This article contributes empirical findings and sociological theoretical perspectives to discussions of the role of community lay health workers, including in improving the health of individuals and communities. We focus on the role of the Health Trainer (HT), at its inception described as one of the most innovative developments in UK Public Health policy. As lay health workers, HTs are tasked with reducing health inequalities in disadvantaged communities by supporting clients to engage in healthier lifestyles. HTs are currently sociologically under-researched, (...) particularly in relation to occupational identity work, and the boundary work undertaken inter-occupationally with other health workers. To address this research lacuna, a qualitative study was undertaken with 25 HTs based in the Midlands region of the UK. In theorising our findings, we employ a novel combination of symbolic interactionist conceptualisation of 1) identity work, and of 2) boundary work. The article advances knowledge in the field of health and exercise by investigating and theorising how HTs construct, work at, manage, and communicate about professional/occupational boundaries, in order to provide personalised support to their clients in achieving and sustaining healthy behaviour change within the constraints of clients’ lifeworlds. (shrink)

Here in the Achilleid Statius catalogues the contributions of Greek towns to Agamemnon's expedition against Troy. Every item of equipment is appropriate to its origin. There is one puzzle, however: why is it that murorum tormenta are the peculiar contribution of Pylos and Messene? O. A. W. Dilke suggests that the proximity of classical Messene to Mt Ithome would have reminded Statius of the siege of that place by the Spartans in 464–59 b.c., when they were aided by the Athenians, (...) experts in siege warfare. This solution is undoubtedly ingenious but, based as it is upon association, it places this last entry in a quite different category from the previous entries: all the preceding items have been very definite products of their places of origin. K. von Barth , while noting the not unparalleled anachronism, attempts to account in another way for the siege-engines: ‘quia ibi silvae crassissimas arbores habent’. But there is no evidence to support this: Messenia features neither in the pages of Theophrastus or Pliny as a source of quality timber, nor in the poets as an area which is characterised by the stoutness of its trees. These theories pay insufficient attention to the verb tendunt, the vox propria for exerting a strain on rope, making it taut. (shrink)

Scholars have critiqued mainstream economic approaches to environmental valuation for decades. These critiques have intensified with the increased prominence of environmental valuation in decision-making. This paper has three goals. First, we summarise prominent critiques of monetary valuation, drawing mostly on the work of Clive Spash, who worked extensively on cost–benefit analysis early in his career and then became one of monetary valuation's most thorough and ardent critics. Second, we, as a group of scholars who study relational values, describe how relational (...) values research engages with and addresses many of the critiques of monetary valuation. Third, we offer suggestions for relational values research that continues and deepens its ability to respond to critiques of monetary valuation and contributes to transformative change towards sustainability. (shrink)

BackgroundPatients with COVID-19 may feel under pressure to participate in research during the pandemic. Safeguards to protect research participants include ethical guidelines [e.g. Declaration of Helsinki and good clinical practice (GCP)], legislation to protect participants’ privacy, research ethics committees (RECs) and informed consent. The International Committee of Medical Journal Editors (ICMJE) advises researchers to document compliance with these safeguards. Adherence to publication guidelines has been suboptimal in other specialty fields. The aim of this rapid review was to determine whether COVID-19 (...) human research publications report compliance with these ethical safeguards.MethodsA rapid systematic literature review was conducted in MEDLINE using the search term ‘COVID-19’. The search was performed in April 2020 with no start date and repeated to include articles published in November 2020. Filters were ‘Full free text available’ and ‘English Language’. Two reviewers assessed article title, abstracts and full texts. Non-COVID-19 articles and non-clinical studies were excluded. Independent reviewers conducted a second assessment of a random 20% of articles. The outcomes included reporting of compliance with the Declaration of Helsinki and GCP, REC approval, informed consent and participant privacy.ResultsThe searches yielded 1275 and 1942 articles of which 247 and 717 were deemed eligible, from the April search and November respectively. The majority of journals had editorial policies which purported to comply with ICMJE ethical standards. Reporting of compliance with ethical guidelines was low across all study types but was higher in the November search for case series and observational studies. Reporting of informed consent for case studies and observational studies was higher in the November search, but similar for case series. Overall, participant confidentiality was maintained but some case studies included a combination of details which would have enabled participant identification. Reporting of REC approval was higher in the November search for observational studies.ConclusionsWhile the majority of journal’s editorial policies purported to support the ethical safeguards, many COVID-19 clinical research publications identified in this rapid review lacked documentation of these important safeguards for research participants. In order to promote public trust, ethical declarations should be included consistently. (shrink)

