The aim of this study was to test red - green dichromats' ability to discriminate between illuminant and surface-reflectance changes in natural scenes. Stimuli were simulations of natural scenes presented on a colour monitor with 10-bit resolution per gun. The natural scenes were obtained with a fast hyperspectral imaging system. Six different scenes (including rocks, foliage, and buildings) were tested. In each trial, two images were presented in sequence, each for 1 s, with no interval. The images differed in the (...) phase of daylight on the scene: first with correlated colour temperature 25 000 K, then 6 700 K. The spectral reflectance of a region in the second image was changed randomly, consistent with a local change in daylight. The observer's task was to decide whether a particular surface in the successive images was the same (pure illuminant change) or different (illuminant change with a surface-reflectance change). The performance of four deuteranopes and five protanopes varied considerably across the scenes tested, with mean colour constancy indices (± 1 SEM) of 0.48 (± 0.13) and 0.19 (± 0.10), respectively (1.0 representing ideal performance). Deuteranopes seemed less disadvantaged than protanopes, performing close to normal with some scenes. (shrink)

This article examines how ‘trauma’ has been conceptualised in the unresolved state of mind classification in the Adult Attachment Interview, introduced by Main and Hesse in 1990. The unresolved state of mind construct has been influential for three decades of research in developmental psychology. However, not much is known about how this measure of unresolved trauma was developed, and how it relates to other conceptualisations of trauma. We draw on previously unavailable manuscripts from Main and Hesse's personal archive, including various (...) editions of unpublished coding manuals, and on Main–Bowlby correspondence from the John Bowlby Archive at the Wellcome Trust in London. This article traces the emergence of the unresolved state of mind classification, and examines the assumptions about trauma embedded in the construct. These assumptions are situated both in the immediate context of the work of Main and Hesse and in terms of wider discourses about trauma in the period. Our analysis considers how a particular form of trauma discourse entered into attachment research, and in doing so partly lost contact with wider disciplinary study of trauma. (shrink)

Background: Moral case deliberation is increasingly becoming part of various Dutch healthcare organizations. Although some evaluation studies of moral case deliberation have been carried out, research into the results of moral case deliberation within aged care is scarce. Research questions: How did participants evaluate moral case deliberation? What has moral case deliberation brought to them? What has moral case deliberation contributed to care practice? Should moral case deliberation be further implemented and, if so, how? Research design: Quantitative analysis of a (...) questionnaire study among participants of moral case deliberation, both caregivers and team leaders. Qualitative analysis of written answers to open questions, interview study and focus group meetings among caregivers and team leaders. Participants and research context: Caregivers and team leaders in a large organization for aged care in the Netherlands. A total of 61 moral case deliberation sessions, carried out on 16 care locations belonging to the organization, were evaluated and perceived results were assessed. Ethical considerations: Participants gave informed consent and anonymity was guaranteed. In the Netherlands, the law does not prescribe independent ethical review by an Institutional Review Board for this kind of research among healthcare professionals. Findings: Moral case deliberation was evaluated positively by the participants. Content and atmosphere of moral case deliberation received high scores, while organizational issues regarding the moral case deliberation sessions scored lower and merit further attention. Respondents indicated that moral case deliberation has the potential to contribute to care practice as relationships among team members improve, more openness is experienced and more understanding for different perspectives is fostered. If moral case deliberation is to be successfully implemented, top-down approaches should go hand in hand with bottom-up approaches. Conclusion: The relevance of moral case deliberation for care practice received wide acknowledgement from the respondents. It can contribute to the team’s cohesion as mutual understanding for one another’s views is fostered. If implemented well, moral case deliberation has the potential to improve care, according to the respondents. (shrink)

_Human behaviour plays a significant role in most of the leading causes of death. Psychological science has the potential to enhance health outcomes through a better understanding of health promoting and health damaging behaviours. Health psychology and the related field of behavioural medicine focus on the interplay among biological dispositions, behaviour, and social context. The field might advance by building better collaboration with other fields of medicine, sharing expertise on technical aspects of psychometric outcomes assessment, identifying behavioural interventions to reduce (...) health disparities, and creating an infrastructure that fosters multidisciplinary research._. (shrink)

