Pancreatitis is a complex, progressively destructive inflammatory disorder. Alcohol was long thought to be the primary causative agent, but genetic contributions have been of interest since the discovery that rare PRSS1, CFTR and SPINK1 variants were associated with pancreatitis risk. We now report two associations at genome-wide significance identified and replicated at PRSS1-PRSS2 and X-linked CLDN2 through a two-stage genome-wide study. The PRSS1 variant likely affects disease susceptibility by altering expression of the primary trypsinogen gene. The CLDN2 risk allele is (...) associated with atypical localization of claudin-2 in pancreatic acinar cells. The homozygous CLDN2 genotype confers the greatest risk, and its alleles interact with alcohol consumption to amplify risk. These results could partially explain the high frequency of alcohol-related pancreatitis in men. © 2012 Nature America, Inc. All rights reserved. (shrink)

Capturing the lively modernist milieu of Kenneth Burke's early career in Greenwich Village, where Burke arrived in 1915 fresh from high school in Pittsburgh, this book discovers him as an intellectual apprentice conversing with "the moderns." Burke found himself in the midst of an avant-garde peopled by Malcolm Cowley, Marianne Moore, Jean Toomer, Katherine Anne Porter, William Carlos Williams, Allen Tate, Hart Crane, Alfred Stieglitz, and a host of other fascinating figures. Burke himself, who died in 1993 at the (...) age of 96, has been hailed as America's most brilliant and suggestive critic and the most significant theorist of rhetoric since Cicero. Many schools of thought have claimed him as their own, but Burke has defied classification and indeed has often been considered a solitary, eccentric genius immune to intellectual fashions. But Burke's formative work of the 1920s, when he first defined himself and his work in the context of the modernist conversation, has gone relatively unexamined. Here we see Burke living and working with the crowd of poets, painters, and dramatists affiliated with Others magazine, Stieglitz's "291" gallery, and Eugene O'Neill's Provincetown Players; the leftists associated with the magazines The Masses and Seven Arts; the Dadaists; and the modernist writers working on literary journals like The Dial, where Burke in his capacity as an associate editor saw T. S. Eliot's "The Wasteland" into print for the first time and provided other editorial services for Thomas Mann, e.e. cummings, Ezra Pound, and many other writers of note. Burke also met the iconoclasts of the older generation represented by Theodore Dreiser and H. L. Mencken, the New Humanists, and the literary nationalists who founded Contact and The New Republic. Jack Selzer shows how Burke's own early poems, fiction, and essays emerged from and contributed to the modernist conversation in Greenwich Village. He draws on a wonderfully rich array of letters between Burke and his modernist friends and on the memoirs of his associates to create a vibrant portrait of the young Burke's transformation from aesthete to social critic. (shrink)

In Feminist Phenomenology and Medicine, the editors have assembled a collection of papers on important topics that should be addressed in the modern phenomenology of medicine - topics which do not exclusively focus on illness, disability, bodily deterioration or pathologies, as seen for instance in prior work of the philosophers S Kay Toombs, Frederik Svenaeus, and Havi Carel. The contributors met at a congress on feminist phenomenology and medicine in Sweden in 2011, and come from a variety of relevant disciplines (...) including bioethics, philosophy of medicine, feminism and gender studies. All contributors are well-known, major players within their particular fields.Although it seems obvious that new developments in medicine, such as organ transplantation and plastic surgery, will push the boundaries of normality within the medical discourse, this volume is the first of its kind to offer a collection of essays exploring a variety of medical conditions that are situated within the gray zo .. (shrink)

This paper explores food commoning through an ethnographic case study in Catalonia as our primary site while the Norwegian case is juxtaposed as a comparison, two agriculturally and economically different European countries. The ethnography analyses cooperation networks between organic food producers’ and consumers’ involving different nodes of community gardening initiatives, self-employed growers, local farmers and all of them under a unique cooperative integrating a community economy. The result it is a myriad of exchange practices ranging from reciprocity and barter to (...) market exchange without intermediaries through on-line platforms. Along these exchanges different options of currency intervene giving rise to novel social and cooperative relations. Similar initiatives in Norway show less variation and are less experimental regarding forms of payment but share similarities in relation to material articulations, concerns and forms of alternative practice. Although these novel forms do not represent a complete break from the more standardized supply chains, and hence from the oppositions/contradictions of production and consumption, the participants see themselves as contributing to a more general process of de-commodification of food. We explore the extent to which the meaning and moral values are mutually constituted in relation to socioeconomic exchanges and environmental caring that each person experiences based on different forms of cooperation and reciprocity. Food, we suggest, is more than a commodity on the market that we may influence through our role as consumers. It is a significant focal point connecting our lives to those of others that articulates one’s relations to society in a political manner. (shrink)