This article introduces a novel theoretical framework for psychopathy that bridges dominant affective and cognitive models. According to the proposed impaired integration (II) framework of psychopathic dysfunction, topographical irregularities and abnormalities in neural connectivity in psychopathy hinder the complex process of information integration. Central to the II theory is the notion that psychopathic individuals are “‘wired up’ differently” (Hare, Williamson, & Harpur, 1988, p. 87). Specific theoretical assumptions include decreased functioning of the Salience and Default Mode Networks, normal functioning in (...) executive control networks, and less coordination and flexible switching between networks. Following a review of dominant models of psychopathy, we introduce our II theory as a parsimonious account of behavioral and brain irregularities in psychopathy. The II theory provides a unified theoretical framework for understanding psychopathic dysfunction and integrates principle tenets of affective and cognitive perspectives. Moreover, it accommodates evidence regarding connectivity abnormalities in psychopathy through its network theoretical perspective. (shrink)

Hedgehog (HH) signaling is a conserved pathway that drives developmental growth and is essential for the formation of most organs. The expression of HH target genes is regulated by a dual switch mechanism where GLI proteins function as bifunctional transcriptional activators (in the presence of HH signaling) and transcriptional repressors (in the absence of HH signaling). This results in a tight control of GLI target gene expression during rapidly changing levels of pathway activity. It has long been presumed that GLI (...) proteins also repress target genes prior to the initial expression of HH in a given tissue. This idea forms the basis for the limb bud pre‐patterning model for regulating digit number. Recent findings indicate that GLI repressor proteins are indeed present prior to HH signaling but contrary to this model, GLI proteins are inert as they do not regulate transcriptional responses or enhancer chromatin modifications at this time. These findings suggest that GLI transcriptional repressor activity is not a default state as assumed, but is itself regulated in an unknown fashion. We discuss these findings and their implications for understanding pre‐patterning, digit regulation, and HH‐driven disease. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Books ReceivedThe Ambitions of Curiosity: Understanding the World in Ancient Greece and China. By G.E.R. Lloyd. Cambridge: Cambridge University Press, 2002. Pp. xvi + 175. Price not given.The Art of the Han Essay: Wang Fu's Ch'ien-Fu Lun. By Anne Behnke Kinney. Tempe: Center for Asian Studies, Arizona State University, 1990. Pp. xi + 154. Paper $10.00.The Autobiography of Jamgön Kongtrul: A Gem of Many Colors. By Jamgön Kongtrul Lodrön (...) Thayé and translated by Richard Barron (Chökyi Nyima). Ithaca, New York: Snow Lion Publications, 2003. Pp. xxii + 549. Price not given.Awesome Nightfall: The Life, Times, and Poetry of Saigyō. By William R. LaFleur. Boston: Wisdom Publications, 2003. Pp. xiii + 173. Paper $14.95.Becoming the Compassion Buddha: Tantric Mahamudra for Everyday Life. By Lama Thubten Yeshe, edited by Robina Courtin, and foreword by Geshe Lhundub Sopa. Boston: Wisdom Publications, 2003. Pp. xi + 194. Paper $14.95.Between Two Worlds East and West: An Autobiography. By J. N. Mohanty. New Delhi: Oxford University Press, 2002. Pp. ix + 134. Hardcover RS 525.00.The Chinese Face of Jesus Christ. Edited by Roman Malek, S.V.D. Sankt Augustin, Germany: Institut Monumenta Serica and China-Zentrum; and Nettetal, Germany: Steyler Verlag, 2002. Pp. 391. EUR 40.00.Chinese Medicine in Contemporary China: