticism doubts whether we can gain epistemic identification of the actuality. It is further indicated that responses to skepticism from externalist theories, as well as from fallibilist internalist theories, can only respond to outer skepticism but not to inner skepticism. (shrink)

This article addresses the ethics of betel nut use in Taiwan. It first presents scientific facts about the betel quid and its consumption and the generally accepted negative health consequences associated with its use: oral and esophageal cancer, coronary artery disease, metabolic diseases, and adverse effects in pregnancy. It then analyzes the cultural background and economic factors contributing to its popularity in Asia. The governmental and institutional attempts to curb betel nut cultivation, distribution, and sales are also described. Finally, the (...) article analyzes the bioethical implications of this often-ignored subject from the perspectives of human dignity, the good of health, vulnerable groups, cultural diversity, informed consent, and ethical blind spots. (shrink)

According to a familiar reading of Kant, he denies the possibility alleged by the rationalists of our having non-sensible or intellectual intuition. I argue in this article that he simply holds the possibility to be groundless. To put the contrast in terms of a distinction Kant makes in the A-Paralogisms, he raises a “dogmatic” objection to the rationalists in the former case, and a “critical” one in the latter. By analyzing the two-step argument in the B-Deduction, I defend the “critical” (...) reading, which may, I hope, shed light on how Kant can justify his claim – which may be regarded as a second-order, methodological one pivotal to his Critical project – that possible experience serves as the only guideline for proving that we can cognize objects a priori. (shrink)

ObjectivesThis paper aims to identify potential areas for refinement in existing theoretical models of suicide, and introduce a new integrative theoretical framework for understanding suicide, that could inform such refinements.MethodsLiterature on existing theoretical models of suicide and how they contribute to understanding psychological processes involved in suicide was evaluated in a narrative review. This involved identifying psychological processes associated with suicide. Current understanding of these processes is discussed, and suggestions for integration of the existing literature are offered.ResultsExisting approaches to understanding (...) suicide have advanced the current knowledge of suicide in various ways. They have guided valuable research in the following areas: motivations for suicide and the psychological distress which influences suicide attempts; ambivalence about suicide; suicidal individuals’ focus of attention; and ways in which individuals who contemplate suicide differ from individuals who attempt suicide. We outline a new theoretical framework as a means to integrating all of these concepts into the three principles of control, conflict, and awareness. Within this framework, suicide is regarded as occurring due to a long standing conflict between an individual’s personal goals, culminating in an episode of acute loss of control. The new framework posits that the individual then strives to regain control through the means of suicide because of a narrowed awareness of consequences of their actions on other valued goals. This psychological mechanism of limited awareness is posited to be the common pathway by which individuals make a suicide attempt, regardless of which risk factors are present.ConclusionThis article introduces a theoretical framework that generates several hypotheses for future research, and focuses on psychological processes occurring during immediate crisis. One of the key hypotheses resulting from our predictions on how individuals progress from contemplating to attempting suicide will be tested in an ongoing program of research: Individuals who attempt suicide have a significantly reduced awareness of consequences of suicide, which would negatively impact on their important life goals, values, principles, or ideals, compared to individuals who contemplate suicide. Therapy guided by the new framework may be more flexible, immediate, and client-focused than other therapies for suicidal individuals. (shrink)

With the rapid development of biotechnology, the physician is now more able to keep a patient's life going indefinitely on a life support system. The question of whether we should switch off the machine often arises when, according to the medical prognosis, there is no hope of recovery, or in a no-win situation where you are 'damned if you do and damned if you don't'. In a case which seems without hope, the dilemma of whether to prolong a life or (...) let it go disturbs many people, including health professionals as well as the family of the patient. In this painful situation, an ethics consultant who has received intensive training can help the concerned parties to arrive at what may be the best decision. How do Asians, especially those living in countries influenced by Confucian teachings, reach their answers? Three aspects are usually considered: (1) motivation and situation; (2) reasonableness and propriety; and (3) lawfulness and legality. More specifically, three questions are deliberated, as follows. (1) Where an action has already been taken, what motivated it and in what situation? Or, where a decision has still to be made, what should motivate it, and what are the relevant features of the situation? (2) Was the attempted resolution of the dilemma, or is its prospective resolution, reasonable and in accordance with traditional principles of ethical behaviour? (3) Was the action taken lawful, or would the intended action be lawful? This approach to finding an answer has been practised for centuries in Confucian society. But what is legal may not always be reasonable, what is reasonable may not always be compassionate, and what is compassionate may not always be either legal or reasonable. Principles to guide decision-making are therefore called for. This article, written by Michael Cheng-tek Tai in collaboration with Donald Hill, discusses the Confucian method of solving a problem and examines its principal features and how they are applied in ethics consultations. The article is followed by a series of questions and answers and a commentary by Donald Hill. (shrink)

