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“Looking at the Big Picture”: A Qualitative Study of Ethics in Science Communication and Engagement
Ethical issues arise in many communication and engagement settings. Such issues can, however, fall into the gaps between what is seen as “research” and what is seen as “dissemination.” Semi-structured interviews (n = 17) and focus groups (n = 2) with researchers and science communication and public engagement specialists at U.K. academic institutions and in practice settings suggest that while normative principles for ethical science communication remain fluid, ethical questions are often an area of considerable reflection for those communicating, particularly when they reflect wider social issues and different people in the process: communities, researchers, and institutions.
When to create embryos or organoids for research.
The development of brain organoids and use of human embryonic neural structures for research each raise distinct ethical considerations that require careful analysis. We propose that rather than attempting to resolve longstanding debates about embryonic moral status, a more productive approach is to examine how different positions on this fundamental question lead to distinct conclusions about appropriate research strategies. For those who ground moral status in species membership or developmental potential, even early-stage embryo research may be ethically impermissible, suggesting focus on carefully bounded organoid development. Conversely, for those who ground moral status in current capacities, embryonic neural tissue studied before the emergence of consciousness may offer significant advantages over organoids while raising fewer novel ethical concerns. Our analysis reveals inadequacies in current policies, particularly the 14-day rule, which appears difficult to justify under either ethical framework. We demonstrate how careful attention to the relationship between ethical premises and research implications can advance both scientific progress and ethical oversight, while suggesting specific policy reforms including capacity-based research guidelines and sophisticated monitoring protocols.
Rethinking our Assumptions about Moral Status
Recent technological developments and potential technological developments of the near future require us to try to think clearly about what it is to have moral status and about when and why we should attribute moral status to beings and entities. What should we say about the moral status of human non-human chimeras, human brain organoids, artificial intelligence, cyborgs, post-humans, and human minds that have been uploaded into a computer, or onto the internet? In this introductory chapter we survey some key assumptions ordinarily made about moral status that may require rethinking. These include the assumptions that all humans who are not severely cognitively impaired have equal moral status, that possession of the sophisticated cognitive capacities typical of human adults is necessary for full moral status, that only humans can have full moral status, and that there can be no beings with higher moral status than ordinary adult humans. We also need to consider how we should treat beings and entities when we find ourselves uncertain about their moral status.
Rethinking Moral Status
Common-sense morality implicitly assumes that reasonably clear distinctions can be drawn between the ‘full’ moral status usually attributed to ordinary adult humans, the partial moral status attributed to non-human animals, and the absence of moral status, usually ascribed to machines and other artefacts. These assumptions were always subject to challenge; but they now come under renewed pressure because there are beings we are now able to create, and beings we may soon be able to create, which blur traditional distinctions between humans, non-human animals, and non-biological beings. Examples are human non-human chimeras, cyborgs, human brain organoids, post-humans, human minds that have been uploaded into computers and onto the internet, and artificial intelligence. It is far from clear what moral status we should attribute to any of these beings. While commonsensical views of moral status have always been questioned, the latest technological developments recast many of the questions and raise additional objections. There are a number of ways we could respond, such as revising our ordinary suppositions about the prerequisites for full moral status. We might also reject the assumption that there is a sharp distinction between full and partial moral status. The present volume provides a forum for philosophical reflection about the usual presuppositions and intuitions about moral status, especially in light of the aforementioned recent and emerging technological advances.
Early experiences of the End of Life Choice Act 2019 amongst assisted dying practitioners in Aotearoa New Zealand.
BACKGROUND: The global trend of legalising assisted dying (AD) has reshaped end-of-life care practices, and Aotearoa New Zealand's adoption of the End of Life Choice Act (the Act) in 2019 represents a significant shift. Limited empirical research on AD in New Zealand after the enactment of the Act underscores the need for investigation. Conducting research in the early stages of AD implementation is crucial to building a strong knowledge base and laying the foundation for future research. This would ensure equitable and suitable service provision for the service users. AIM: This research captured the experiences of health practitioners directly involved in providing AD under New Zealand's End of Life Choice Act 2019. DESIGN: Using the "memorable case" approach, 22 participants reflected on the process of assessing, treating, and delivering AD services in the first 12 months of implementing the new AD law. RESULTS: Thematic analysis identified four major themes underlying the experiences of assisted dying practitioners/providers (ADPs). The themes focused on three aspects of ADPs' experience: KNOWING: prior personal experience (personal beliefs, clinical background, and AD training) and reflective experiences of DOING assessments, service delivery, and patient/family experiences and BEING an ADP (personal, professional, emotional, and social impacts). Additionally, the themes highlighted the overarching influence of health system infrastructure, challenges, and resources that shaped ADPs' overall experience. CONCLUSION: These findings contribute to new knowledge by uncovering gaps in understanding, competency, service implementation, and the emotional impact on ADPs. The findings could inform the development of an educational, supportive, and culturally safe program, including resources for workforce development.
