The speed and scale of the COVID‐19 pandemic has highlighted the limits of current health systems and the potential promise of non‐establishment research such as “DIY” research. We consider one example of how DIY research is responding to the pandemic, discuss the challenges faced by DIY research more generally, and suggest that a “trust architecture” should be developed now to contribute to successful future DIY efforts.

Rationale: Deep brain stimulation (DBS) of the hippocampus is proposed for enhancement of memory impaired by injury or disease. Many pre-clinical DBS paradigms can be addressed in epilepsy patients undergoing intracranial monitoring for seizure localization, since they already have electrodes implanted in brain areas of interest. Even though epilepsy is usually not a memory disorder targeted by DBS, the studies can nevertheless model other memory-impacting disorders, such as Traumatic Brain Injury (TBI). Methods: Human patients undergoing Phase II invasive monitoring for (...) intractable epilepsy were implanted with depth electrodes capable of recording neurophysiological signals. Subjects performed a delayed-match-to-sample (DMS) memory task while hippocampal ensembles from CA1 and CA3 cell layers were recorded to estimate a multi-input, multi-output (MIMO) model of CA3-to-CA1 neural encoding and a memory decoding model (MDM) to decode memory information from CA3 and CA1 neuronal signals. After model estimation, subjects again performed the DMS task while either MIMO-based or MDM-based patterned stimulation was delivered to CA1 electrode sites during the encoding phase of the DMS trials. Each subject was sorted (post hoc) by prior experience of repeated and/or mild-to-moderate brain injury (RMBI), TBI, or no history (control) and scored for percentage successful delayed recognition (DR) recall on stimulated vs. non-stimulated DMS trials. The subject’s medical history was unknown to the experimenters until after individual subject memory retention results were scored. Results: When examined compared to control subjects, both TBI and RMBI subjects showed increased memory retention in response to both MIMO and MDM-based hippocampal stimulation. Furthermore, effects of stimulation were also greater in subjects who were evaluated as having pre-existing mild-to-moderate memory impairment. Conclusion: These results show that hippocampal stimulation for memory facilitation was more beneficial for subjects who had previously suffered a brain injury (other than epilepsy), compared to control (epilepsy) subjects who had not suffered a brain injury. This study demonstrates that the epilepsy/intracranial recording model can be extended to test the ability of DBS to restore memory function in subjects who previously suffered a brain injury other than epilepsy, and support further investigation into the beneficial effect of DBS in TBI patients. (shrink)

The proliferation of personal data collection practices fundamentally reshapes how society is ordered and commercialized, and demands reconsideration of the possibilities for a just and equitable s...

Background Empirical studies of surrogate decision-making tend to assume that surrogates should make only a 'substituted judgement'—that is, judge what the patient would want if they were mentally competent. Objectives To explore what people want in a surrogate decision-maker whom they themselves select and to test the assumption that people want their chosen surrogate to make only a substituted judgement. Methods 30 undergraduate students were recruited. They were presented with a hypothetical scenario about their expected loss of mental capacity in (...) the future and asked to answer some questions about their choice of surrogate. These data were analysed qualitatively using thematic content analysis. Results Most respondents talked about choosing someone who was caring and competent in certain ways, giving interesting evidence for their judgements. Surprisingly few highlighted how well they thought their chosen surrogate knew their preferences and would be able to make a substituted judgement. Moreover, few specified that their chosen surrogate had similar attitudes and values to their own and so would make a similar decision to theirs in the circumstances presented. Some respondents also referred to the social role of their chosen surrogate or the social dynamics of their situation which influenced their choices, as well as to ideas of reciprocity and characteristics of honesty and loyalty. Conclusion In the event that they lose mental capacity, many people will not select a surrogate to decide about medical treatments on their behalf solely on the basis that they expect their surrogate to make a substituted judgement. (shrink)