Resilience thinking challenges us to reconsider the meaning of sustainability in a world that must constantly adapt in the face of gradual and at times catastrophic change. This volume further asks environmental education and resource management scholars to consider the relationship of environmental learning and behaviours to attributes of resilient social-ecological systems - attributes such as ecosystem services, innovative governance structures, biological and cultural diversity, and social capital. Similar to current approaches to environmental education and education for sustainable development, resilience (...) scholarship integrates social and ecological perspectives. The authors of _Resilience in social-ecological systems: the role of learning and education_ present a wealth of perspectives, integrating theory with reviews of empirical studies in natural resource management, and in youth, adult, and higher education. The authors explore the role of education and learning in helping social-ecological systems as they respond to change, through adaptation and transformation. This book also serves to integrate a growing literature on resilience and social learning in natural resources management, with research in environmental education and education for sustainable development. This book was originally published as a special issue of _Environmental Education Research_. (shrink)

Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it comes to supporting (...) positive freedom, because it is usually framed in terms of risk and risk management. We show how this ‘risk discourse’ steers thinking on the good life in a particular way. We go on to argue that empirical research into the actual deliberation and decision making processes of individuals and families may be used to enrich the environment of personal deliberation in three ways: (1) it points at a richer set of values that deliberators can take into account, (2) it acknowledges the shared nature of genes, and (3) it shows how one might frame decisions in a non-binary way. We argue that the public sharing and discussing of stories about personal deliberations offers valuable input for others who face similar choices: it fosters their positive freedom to shape their view of the good life in relation to DNA-diagnostics. We conclude by offering some suggestions as to how to realize such public sharing of personal stories. (shrink)

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice (...) early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

The literatures on both authentic leadership and behavioral integrity have argued that leader integrity drives follower performance. Yet, despite overlap in conceptualization and mechanisms, no research has investigated how authentic leadership and behavioral integrity relate to one another in driving follower performance. In this study, we propose and test the notion that authentic leadership behavior is an antecedent to perceptions of leader behavioral integrity, which in turn affects follower affective organizational commitment and follower work role performance. Analysis of a survey (...) of 49 teams in the service industry supports the proposition that authentic leadership is related to follower affective organizational commitment, fully mediated through leader behavioral integrity. Next, we found that authentic leadership and leader behavioral integrity are related to follower work role performance, fully mediated through follower affective organizational commitment. These relationships hold when controlling for ethical organizational culture. (shrink)

Hindbrain development is orchestrated by a vertebrate gene regulatory network that generates segmental patterning along the anterior–posterior axis via Hox genes. Here, we review analyses of vertebrate and invertebrate chordate models that inform upon the evolutionary origin and diversification of this network. Evidence from the sea lamprey reveals that the hindbrain regulatory network generates rhombomeric compartments with segmental Hox expression and an underlying Hox code. We infer that this basal feature was present in ancestral vertebrates and, as an evolutionarily constrained (...) developmental state, is fundamentally important for patterning of the vertebrate hindbrain across diverse lineages. Despite the common ground plan, vertebrates exhibit neuroanatomical diversity in lineage‐specific patterns, with different vertebrates revealing variations of Hox expression in the hindbrain that could underlie this diversification. Invertebrate chordates lack hindbrain segmentation but exhibit some conserved aspects of this network, with retinoic acid signaling playing a role in establishing nested domains of Hox expression. (shrink)

The welfare of farmed fish is often regarded with less concern than the welfare of other husbandry animals, as fish are not universally classified as sentient beings. In Norway, farmed fish and other husbandry animals are legally protected under the same laws. Additionally, the legislature has defined a number of aquaculture-specific amendments, including mandatory welfare courses for fish farmers who have a key role in securing animal welfare, also with regards to noting welfare challenges in the production process. This article (...) uses fish welfare courses as a site from which to inquire about the common-sense understanding of fish welfare in Norwegian fish farming. The focus is specifically on fish farm employees, their experiences of welfare-related issues and contradictions in their daily work, and the struggle to act responsibly in aquaculture settings. Through participant observation at welfare courses, as well as interviews and conversations with fish farm workers, the article details how challenges are experienced ‘on the ground’, and suggests how fish farm workers’ own experiential knowledge might be mobilized to improve the general welfare of farmed fish. (shrink)