Addressing the gap in health data management skills: an online self-guided course for researchers and health professionals.
BACKGROUND: The healthcare sector is rapidly evolving with the rise of digital technology and data-driven decision-making. However, traditional medical education has yet to fully integrate training on managing health-related information, resulting in a significant skills gap among medical and research professionals. This gap is pronounced in low- and middle-income countries (LMICs), where data privacy concerns and inadequate infrastructure hinder efforts to utilise and share health data. AIMS: To address this gap, we developed an online, modular course aimed at providing foundational skills on capturing, storing and sharing health data. METHODS: The course was developed using the ADDIE(Analyze, Design, Develop, Implement, Evaluate) instructional design model. A needs assessment workshop involving 25 global health proffesionals identified key training gaps which informed the curriculum's development. A multidisciplinary team from six institutions developed the modules. The course was piloted in a face-to-face setting with 37 participants and later adapted for online delivery via the Global Health Network platform. We evaluated the course using Level 1 of Kirkpatrick's model for training evaluation. RESULTS: Six foundational modules were developed: Introduction to Data Management, Data Quality, Data Repositories, Ethics of Data Sharing, Data Governance, and Costing for Data Management. Between December 2020 and April 2024, 6,384 individuals from 90 countries completed the course. Of these, 32% were from Africa, 15% from Asia, 16% from South/Central America and the Caribbean, and 24% from Europe. Summative evaluations, based on voluntary post-module surveys, demonstrated high relevance to participants' learning needs (96.6%) and strong intentions to apply the skills gained (88.3%). Key motivators for enrollment included the course's free access, relevance to professional or academic needs, and trust in the organizations and authors behind the content. CONCLUSIONS: The high enrolment and broad geographical reach demonstrates the potential of online training as a cost-effective tool to equip health practitioners and researchers with data literacy skills. Future evaluations will assess its impact on participants' knowledge, behavior, and data-sharing and reuse practices.
Where There's Hope, There's Life 1 : On the Importance of Hope in Health Care.
It is widely supposed that it is important to ensure that patients undergoing medical procedures hope that their treatments will be successful. But why is hope so important, if indeed it is? After examining the answers currently on offer in the literature, we identify a hitherto unrecognized reason for supposing that it is important that patients possess hope for a successful treatment, which draws on prospect theory, Kahneman and Tversky's hugely influential descriptive theory about decision-making in situations of risk and uncertainty. We also consider some concerns about patient consent and the potential manipulation of patients that are raised by our account.
When conspiracy theorists win
‘Generalists’ hold that conspiracy theories, as a class, have epistemic defects. Well confirmed theories that invoke conspiracies, such as the theory that the Nixon administration conspired to orchestrate the break in at the Democratic National Committee offices in the Watergate complex, on 17 June 1972,–the ‘Watergate theory’–raise a problem for generalists as it’s hard to understand how such theories can have epistemic defects. The Watergate theory is often not considered a mere conspiracy theory, because it enjoys ‘official theory’ status and in folk usage that means it is not a conspiracy theory. However, most people concede that the Watergate theory was a conspiracy theory before obtaining official status. So, appealing to folk usage does not make the problem go away. Recently however, several generalist scholars including, Cassam, Mandik, Thalman and Butter, have argued that theories invoking conspiracies that enjoy official status were never conspiracy theories. I’ll consider their reasoning and show where they go wrong. I’ll work with the examples of the Watergate theory and the ‘false flag’ theory of the Mountain Meadows massacre of 1857, which has it that this massacre of over 100 people was led by white Utahn Mormons disguised as Native Americans.