Engaging citizens with digital technology to co-create data, information and knowledge has widely become an important strategy for informing the policy response to COVID-19 and the ‘infodemic’ of misinformation in cyberspace. This move towards digital citizen participation aligns well with the United Nations’ agenda to encourage the use of digital tools to enable data-driven, direct democracy. From data capture to information generation, and knowledge co-creation, every stage of the data lifecycle bears important considerations to inform policy and practice. Drawing on (...) evidence of participatory policy and practice during COVID-19, we outline a framework for citizen ‘e-participation’ in knowledge co-creation across every stage of the policy cycle. We explore how coupling the generation of information with that of social capital can provide opportunities to collectively build trust in institutions, accelerate recovery and facilitate the ‘e-society’. We outline the key aspects of realising this vision of data-driven direct democracy by discussing several examples. Sustaining participatory knowledge co-creation beyond COVID-19 requires that local organisations and institutions incorporate adaptive learning mechanisms into their operational and governance structures, their integrated service models, as well as employing emerging social innovations. (shrink)

This paper examines the construction of maternal responsibility in transgenerational epigenetics and its implications for pregnant women. Transgenerational epigenetics is suggesting a link between maternal behaviour and lifestyle during pregnancy and the subsequent well-being of their children. For example, poor prenatal diet and exposure to maternal distress during pregnancy are linked to epigenetic changes, which may cause health problems in the offspring. In this field, the uterus is seen as a micro-environment in which new generations can take shape. Because epigenetics (...) concerns how gene expression is influenced by the social realm, including a range of environmental conditions such as stress, diet, smoking, exercise, exposure to chemicals, pollution, and environmental hazards, the research findings in this area have direct policy relevance. For policy makers, rather than controlling this complex range of determinants of health, isolating and targeting maternal body and responsibilising mothers for the control of this micro-environment might seem feasible. Yet, examining the maternal body in isolation as a powerful environment to shape the health of next generations not only responsibilises women for the environment that they cannot control but also makes them a target for intrusive and potentially exploitative biomedical interventions. Even though ‘social factors’ are increasingly considered in epigenetics writing, the phrase is usually taken as self-explanatory without much elaboration. Drawing on the Covid-19 pandemic, this paper moves the current debate forward by providing consolidated examples of how individuals, including pregnant women, have little control over their environment and lifestyle. As evidenced by the pandemic’s disproportionate effects on people with low socioeconomic or poor health status, some pregnant women bore considerable physical and psychological stress which combined with other stress factors such as domestic violence. (shrink)

Human heritable genome editing (HHGE) involves editing the genes of human gametes and/or early human embryos. Whilst ‘identity’ is a key concept underpinning the current HHGE debate, there is a lack of inclusive analysis on different concepts of ‘identity’ which renders the overall debate confusing at times. This paper first contributes to reviewing the existing literature by consolidating how ‘identity’ has been discussed in the HHGE debate. Essentially, the discussion will reveal an ontological and empirical understanding of identity when different (...) types of identity are involved. Here, I discuss genetic, numerical, qualitative and narrative and how each of them is relevant in the HHGE context. Secondly, given the different types of identity, the paper explores how we could navigate these different interpretations of identity in a way that promotes an inclusive and informed discussion between primary stakeholders and the general public in the HHGE debate. Here, I argue for and refine a multi-faceted concept of identity as a suitable framework for discussing the ethical and societal implications of HHGE because it not only could integrate different understandings of identity but also highlight the interconnectedness between these different understandings. (shrink)

Background: Healthcare professionals follow codes of ethics, making them responsible for providing holistic care to all disaster victims. However, this often results in ethical dilemmas due to the need to provide rapid critical care while simultaneously attending to a complex spectrum of patient needs. These dilemmas can cause negative emotions to accumulate over time and impact physiological and psychological health, which can also threaten nurse–patient relationships. Aim: This study aimed to understand the experience of nurses who cared for burn victims (...) of the color-dust explosion and the meaning of ethical relationships between nurse and patient. Research design: A qualitative descriptive study using a phenomenological approach. Participants and research context: Clinical nurses who provided care to the patients of the Formosa color-dust explosion of 2015 were selected by purposive sampling from a medical center in Taiwan. Data were collected using individual in-depth semi-structured interviews. Audiotaped interviews were transcribed and analyzed using Colaizzi’s method. Ethical considerations: This study was approved by the institutional review board of the study hospital. All participants provided written informed consent. Findings Three main themes described the essence of the ethical dilemmas experienced by nurses who cared for the burn-injured patients: the calling must be answered, the calling provoked my feelings, and the calling called out my strengths. Conclusions: Healthcare providers should recognize that nurses believed they had an ethical responsibility to care for color-dust explosion burn victims. Understanding the feelings of nurses during the care of patients and encouraging them to differentiate between the self and the other by fostering patient–nurse relationships based on intersubjectivity could help nurses increase self-care and improve patient caregiving. (shrink)