Plurality and Synthesis. By Volker Scheid. Durham and London: Duke University Press, 2002. Pp. xiv + 407. Hardcover $69.95. Paper $23.95.Confucian Feminist: Memoirs of Zeng Baosun (1893-1978). Translated and adapted by Thomas L. Kennedy. Philadelphia: American Philosophical Society, 2002. Pp. xxi + 170. Price not given.Consciousness Studies: Cross-Cultural Perspectives. By K. Ramakrishna Rao. Jefferson (North Carolina) and London: McFarland and Company, 2002. Pp. 367. Hardcover $65.00.Constituting Communities: Theravāda Buddhism and the Religious Cultures of South and Southeast Asia. Edited by John Clifford Holt, Jacob N. Kinnard, and Jonathan S. Walters. Albany: State University of New York Press, 2003. Pp. viii + 224. Hardcover $65.50. Paper $21.95.Developments in Indian Philosophy from Eighteenth Century Onwards: Classical and Western. By Daya Krishna. Volume X Part 1 of History of Science, Philosophy and Culture in Indian Civilization, edited by D. P. Chattopadhyaya. New [End Page 110] Delhi: Centre for Studies in Civilizations, 2001. Pp. xxiii + 417. Hardcover RS 1200.East and West: Identità e dialogo interculturale. By Giangiorgio Pasqualotto. Venezia: Marsilo Editori, 2003. Pp. 210. EUR 16.00.Effortless Action: Wu-wei as Conceptual Metaphor and Spiritual Ideal in Early China. By Edward Slingerland. New York: Oxford University Press, 2003. Pp. xii + 352. Price not given.Encountering Kā lī: In the Margins, at the Center, in the West. Edited by Rachel Fell McDermott and Jeffrey J. Kripal. Berkeley and Los Angeles: University of California Press, 2003. Pp. xviii + 321. Hardcover $55.00, £37.95. Paper $21.95, £15.95.Encyclopedia of Chinese Philosophy. Edited by Antonio S. Cua. New York and London: Routledge, 2003. Pp. xx + 1020. Hardcover $150.00.Essays on Indian Philosophy. By J. N. Mohanty and edited by Purushottama Bilimoria. New Delhi: Oxford University Press, 2002. Pp. xxxvii + 347. Paper RS 525.00.Faith, Humor, and Paradox. By Ignacio L. Götz. Westport, Connecticut: Praeger Publishers, 2002. Pp. 136. Hardcover $61.95.Four Illusions: Candrakīrti's Advice for Travelers on the Bodhisattva Path. Translated by Karen C. Lang. New York: Oxford University Press, 2003. Pp. xv + 240. Price not given.The Great Awakening: A Buddhist Social Theory. By David R. Loy. Boston: Wisdom Publications, 2003. Pp. 223. Paper $16.95.The Hidden History of The Tibetan Book of the Dead. By Bryan J. Cuevas. New York: Oxford University Press, 2003. Pp. xi + 328. Price not given.Huang Di nei jing su wen: Nature, Knowledge, Imagery in an Ancient Chinese Medical Text. By Paul U. Unschuld. Berkeley and Los Angeles: University of California Press, 2003. Pp. xii + 520. Hardcover $75.00, £52.00.In Dewey's Wake: Unfinished Work of Pragmatic Reconstruction. Edited by William J. Gavin. Albany: State University of New York Press, 2003. Pp. vi + 249. Hardcover $71.50. Paper $23.95.Knowledge and Freedom in Indian Philosophy. By Tara Chatterjea. Lanham, Maryland: Lexington Books, 2002. Pp. xvi + 159. Hardcover... (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)

The links between Descartes logito and the schizophrenic symptom of "inserted thoughts" are used to illustrate the potential for two- way exchange between philosophy and psychiatry. Patients suffering thought insertion have thoughts in their heads, which "they" are thinking, but which they experience as the thoughts "of someone else": "I think therefore someone else is". Philosophical work on personal identity helps to clarify the remarkable phenomenological features of thought insertion: conversely, thought insertion challenges philosophical theories of personal identity. More generally, (...) future cross- disciplinary work will require a strong academic infrastructure, including training and research. (shrink)