Research on young children in environmental education (EE) has focused on unstructured play in, or experiencing, nature. Little attention has been paid to young children’s stewardship efforts, or to the relation of such efforts to young children’s learning and capacity to contribute to their communities and local nature. This perspectives paper draws on the first author’s experience guiding pre-k and kindergarten children (4–6 years old) in outdoor educational projects in Santo Domingo (SD), Dominican Republic, in which the children produced a (...) park guide and a short film. In addition to becoming resources for the local community, these products are an example of children’s civic contributions. In “return on investment” language, guiding young children in outdoor experiences and reflecting on the experience represent the investment and the park guide and other products, and importantly, children’s recognition of their ability to make contributions to their community, represent the return on investment. Based on our observations that young children can make significant contributions to their communities when given the opportunity, this perspectives paper argues for a research agenda and investment in opportunities for young children to contribute to their socio-ecological communities. To support our perspective, we first review and critique the prevailing and emerging paradigms of early childhood EE, following which we briefly describe the Santo Domingo (SD) project, and close by integrating past work with the first author’s experience to argue for the importance of including young children in stewardship efforts. (shrink)

To determine the role Latino community gardens play in community development, open space, and civic agriculture, we conducted interviews with 32 community gardeners from 20 gardens, and with staff from 11 community gardening support non-profit organizations and government agencies. We also conducted observations in the gardens, and reviewed documents written by the gardeners and staff from 13 support organizations and agencies. In addition to being sites for production of conventional and ethnic vegetables and herbs, the gardens host numerous social, educational, (...) and cultural events, including neighborhood and church gatherings, holiday parties, children’s activities, school tours, concerts, health fairs, and voter registration drives. In some cases, the gardens also serve to promote community activism. The primary concern of gardeners is to secure land tenure in the face of pressures to develop the garden sites for housing. The support organizations and agencies provide help with land tenure, as well as with advocacy, organization, and horticultural practices. Although the role of the Latino gardens in community development appears to be more important than their role in open space or agricultural production, the gardens can also be viewed as unique “participatory landscapes” that combine aspects of all three movements, as well as provide a connection between immigrants and their cultural heritage. (shrink)

The Individual and the Political Order examines major theoretical perspectives, both historical and contemporary, in major issues in social and political philosophy. It combines accessibility with appreciation of philosophical complexity and discusses applied issues, such as morality and war, as well as theoretical approaches to justice, rights, and democratic liberal thought.

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving (...) patients in biomedical research aiming to address its main challenges. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving (...) patients in biomedical research aiming to address its main challenges.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in biomedical research. It should enable patients to put forward their experiential knowledge, to develop a rich view of what an envisioned innovation might look like and do, and to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation. (shrink)

Multinational corporations (MNCs) have brought attention to the challenges of business ethics in intercultural settings. A lack of understanding regarding cultural pluralism in business ethics education has motivated some scholars to consider a broader lens, one that recognizes the influence of religion (Spalding and Franks 2012). Management awareness of the similarities and differences that stem from deeply held beliefs is essential, as unstated thoughts and feelings caninfluence starting assumptions, even before ethical decision-making processes begin. If deeply entrenched cultural traditions and (...) religious values remain implicit and/or misunderstood, collaborative efforts may be derailed due to an inadvertent lack of respect and understanding. Because many Westerners remain unfamiliar with Muslim-based beliefs, the authors advance business ethics education by offering an overview of business practices in the Middle East. A modeland exercise are presented as tools to promote awareness of cultural perspectives. This platform for understanding will help adult learners see how their personal origins can shape and influence management thought. (shrink)

Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it comes to supporting (...) positive freedom, because it is usually framed in terms of risk and risk management. We show how this ‘risk discourse’ steers thinking on the good life in a particular way. We go on to argue that empirical research into the actual deliberation and decision making processes of individuals and families may be used to enrich the environment of personal deliberation in three ways: (1) it points at a richer set of values that deliberators can take into account, (2) it acknowledges the shared nature of genes, and (3) it shows how one might frame decisions in a non-binary way. We argue that the public sharing and discussing of stories about personal deliberations offers valuable input for others who face similar choices: it fosters their positive freedom to shape their view of the good life in relation to DNA-diagnostics. We conclude by offering some suggestions as to how to realize such public sharing of personal stories. (shrink)

In this volume, Simona Goi and Frederick M. Dolan gather stimulating arguments for the indispensability of fiction_including poetry, drama, and film_as irreplaceable sites for wrestling with nature, meaning, shortcomings, and the future of modern politics.

Cancer is a singular cellular state, the emergence of which destabilises the homeostasis reached through the evolution to multicellularity. We present the idea that the onset of the cellular disobedience to the metazoan functional and structural architecture, known as the cancer phenotype, is triggered by changes in the cell's external environment that occur with ageing: what ensues is a breach of the social contract of multicellular life characteristic of metazoans. By integrating old ideas with new evidence, we propose that with (...) ageing the environmental information that maintains a multicellular organisation is eroded, rewiring internal processes of the cell, and resulting in an internal shift towards an ancestral condition resulting in the pseudo‐multicellular cancer phenotype. Once that phenotype emerges, a new local social contract is built, different from the homeostatic one, leading to tumour formation and the foundation of a novel local ecosystem. (shrink)

Language’s intentional nature has been highlighted as a crucial feature distinguishing it from other communication systems. Specifically, language is often thought to depend on highly structured intentional action and mutual mindreading by a communicator and recipient. Whilst similar abilities in animals can shed light on the evolution of intentionality, they remain challenging to detect unambiguously. We revisit animal intentional communication and suggest that progress in identifying analogous capacities has been complicated by (i) the assumption that intentional (that is, voluntary) production (...) of communicative acts requires mental-state attribution, and (ii) variation in approaches investigating communication across sensory modalities. To move forward, we argue that a framework fusing research across modalities and species is required. We structure intentional communication into a series of requirements, each of which can be operationalised, investigated empirically, and must be met for purposive, intentionally communicative acts to be demonstrated. Our unified approach helps elucidate the distribution of animal intentional communication and subsequently serves to clarify what is meant by attributions of intentional communication in animals and humans. (shrink)

This study examines the similarities and differences in pre- and post-Sarbanes-Oxley corporate ethics codes and codes of conduct using the framework of structuration theory. Following the passage of the Sarbanes-Oxley (SOX) legislation in 2002 in the United States, publicly traded companies there undertook development and revision of their codes of ethics in response to new regulatory requirements as well as incentives under the U.S. Corporate Sentencing Guidelines, which were also revised as part of the SOX mandates. Questions that remain are (...) whether these new or revised codes are effective means of communicating changed ethical foci and attitudes in organizations. Centering resonance analysis (CRA) is used to identify differences and similarities across time and industries by analyzing word networks of 46 pre- and post-SOX corporate codes of ethics. Analyses focus on content and structure of generated word networks as well as resulting factors that emerged from the texts. Results are interpreted from the structuration perspective that content and structure of codes are constrained and enabled by system structures while they function to produce and reproduce those structures. Results indicate that corporate codes of ethics are formal discourses of ethics, laws, and control. Code structure has changed across time, with an increased emphasis on compliance in post-SOX codes. Implications for research and practice are discussed in light of findings. (shrink)

Although the therapeutic misconception (TM) has been well described over a period of approximately 20 years, there has been disagreement about its implications for informed consent to research. In this paper we review some of the history and debate over the ethical implications of TM but also bring a new perspective to those debates. Drawing upon our experience of working in the context of translational research for rare childhood diseases such as Duchenne muscular dystrophy, we consider the ethical and legal (...) implications of the TM for parental consent to research. In this situation, it is potentially the parent who is vulnerable to TM. In our analysis we not only consider the context of informed consent for research but also the wider environment in which the value of research is promoted, more broadly through the media but also more specifically through the communication strategies of patient organizations. All dissemination about developments in research for health runs the risk of portraying an overly optimistic view of the promise of biotechnological solutions and has the potential to encourage a ‘collective’ TM. In this paper we consider the challenge that TM presents to parents as well as explore the ethical and legal responsibilities of researchers to ensure an appropriately informed consent: compatible with a hopeful disposition of parents who consent for the their children whilst avoiding a blind and misleading optimism. (shrink)