A non-universal Immediate Dominance Condition on identity deletion is proposed to explain the systematic differences between languages like Chinese and languages like English in their respective patterns of coordination, topicalization, dislocation, and relativization. By assuming that this condition holds for languages of the Chinese-type, but not for those of the English-type, it is possible to account for the well-formed coordinations of all languages by means of a single universal principle of coordination reduction, and it is possible to derive the well-formed (...) topicalizations, dislocations, and relative clause constructions of all languages by means of the same set of universal principles of Copying, Deletion, and Pronominalization. (shrink)

This exploratory qualitative study investigated how doctoral students reported their personal and professional interaction experiences that they believed might facilitate or impede their academic pursuits in biomedical research. We collected 19 in-depth interviews with doctoral students in biomedical research from eight universities, and we based our qualitative analytic approach on the work of Miles and Huberman. The results indicated that among different sources and types of interaction, academic and emotional interactions from family and teachers in various stages essentially affected students’ (...) persistence in the biomedical science field. In addition, co-mentorship among peers, departmental environment, and volunteer experiences were other essential factors. This study also found related experiences among women and underrepresented minority students that were important to their academic pursuit. (shrink)

Research shows that early scientific interest is associated with science degree completion and career selection. However, little is known about the conditions that support early scientific interest. Using a “funds of knowledge” theoretical framework, this study examined the role of parents, family, and extended social networks in fostering early interest in science. Using interview narratives from 116 scientists (physicists and chemists) in the United States, we conducted a qualitative thematic content analysis. Findings suggest that children who become scientists in adulthood (...) often received early, informal opportunities to use and manipulate material objects and discover how the world works. Second, families used a wide variety of scientific terms at home and encouraged children to pursue their interests whether in science or other fields. Third, these future scientists were often networked with extended family members or friends to observe and do science when they were quite young. Collectively, these findings highlight the specific ways in which families fostered early scientific interest and aided in supporting a student-directed learning environment. (shrink)

This chapter presents an interpretation of Kant’s view on public reason. For Kant, reason in its theoretical use is the highest of our mental powers, giving principles for thinking in general that regulate our use of understanding as a faculty of cognition. In its practical use, it is a capacity to set ends to oneself and to pursue them by efficient means. Kant calls reason our “rational nature” and also employs the word ‘humanity’ as a technical term for it. Most (...) importantly, we find him saying toward the end of the Critique of Pure Reason, “The very existence of reason depends on this freedom [to communicate with others], which has no dictatorial authority, but whose claim is never more than the agreement of free citizens, each of whom must be able to express his reservations, indeed even his veto, without holding back”. In other words, for Kant, reason is essentially public. Thus, no philosophy that deserves to be called “Kantian” can be “monological” or “solipsistic,” as Habermas has depicted it. To interpret Kant’s view on public reason is therefore something like exposing the kernel of his entire critical approach to reason, both theoretical and practical. The goal of this chapter is to bring Kant’s view on public reason to bear on our thinking about how controversial bioethical matters in social debate are to be addressed through public deliberation, and what, if any, conditions ought to be designed and instituted under which such deliberation can proceed fairly and thereby achieve reasonable agreement, if not consensus. (shrink)

This book presents the methodological framework of combining Multimodal Conversation Analysis (MCA) with Interpretative Phenomenological Analysis (IPA) to interpretively analyse translanguaging practices in educational contexts. Beginning with an overview of the three uses of translanguaging - translanguaging as a theory of language, as a pedagogical practice and as an analytical perspective - the book goes on to critically examine the different methodological approaches for analysing translanguaging practices in multilingual classroom interactions. It explains how MCA and IPA are useful methodologies for (...) understanding how and why translanguaging practices are constructed by participants in the classroom and discusses types of data collected and data collection procedures. The author, Kevin W. H. Tai, shows how combining these approaches enables researchers to study how translanguaging practices are constructed in multilingual classrooms and how teachers make sense of their own translanguaging practices at particular moments of classroom interaction. This detailed and concise guide is indispensable for students, practitioners, policymakers, and researchers from across the globe, particularly those working in the fields of applied linguistics and language education. (shrink)