Background: The Declaration of Helsinki, the World Medical Association’s statement of ethical guidelines regarding medical research, is published in the three official languages of the WMA: English, French and Spanish.Methods: A detailed comparison of the three official language versions was carried out to determine ways in which they differed and ways in which the wording of the three versions might illuminate the interpretation of the document.Results: There were many minor linguistic differences between the three versions. However, in paragraphs 1, 6, (...) 29, 30 and in the note of clarification to paragraph 29, there were differences that could be considered potentially significant in their ethical relevance.Interpretation: Given the global status of the Declaration of Helsinki and the fact that it is translated from its official versions into many other languages for application to the ethical conduct of research, the differences identified are of concern. It would be best if such differences could be eliminated but, at the very least, a commentary to explain any differences that are unavoidable on the basis of language or culture should accompany the Declaration of Helsinki. This evidence further strengthens the case for international surveillance of medical research ethics as has been proposed by the WMA. (shrink)

We propose a new approach for tracing value change. Value change may lead to a mismatch between current value priorities in society and the values for which technologies were designed in the past, such as energy technologies based on fossil fuels, which were developed when sustainability was not considered a very important value. Better anticipating value change is essential to avoid a lack of social acceptance and moral acceptability of technologies. While value change can be studied historically and qualitatively, we (...) propose a more quantitative approach that uses large text corpora. It uses probabilistic topic models, which allow us to trace values that are latent. We demonstrate the approach for five types of value change in technology. Our approach is useful for testing hypotheses about value change, such as verifying whether value change has occurred and identifying patterns of value change. The approach can be used to trace value change for various technologies and text corpora, including scientific articles, newspaper articles, and policy documents. (shrink)

Precision medicine research involving human biological material is becoming an increasingly central component of healthcare, and its potential is quickly growing due to rapid technological progress...

Background Clients are invited to play a role in decisions about their care. Collaborative deliberation comprises constructive engagement, recognition of alternative actions, comparative learning, construction and elicitation of preferences and preference integration. Collaborative deliberation between clients and professionals is a process that requires an interest in each other, sharing of views on alternatives and preferences and integrating into decisions. The aim is to gain insight into collaborative deliberation in consultations and the clients’ perception of arranging long-term care. Design A descriptive (...) qualitative study to explore collaborative deliberation in consultations between clients and professionals. Six organisations providing long-term care were included. Data collection of nine clients involved observations of consultation with field notes and audio-records, interviews with clients and professionals shortly and 3–6 months after the consultation and questionnaires to collect background information. The data were analysed by deductive content analysis. Findings Constructive engagement was visible in all consultations. Clients and professionals showed respect, empathy and curiosity towards each other. In most consultations, two or more alternative actions are recognised and discussed. Comparative learning appears to be two sided, the client and the professional learn from each other's knowledge and experiences. Construction and elicitation of preference, and preference integration, seems to be present, but difficult to recognise in all consultations. Discussion/conclusion Although all propositions could be identified, there seems room for improvement in preference elicitation and integration of these preferences in the discussions on courses of action. Assistance seems needed with preference elicitation, both for the clients and for the professional. (shrink)

This article provides ethical guidance on using race in health research as a variable or in defining the study population. To this end, a plain, non-exhaustive checklist is provided for researchers and research ethics committees, preceded by a brief introduction on the need for justification when using race as a variable or in defining a study population, the problem of exoticism, that distinctions pertain between race, ethnicity and ancestry, the problematic naming of races, and that race does not serve well (...) as a presumed biological construct in genetic research. (shrink)

The Safe-by-Design approach in synthetic biology holds the promise of designing the building blocks of life in an organism guided by the value of safety. This paves a new way for using biotechnologies safely. However, the Safe-by-Design approach moves the bulk of the responsibility for safety to the actors in the research and development phase. Also, it assumes that safety can be defined and understood by all stakeholders in the same way. These assumptions are problematic and might actually undermine safety. (...) This research explores these assumptions through the use of a Group Decision Room. In this set up, anonymous and non-anonymous deliberation methods are used for different stakeholders to exchange views. During the session, a potential synthetic biology application is used as a case for investigation: the Food Warden, a biosensor contained in meat packaging for indicating the freshness of meat. Participants discuss what potential issues might arise, how responsibilities should be distributed in a forward-looking way, who is to blame if something would go wrong. They are also asked what safety and responsibility mean at different phases, and for different stakeholders. The results of the session are not generalizable, but provide valuable insights. Issues of safety cannot all be taken care of in the R&D phase. Also, when things go wrong, there are proximal and distal causes to consider. In addition, capacities of actors play an important role in defining their responsibilities. Last but not least, this research provides a new perspective on the role of instruction manuals in achieving safety. (shrink)