This paper concludes a special feature of Sustainability Science that explores a broad range of social value theoretical traditions, such as religious studies, social psychology, indigenous knowledge, economics, sociology, and philosophy. We introduce a novel transdisciplinary conceptual framework that revolves around concepts of 'lenses' and 'tensions' to help navigate value diversity. First, we consider the notion of lenses: perspectives on value and valuation along diverse dimensions that describe what values focus on, how their sociality is envisioned, and what epistemic and (...) procedural assumptions are made. We characterise fourteen of such dimensions. This provides a foundation for exploration of seven areas of tension, between: (1) the values of individuals vs collectives; (2) values as discrete and held vs embedded and constructed; (3) value as static or changeable; (4) valuation as descriptive vs normative and transformative; (5) social vs relational values; (6) different rationalities and their relation to value integration; (7) degrees of acknowledgment of the role of power in navigating value conflicts. In doing so, we embrace the 'mess' of diversity, yet also provide a framework to organise this mess and support and encourage active transdisciplinary collaboration. We identify key research areas where such collaborations can be harnessed for sustainability transformation. Here it is crucial to understand how certain social value lenses are privileged over others and build capacity in decision-making for understanding and drawing on multiple value, epistemic and procedural lenses. (shrink)

This paper concludes a special feature of Sustainability Science that explores a broad range of social value theoretical traditions, such as religious studies, social psychology, indigenous knowledge, economics, sociology, and philosophy. We introduce a novel transdisciplinary conceptual framework that revolves around concepts of ‘lenses’ and ‘tensions’ to help navigate value diversity. First, we consider the notion of lenses: perspectives on value and valuation along diverse dimensions that describe what values focus on, how their sociality is envisioned, and what epistemic and (...) procedural assumptions are made. We characterise fourteen of such dimensions. This provides a foundation for exploration of seven areas of tension, between: (1) the values of individuals vs collectives; (2) values as discrete and held vs embedded and constructed; (3) value as static or changeable; (4) valuation as descriptive vs normative and transformative; (5) social vs relational values; (6) different rationalities and their relation to value integration; (7) degrees of acknowledgment of the role of power in navigating value conflicts. In doing so, we embrace the ‘mess’ of diversity, yet also provide a framework to organise this mess and support and encourage active transdisciplinary collaboration. We identify key research areas where such collaborations can be harnessed for sustainability transformation. Here it is crucial to understand how certain social value lenses are privileged over others and build capacity in decision-making for understanding and drawing on multiple value, epistemic and procedural lenses. (shrink)

This invaluable resource is the first one-volume, in-depth, comprehensive history of modern science ever published.

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

Background Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.Methods We conducted eight (...) focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, to explore general attitudes and perspectives regarding aspects of IGG practices, applications, and policies. Five major topics were explored in each focus group: when IGG should be used; who should perform IGG; how to approach consent for genetic database users; what systems of oversight should govern IGG practitioners; and whether to notify database users if their data are involved in law enforcement (LE) matching.Results Participants were supportive of IGG in most scenarios, especially for cold and violent cases. The favorable attitudes toward IGG were, however, tempered by distrust of law enforcement among some participants. All participants agreed that databases must inform users if IGG is allowed, but they did not agree on how individual database users should be allowed to opt out or whether to notify them if their data are involved in specific investigations. All participants agreed that IGG should be subject to some prescriptive guidelines, regulations, or accountability mechanisms.Conclusions These findings suggest broad public support for IGG, and interest in developing systems of accountability for its practice. Our study provides useful insight for policy makers, genomic database stewards, law enforcement, and other stakeholders in IGG’s practice, and suggests multiple directions for future research. (shrink)

Arguments in natural theology have recently increased in their number and level of sophistication. However, there has not been much analysis of the ways in which these arguments should be evaluated as good, taken collectively or individually. After providing an overview of some proposed goals and good-making criteria for arguments in natural theology, we provide an analysis that stands as a corrective to some of the ill-formed standards that are currently in circulation. Specifically, our analysis focuses on the relation between (...) the veracity of the premises and their relation to the conclusion of an argument. In addition to providing a clearer account of what makes an argument good, an upshot of our account is that there remain positive contributions for "weak" arguments, especially within cumulative case arguments in ramified natural theology. (shrink)