Hedgehog (Hh) signaling is a widely studied signaling pathway because of its critical roles during development and in cell homeostasis. Vertebrate canonical and non‐canonical Hh signaling are typically assumed to be distinct and occur in different cellular compartments. While research has primarily focused on the canonical form of Hh signaling and its dependency on primary cilia – microtubule‐based signaling hubs – an extensive list of crucial functions mediated by non‐canonical Hh signaling has emerged. Moreover, amounting evidence indicates that canonical and (...) non‐canonical modes of Hh signaling are interlinked, and that they can overlap spatially, and in many cases interact functionally. Here, we discuss some of the many cellular effects of non‐canonical signaling and discuss new evidence indicating inter‐relationships with canonical signaling. We discuss how Smoothened (Smo), a key component of the Hh pathway, might coordinate such diverse downstream effects. Collectively, pursuit of questions such as those proposed here will aid in elucidating the full extent of Smo function in development and advance its use as a target for cancer therapeutics. (shrink)

In “Generalizing Generalizability in Information Systems Research,” Lee and Baskerville try to clarify generalization and classify it into four types. Unfortunately, their account is problematic. We propose repairs. Central among these is our balance-of-evidence argument that we should adopt the view that Hume’s problem of induction has a solution, even if we do not know what it is. We build upon this by proposing an alternative classification of induction. There are five types of generalization: theoretical, within-population, cross-population, contextual, and temporal, (...) with theoretical generalization being across the empirical and theoretical levels and the rest within the empirical level. Our classification also includes two kinds of inductive reasoning that do not belong to the domain of generalization. We then discuss the implications of our classification for information systems research. (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)

In Generalizing Generalizability in Information Systems Research Lee and Baskerville (2003) attempt to clarify generalization and distinguish four types of generalization. Although this is a useful objective, what they call generalization is often not generalization at all in the proper sense of the word. We elucidate generalization by locating their major errors. A main source of these is their failure to understand the depth of Hume’s problem of induction. We give a thorough explication of the problem and then give a (...) solution. Lastly, we propose an alternative taxonomy of generalization: theoretical, within-population, cross-population, contextual, and temporal. (shrink)

Discussions concerning whether there is a natural right to health care may occur in various forms, resulting in policy recommendations for how to implement any such right in a given society. But health care policies may be judged by international standards including the UN Universal Declaration of Human Rights. The rights enumerated in the UDHR are grounded in traditions of moral theory, a philosophical analysis of which is necessary in order to adjudicate the value of specific policies designed to enshrine (...) rights such as a right to health care. We begin with an overview of the drafting of the UDHR and highlight the primary influence of natural law theory in validating the rights contained therein. We then provide an explication of natural law theory by reference to the writings of Thomas Aquinas, as well as elucidate the complementary “capabilities approach” of Martha Nussbaum. We conclude that a right to health care ought to be guaranteed by the state. (shrink)

We discuss a case where clinical genomic investigation of muscle weakness unexpectedly found a genetic variant that might (or might not) predispose to kidney cancer. We argue that despite its off-target and uncertain nature, this variant should be discussed with the man who had the test, not because it is medical information, but because this discussion would allow the further clinical evaluation that might lead it to becoming so. We argue that while prominent ethical debates around genomics often take ‘results’ (...) as a starting point and ask questions as to whether to look for and how to react to them, the construction of genomic results is fraught with ethical complexity, although often couched as a primarily technical problem. We highlight the need for greater focus on, and appreciation of, the ethical work undertaken daily by scientists and clinicians working in genomic medicine and discuss how public conversations around genomics need to adapt to prepare future patients for potentially uncertain and unexpected outcomes from clinical genomic tests. (shrink)

Exploring what a scientific metaphysics grounded in biological practices could look like and how it might impact the way we investigate the world around us, the contributors to From Biological Practice to Scientific Metaphysics review and discuss long-held objections to metaphysics by natural scientists. They illuminate how, in order to learn about the world as it truly is, we must look not only at what scientists say but also what they do.

K Williams; The Labour We Delight In, Journal of Philosophy of Education, Volume 32, Issue 2, 28 June 2008, Pages 293–303, https://doi.org/10.1111/1467-9752.000.