Despite their status as high-income food producing nations, children and their caregivers, both in the United States (U.S.) and Australia can experience food insecurity. Nutrition researchers formed a joint U.S.-Australia collaboration to help advance food security for households with young children aged 0–5 years. This study investigated food insecurity from the perspective of caregivers, especially their perceptions of the impact of food insecurity on their own childhood, their current life, and for the children in their care. Semi-structured interviews were conducted (...) from July to September 2020 during the COVID-19 pandemic. Participants were recruited in Omaha, Nebraska, U.S. (_n_ = 19) and Melbourne, Victoria, Australia (_n_ = 22), during periods of stay-at-home public health orders. These two case study sites enabled an exploration of some universal, and some context-specific, social, economic, and health conditions that buffer, or exacerbate, food insecurity for families in these neo-liberal political settings. An inductive thematic analysis was conducted and established six themes:_growing up poor_, _lessons learned_,_ feeding a family amidst a pandemic_,_ caregiver coping strategies_, _food security in the early years_ and _protecting (young) children_. Perspectives on local anti-hunger strategies were organized to outline participant’s preferred solutions. Household food insecurity is conceptualized in public policy in the U.S. and Australia as a short-term crisis for people, justifying austere, time-limited and patchwork solutions. A narrative of caregivers’ lived experience of food insecurity suggests that it is inter-generational, and exacerbated by a food system shock (i.e., COVID-19). These findings from two varying cities and nations offer a different conceptualization of the timespan and nature of the phenomenon of food insecurity, challenging a dominant policy narrative and highlighting the inadequacy of current so-called solutions. (shrink)

Mutual perceptions of ethical behaviour among managers in nine EU-countries were quantatively measured and related to perceptions concerning "ease of cooperation". A strong positive correlation obtains: the more ethical a country is perceived to be, the higher it is valued as an international business partner. Germany, however, is a typical exception to this rule: German managers are perceived as the most ethical, but are considered relatively difficult to cooperate with.

Regenerative Medicine promises to develop treatments to regrow healthy tissues and cure the physical body. One of the emerging developments within this field is regenerative implants, such as jawbone or heart valve implants, that can be broken down by the body and are gradually replaced with living tissue. Yet challenges for embodiment are to be expected, given that the implants are designed to integrate deeply into the tissue of the living body, so that implant and body become one. In this (...) paper, we explore how regenerative implants may affect the embodied experience of implant recipients. To this end, we take a phenomenological approach. First, we explore what insights the existing phenomenological and empirical literature on embodiment offers regarding the experience of illness and of living with regular (non-regenerative) implants and organ transplants. Second, we apply these insights to better understand how future implant recipients might experience living with regenerative implants. Third, we conclude that concepts and considerations from the existing phenomenological literature do not sufficiently address what it might be like to live with an implantable technology that, over time, becomes one with the living body. We argue that the interwovenness and intimate relationship of people living with regenerative implants should be understood in terms of ‘entanglement’. Entanglement allows us to explore the complexities of human-technology relations, acknowledging the inseparability of humans and implantable technologies. Our theoretical foundations regarding the role of embodiment may be tested empirically once more people will be living with regenerative implants. (shrink)

We investigated whether regret predicted the motivation to act heroically. In a series of studies, we examined the relationship between regret, search for meaning in life, and heroism motivation. First, Study 1 (a and b) established the link between regret and search for meaning in life, considering regret as a whole, action regret, and inaction regret. Specifically, regret correlated positively with search for meaning in life. In additional two studies, we examined whether regret predicted the heroism motivation and whether this (...) effect would be mediated through search for meaning in life. Study 2 confirmed this hypothesis for individual differences in regret, using a correlational design. Study 3 confirmed the hypothesis for temporary experiences of regret, using an experimental design. In addition, in Study 3 we found that heroism motivation was more likely for people with high self-enhancement needs than for those with lower self-enhancement needs. We discuss the relationship between regret and heroism in light of these results and explore implications for everyday life. (shrink)

A hippocampal patient is described who shows preserved item recognition and simple recognition-based recollection but impaired recall and associative recognition. These data and other evidence suggest that contrary to Aggleton & Brown's target article, Papez circuit damage impairs only complex item-item-context recollection. A patient with perirhinal cortex damage and a delayed global memory deficit, apparently inconsistent with A&B's framework, is also described.

Sankary et al. (2022) report the results of an empirical study on research participant experiences of exiting research at the end of clinical trials of deep-brain-stimulation (DBS) and responsive n...