This case study details how and why integrating storytelling, empathy, and inclusive practice shifted QSuper, a large Australian finance organisation, from minimal awareness to moral awareness then moral capability in the delivery of services to Indigenous customers. During the Royal Commission into Misconduct in the Banking, Superannuation, and Financial Services Industry, QSuper were recognised for their exemplary service with Indigenous customers (Hayne, Interim report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth of Australia, (...) 2018; _Transcript of Proceedings, 13 August_, Commonwealth of Australia, 2018). This position was in stark contrast to the inaccessible service offerings of other financial organisations where some used predatory practices to sell unethical financial products to Indigenous Australians (Hayne, Interim report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth of Australia, 2018; Hayne, Final report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth of Australia, 2019a). Storytelling garned from visiting customers in remote communities and other meaningful activities involving inclusive practice to facilitate ethical decision-making in finance is different to standard functionalist finance approaches (Schinckus, Int Rev Financ Anal 40:103–106, 2015). Two empathetic questions asked within QSuper complementing the storytelling, were: “What is the right thing to do by the customer?” and “How would I feel if this were my mother?” Exploration into the lived reality of moral capacity is important based on the Commission finding many of the 490,000 finance staff do not know how to provide ethical services to vulnerable customers, in particular remote Indigenous customers (Australian Bureau of Statistics. Labour force, Australia, detailed. ABS. Retrieved from https://www.abs.gov.au/statistics/labour/employment-and-unemployment/labour-force-australia-detailed /latest-release, 2021; Hayne, Final report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth of Australia, 2019a). Furthermore, there is minimal literature on the role of Indigenous storytelling to heighten moral awareness in the finance industry which was found to lead to better ethical outcomes. (shrink)

In his concept of an anthropological physiology, F.J.J. Buytendijk has tried to lay down the theoretical and scientific foundations for an anthropologically-oriented medicine. The aim of anthropological physiology is to demonstrate, empirically, what being specifically human is in the most elementary physiological functions. This article contains a sketch of Buytendijk''s life and work, an overview of his philosophical-anthropological presuppositions, an outline of his idea of an anthropological physiology and medicine, and a discussion of some episternological and methodological problems. It is (...) demonstrated that Buytendijk''s design of an anthropological physiology is fragmentary and programmatic and that his methodology offers few points of contact for specific anthropological experimental research.Notwithstanding, it is argued that Buytendijk''s description of the subjective, animated body forms a pre-eminent point of reference for all research in physiology and psychology in which the specific human aspect is not ignored beforehand. (shrink)

At the start of the 21st century, Corporate Social Responsibility (CSR) seems to have great potential for innovating business practices with a positive impact on People, Planet and Profit. In this article the differences between the management systems approach of the nineties, and Corporate Social Responsibility are analysed.An analysis is structured around three business principles that are relevant for CSR and management systems: (1) doing things right the first time, (2) doing the right things, and (3) continuous improvement and innovation. (...) Basically CSR is focussing on the second principle, and management systems focus on the first. However, CSR is very likely to build on the management systems as well.From a CSR point of view, the existing generation of management systems with their focus on rational control (= doing things right) can only be of limited use in the development of CSR. However, the preventive rationalities of management systems are important. Values and the principle doing the right things is extremely relevant for CSR. This goes far beyond the present generation of ISO type management systems; opportunities stem from building on TQM approaches like the EFQM Business Excellence model. Continuous improvement and innovation is a permanent challenge underlying the two other business principles, and requires both individual and organisational learning processes. In the present generation of management systems, continuous improvement mainly addresses rational prevention, barely the value aspects of business.For the further development and implementation of CSR, each of the three business management principles are vital. There is a need for a new generation of management systems that addresses the values at stake in strategic decision-making, both at company level and in the behaviour of individuals, while the rationalities of prevention and anticipation are still relevant. In both directions more emphasis for continuous learning and innovation will be needed.CSR is likely to trigger the development of management systems in the directions mentioned. This will support companies to be credible and transparent in improving the performance with respect to people, planet and profit. (shrink)