Foundation models such as GPT-4 are fine-tuned to avoid unsafe or otherwise problematic behavior, such as helping to commit crimes or producing racist text. One approach to fine-tuning, called reinforcement learning from human feedback, learns from humans' expressed preferences over multiple outputs. Another approach is constitutional AI, in which the input from humans is a list of high-level principles. But how do we deal with potentially diverging input from humans? How can we aggregate the input into consistent data about "collective" (...) preferences or otherwise use it to make collective choices about model behavior? In this paper, we argue that the field of social choice is well positioned to address these questions, and we discuss ways forward for this agenda, drawing on discussions in a recent workshop on Social Choice for AI Ethics and Safety held in Berkeley, CA, USA in December 2023. (shrink)

I begin with a note about moral goodness as a quality, disposition, or trait of a person or human being. This has at least two different senses, one wider and one narrower. Aristotle remarked that the Greek term we translate as justice sometimes meant simply virtue or goodness as applied to a person and sometimes meant only a certain virtue or kind of goodness. The same thing is true of our word “goodness.” Sometimes being a good person means having all (...) the virtues, or at least all the moral ones; then goodness equals the whole of virtue. But sometimes, being a good person has a narrower meaning, namely, being kind, generous, and so forth. Thus, my OED sometimes equates goodness with moral excellence as a whole and sometimes with a particular moral excellence, viz., kindness, beneficence, or benevolence; and the Bible, when it speaks of God as being good sometimes means that God has all the virtues and sometimes only that he is kind, mereiful, or benevolent. When Jesus says, “Why callest thou me good: None is good, save one, that is God,” he seems to be speaking of goodness in the inclusive sense, but when the writer of Exodus has God himself say that he is “merciful and gracious, long-suffering, and abundant in goodness and truth,” God is using “goodness” in the narrower sense in which it means benevolence, for he goes on to make it clear that he is also just and severe. Similarly, “good will” may mean either “morally good will” in general, as it does in Kant, or it may mean only “benevolent will,” as it usually does; in “men of good will” it is perhaps ambiguous. (shrink)

Socrates' aim in the Republic is to show that being just is crucial for happiness. In Republic IV, Socrates argues that the just individual is one in whom each part of the soul or psyche performs its proper function, with the result that the individual attains psychic harmony. Commentators have worried, however, that this account of what it is to be just has little to do with being just in the ordinary sense of the term, which involves acting with regard (...) for the good of others. In this essay, I describe three attempts to show that there is a connection between Socrates' account of justice and justice in the ordinary sense of the term and I raise criticisms of each. I then outline my own approach, which emphasizes the importance of good relations with others for happiness. (shrink)

Background Researchers engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics are often publicly funded and intend their work to be in the public interest. These features of U.S. ELSI research create an imperative for these scholars to demonstrate the public utility of their work and the expectation that they engage in research that has potential to inform policy or practice outcomes. In support of the fulfillment of this “translational mandate,” the Center for (...) ELSI Resources and Analysis (CERA), funded by the National Human Genome Research Institute (NHGRI), aims to facilitate community-informed, ELSI research results synthesis and dissemination. However, little is known about how ELSI research scholars define the goals of translation and imagine the intended users of their research findings.Methodology We distributed a Qualtrics survey to ELSI scholars that aimed to determine: (1) researchers’ expectations for their research findings in relation to policy or practice outcomes, (2) the stakeholder groups researchers believe could benefit from their research findings, and (3) the methods researchers use to foster the uptake of their findings by those stakeholders.Results Most ELSI researchers surveyed thought there were stakeholders that could benefit from their research findings, including health care professionals, at-risk individuals, patients, and their family members, policy-makers, and researchers/scientists, and expected their research findings to inform the creation or revision of laws, policies, or practice guidelines. Most researchers planned to disseminate findings directly to relevant stakeholders, with fewer expecting dissemination support from research funders, universities, or other entities.Conclusion The broad range of research topics, disciplines, and set of potential end users represented in ELSI reseach complicate the work of a knowledge broker. Nonetheless, the CERA can play an important role in disseminating ELSI results to relevant stakeholders. Further research should explore outreach mechanisms. (shrink)

Normative theories of obligation, moral and nonmoral value, and meta-ethical issues and theories are considered.