The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

Background In their paper “Research approvals iceberg: how a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better” Petrova and Barclay highlight concerns with the health research regulatory environment in the UK. Discussion As long-standing chairs of NHS research ethics committees, researchers, and also academics in research ethics, we are also often frustrated with the regulatory process in the UK. However, we think that Petrova and Barclay’s analysis is misleading because it conflates research (...) ethics with governance and funding processes, thus failing to adequately distinguish between the national coordinating function of the Health Research Authority, local research governance processes, and interactions with research sponsors and/or the Clinical Research Network. (shrink)

Guilt and shame are self-conscious emotions with implications for mental health, social and occupational functioning, and the effectiveness of sports practice. To date, the assessment and role of athlete-specific guilt and shame has been under-researched. Reporting data from 174 junior elite cricketers, the present study utilized exploratory factor analysis in validating the Athletic Perceptions of Performance Scale, assessing three distinct and statistically reliable factors: athletic shame-proneness, guilt-proneness, and no-concern. Conditional process analysis indicated that APPS shame-proneness mediated the relationship between general (...) and athlete-specific distress. While APPS domains of guilt-proneness and no-concern were not significant mediators, they exhibited correlations in the expected direction with indices of psychological distress and well-being. The APPS may assist coaches and support staff identify players who may benefit from targeted interventions to reduce the likelihood of experiencing shame-prone states. (shrink)

De Marco and colleagues claim that the standard account of invasiveness as commonly encountered ‘…does not capture all uses of the term in relation to medical interventions1 ’. This is open to challenge. Their first example is ‘non-invasive prenatal testing’. Because it involves puncturing the skin to obtain blood, De Marco et al take this as an example of how an incision or insertion is not sufficient to make an intervention invasive; here is a procedure that involves an incision, but (...) it is regarded as non-invasive. However, this ignores the context, and the term should really be understood in reference to the fetus. It is hard to believe healthcare professionals regard taking blood to measure, for example, ferritin levels as invasive but taking blood to look for fragments of fetal DNA as not. If anyone uses the term thinking it is not invasive to the mother, the solution would be to call it invasive, not redefine what is invasive. De Marco and colleagues’ second example is describing electroconvulsive therapy (ECT) as invasive. However, this is not borne out by their referenced papers. The first cited source is about non-invasive brain stimulation2 and only contains a single sentence about ECT. This sentence may suggest that their view is that ECT …. (shrink)

Background: Mental healthcare needs person-tailored interventions. Experience Sampling Method (ESM) can provide daily life monitoring of personal experiences. This study aims to operationalize and test a measure of momentary reward-related Quality of Life (rQoL). Intuitively, quality of life improves by spending more time on rewarding experiences. ESM clinical interventions can use this information to coach patients to find a realistic, optimal balance of positive experiences (maximize reward) in daily life. rQoL combines the frequency of engaging in a relevant context (a (...) ‘behavior setting’) with concurrent (positive) affect. High rQoL occurs when the most frequent behavior settings are combined with positive affect or infrequent behavior settings co-occur with low positive affect. Methods: Resampling procedures (Monte Carlo experiments) were applied to assess the reliability of rQoL using various behavior setting definitions under different sampling circumstances, for real or virtual subjects with low-, average- and high contextual variability. Furthermore, resampling was used to assess whether rQoL is a distinct concept from positive affect. Virtual ESM beep datasets were extracted from 1058 valid ESM observations for virtual and real subjects. Results: Behavior settings defined by Who-What contextual information were most informative. Simulations of at least 100 ESM observations are needed for reliable assessment. Virtual ESM beep datasets of a real subject can be defined by Who-What-Where behavior setting combinations. Large sample sizes are necessary for reliable rQoL assessments, except for subjects with low contextual variability. rQoL is distinct from positive affect. Conclusion: rQoL is a feasible concept. Monte Carlo experiments should be used to assess the reliable implementation of an ESM statistic. Future research in ESM should asses the behavior of summary statistics under different sampling situations. This exploration is especially relevant in clinical implementation, where often only small datasets are available. (shrink)

The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data (...) or would share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data (including potential commercialization), and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data (NAD) and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)