A medical student's ability to present a case history is a critical skill that is difficult to teach. Case histories presented without theatrical engagement may fail to catch the attention of their intended recipients. More engaging presentations incorporate ‘stage presence’, eye contact, vocal inflection, interesting detail and succinct, well organised performances. They convey stories effectively without wasting time. To address the didactic challenge for instructing future doctors in how to ‘act’, the Mayo Medical School and The Mayo Clinic Center for (...) Humanities in Medicine partnered with the Guthrie Theater to pilot the programme ‘Telling the Patient's Story’. Guthrie teaching artists taught storytelling skills to medical students through improvisation, writing, movement and acting exercises. Mayo Clinic doctors participated and provided students with feedback on presentations and stories from their own experiences in patient care. The course's primary objective was to build students' confidence and expertise in storytelling. These skills were then applied to presenting cases and communicating with patients in a fresher, more engaging way. This paper outlines the instructional activities as aligned with course objectives. Progress was tracked by comparing pre-course and post-course surveys from the seven participating students. All agreed that the theatrical techniques were effective teaching methods. Moreover, this project can serve as an innovative model for how arts and humanities professionals can be incorporated for teaching and professional development initiatives at all levels of medical education. (shrink)

This essay, one of the last that Frankena wrote, provides a scrupulously detailed exploration of the various possible meanings of one of Sidgwick's most famous footnotes in the Methods Long intrigued by what Sidgwick had in mind when he said that he would explain how it came about that for moderns it is not tautologous to claim that one's own good is one's only reasonable ultimate end, Frankena uses this note as a point of departure for a penetrating review of (...) Sidgwick's insights and ambiguities on the differences between ancient and modern ethics. (shrink)

1 Evidence-based policy requires researchers to provide the answers to ecological questions that are of interest to policy makers. To find out what those questions are in the UK, representatives from 28 organizations involved in policy, together with scientists from 10 academic institutions, were asked to generate a list of questions from their organizations. 2 During a 2-day workshop the initial list of 1003 questions generated from consulting at least 654 policy makers and academics was used as a basis for (...) generating a short list of 100 questions of significant policy relevance. Short-listing was decided on the basis of the preferences of the representatives from the policy-led organizations. 3 The areas covered included most major issues of environmental concern in the UK, including agriculture, marine fisheries, climate change, ecosystem function and land management. 4 The most striking outcome was the preference for general questions rather than narrow ones. The reason is that policy is driven by broad issues rather than specific ones. In contrast, scientists are frequently best equipped to answer specific questions. This means that it may be necessary to extract the underpinning specific question before researchers can proceed. 5 Synthesis and applications. Greater communication between policy makers and scientists is required in order to ensure that applied ecologists are dealing with issues in a way that can feed into policy. It is particularly important that applied ecologists emphasize the generic value of their work wherever possible. (shrink)

This study identifies and explores evolving concepts of trust and privacy in the context of user-generated health data. We define “user-generated health data” as data captured through devices or software and used outside of traditional clinical settings for tracking personal health data. The investigators conducted qualitative research through semistructured interviews with researchers, health technology start-up companies, and members of the general public to inquire why and how they interact with and understand the value of user-generated health data. We found significant (...) results concerning new attitudes toward trust, privacy, and sharing of health data outside of clinical settings that conflict with regulations governing health data within clinical settings. Members of the general public expressed little concern about sharing health data with the companies that sold the devices or apps they used, and indicated that they rarely read the “terms and conditions” detailing how their data may be exploited by the company or third-party affiliates before consenting to them. In contrast, interviews with researchers revealed significant resistance among potential research participants to sharing their user-generated health data for purposes of scientific study. The widespread rhetoric of personalization and social sharing in “user-generated culture” appears to facilitate an understanding of user-generated health data that deemphasizes the risk of exploitation in favor of loosely defined benefits to individual and social well-being. We recommend clarification and greater transparency of regulations governing data sharing related to health. (shrink)