© 2016 Regents of the University of California.The Review summarizes much of particle physics and cosmology. Using data from previous editions, plus 3,062 new measurements from 721 papers, we list, evaluate, and average measured properties of gauge bosons and the recently discovered Higgs boson, leptons, quarks, mesons, and baryons. We summarize searches for hypothetical particles such as supersymmetric particles, heavy bosons, axions, dark photons, etc. All the particle properties and search limits are listed in Summary Tables. We also give numerous (...) tables, figures, formulae, and reviews of topics such as Higgs Boson Physics, Supersymmetry, Grand Unified Theories, Neutrino Mixing, Dark Energy, Dark Matter, Cosmology, Particle Detectors, Colliders, Probability and Statistics. Among the 117 reviews are many that are new or heavily revised, including those on Pentaquarks and Inflation. The complete Review is published online in a journal and on the website of the Particle Data Group. The printed PDG Book contains the Summary Tables and all review articles but no longer includes the detailed tables from the Particle Listings. A Booklet with the Summary Tables and abbreviated versions of some of the review articles is also available. (shrink)

Among bioethicists and members of the public, genetics is often regarded as unique in its ethical challenges. As medical researchers and clinicians increasingly combine genetic information with a range of non-genetic information in the study and clinical management of patients with common diseases, the unique ethical challenges attributed to genetics must be re-examined. A process of genetic routinisation that will have implications for research and clinical ethics, as well as for public conceptions of genetic information, is constituted by the emergence (...) of new forms of genetic medicine, in which genetic information is interpreted in a multifactorial frame of reference. Although the integration of genetics in medical research and treatment may be a helpful corrective to the mistaken assumptions of genetic essentialism or determinism, the routinisation of genetics may have unintended consequences for the protection of genetic information, perceptions of non-genetic information and the loss of genetic research as a laboratory for exploring issues in research and clinical ethics. Consequently, new ethical challenges are presented by the increasing routinisation of genetic information in both biomedical and public spheres. (shrink)

Publicity for (and laterly increased economic stringency which makes more likely), failures of care in the NHS engender concern for care quality while its assurance remains the subject of a fragmented and unhelpful literature. A selective attempt is made to examine some underlying principles by posing and answering three questions. What is the quality of care? What basic principles must be followed in defining `standards'? How then may quality be assured? Any definition of care must be multi-faceted and in common (...) use pervaded with the patients' pre-occupation with a search for cures. Nevertheless, it is argued that there are gains in restricting the technical use of the term `care' to those systematic processes of health services and their culture which impinge on the personal experience of patients and which fashion their response. In contemporary society care ought to be designed to restore and enhance the independence, dignity and choice of the patient. Although there is a contrary tendency to abandon problems of care to the professionals, standards for care should be judged ultimately not from the specialised professional but from the viewpoint of lay people whose behaviour in the outside world fashions those norms by which independence, dignity and choice are judged. A number of difficulties in identifying and securing improvements in care are discussed. In particular, it is argued that such is the interdependence of the style of management of an institution and the style of care it provides that enforcement of high quality care is likley to be a contradiction in terms. Only trained and sensitive staff can act intuitively and pre-emptively to prevent even incipient deterioration in care. They cannot carefully foster at all times the independence and dignity of their patients unless they are treated in a similar way as professional employees. As an initial step in improving the quality of care a simple start is urged upon implementing an inventory of checks. These are designed to establish the identification and operation of health care policies and practices which give appropriate recognition to the characteristics of care that patients and public expect, coming as they do from a lay rather than professional world. The article concludes with an appropriate inventory of questions to be put to professionals by those laymen who are increasingly imported into health care management through community representation (in CHCs) and staff participation (in joint consultation) and whose interest and concern should be harnessed appropriately. (shrink)

We examine metonymy at psycho- and neurolinguistic levels, seeking to adjudicate between two possible processing implementations. We compare highly conventionalized systematic metonymy to lesser-conventionalized circumstantial metonymy. Whereas these two metonymy types differ in terms of contextual demands, they each reveal a similar dependency between the named and intended conceptual entities. We reason that if each metonymy yields a distinct processing time course and substantially non-overlapping preferential localization pattern, it would not only support a two-mechanism view but would suggest that conventionalization (...) acts as a linguistic categorizer. By contrast, a similar behavior in time course and localization would support a one-mechanism view and the inference that conventionalization acts instead as a modulator of contextual felicitousness, and that differences in interpretation introduced by conventionalization are of degree, not of kind. Results from three paradigms: self-paced reading, event-related potentials, and functional magnetic resonance imaging, reveal the following: no main effect by condition for either metonymy type immediately after the metonymy trigger, and a main effect for only the Circumstantial metonymy one word post-trigger ; a N400 effect across metonymy types and a late positivity for Circumstantial metonymy ; and a highly overlapping activation connecting the left ventrolateral prefrontal cortex and the left dorsolateral prefrontal cortex. Altogether, the pattern observed does not reach the threshold required to justify a two-mechanism system. Instead, the pattern is more naturally understood as resulting from the implementation of a generalized referential dependency mechanism, modulated by degree of context dependence/conventionalization, thus supporting architectures of language whereby “lexical” and “pragmatic” meaning relations are encoded along a cline of contextual underspecification. (shrink)

The diffusion of technology in the US has taken place in an environment of both regulation and free enterprise. Each has been subject to manipulation by doctors and medical administrators that has fostered unprecedented ethical dilemmas and legal challenges. Understanding these developments and historical precedents may allow a more rational diffusion policy for medical technology in the future.

BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their (...) participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal.MethodsWe conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents’ decision-making processes relating to their participation in a large-scale, centralized repository for health research data.ResultsThe decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants’ perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants.ConclusionsOur findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures. (shrink)

This book is a collection of secondary essays on America's most important philosophic thinkers—statesmen, judges, writers, educators, and activists—from the colonial period to the present. Each essay is a comprehensive introduction to the thought of a noted American on the fundamental meaning of the American regime.

Background There is a need for interdisciplinary research to better understand how pedagogical approaches in primary physical education (PE) can support the linked development of physical, cognitive and affective aspects of physical literacy and physical activity behaviors in young children living in deprived areas. The Skill Acquisition Methods fostering Physical Literacy in Early-Physical Education (SAMPLE-PE) study aims to examine the efficacy of two different pedagogies for PE, underpinned by theories of motor learning, to foster physical literacy. Methods SAMPLE-PE will (...) be evaluated through a cluster-randomized controlled trial targeting 5–6 year old children from schools located in areas of high deprivation in Merseyside, North-West England. Schools will be randomly allocated to one of three conditions: Linear Pedagogy, Non-linear Pedagogy, or Control. Non-linear and Linear Pedagogy intervention primary schools will receive a PE curriculum delivered by trained coaches over 15 weeks, while control schools will follow their usual practice. Data will be collected at baseline (T0), immediately post-intervention (T1), and 6 months after the intervention has finished (T2). Children’s movement competence is the primary outcome in this trial. Secondary outcomes include physical activity, perceived competence, motivation, executive functions, and self-regulation. An extensive process evaluation will also examine implementation factors such as intervention context, reach, dose, fidelity and acceptability. Discussion The SAMPLE-PE project will enable better understanding surrounding how to operationalise physical literacy through enrichment of PE practices in early PE. The study will provide robust scientific evidence regarding the efficacy of underpinning PE pedagogy with theories of motor learning to promote the development of physical literacy. Trial Registration Retrospectively registered on 5th September 2018 at ClinicalTrials.gov, a resource provided by the U.S. National Library of Medicine (Identifier: NCT03551366). (shrink)

Reconstructive allografts using Vascularized Composite Allotransplantation are providing individuals living with upper limb loss and facial disfigurement with new opportunities for a sensate, esthetically acceptable, and functional alternative to current treatment strategies. Important research attention is being paid to how best to assess and screen candidates for VCA, measure optimal patient outcomes, and support patient adherence to lifelong behaviors and medical regimens. Far less attention, however, has been dedicated to the team science required for these complex VCA teams to form, (...) prepare, and provide the highest quality clinical and psychosocial care to those receiving VCA. VCA teams are unique in that they require specialized team members whose scope of practice may not otherwise overlap. The team also needs to constantly negotiate balancing patient safety with multiple risks throughout the transplant process. This study aimed to elucidate the team science needed for this highly innovative and complex area of medicine. Using in-depth qualitative interviews with 14 VCA team members and observations at team meetings, we found that careful consideration of team composition, team structure, and organizational commitment influences team performance and patient outcomes, but that to be efficient and truly effective, teams need to commit to developing processes that foster collaboration. These processes are action-oriented, strategic and interpersonal. Dedication and commitment to team science allows teams to manage conflict under stress and exercise ways to leverage strengths to provide optimal performance or patient psychosocial and clinical outcomes. This study can provide insight into quality improvement efforts for VCA teams and guidance for other transplant programs that wish to consider expansion into VCA. (shrink)

Valuing Peak Experience in Everyday Lives takes Abraham Maslow's concept of peak experience and compares how people have encountered transcendent peak experiences, and related phenomena such as flow and peak performance in their everyday lives. By examining existing research and sharing people's actual encounters in different contexts such as music, education, sport, creative arts and nature, the importance and value of peak experiences and self-transcendence in our lives can be better understood and fostered. The book explores the challenges, benefits and (...) opportunities presented by understanding peak experience in contemporary contexts. Drawing on research from positive psychology and transpersonal psychology, each of the twelve chapters, reports on a work or leisure context where peak experiences have been generated and studied. The chapters are introduced by drawing on relevant theory and research and then expanded via accounts, vignettes and examples from people immersed in those activities or contexts to provide a blend of case stories and theoretical foundations. The book is valuable reading for professional practitioners such as psychologists, educators, coaches, psychotherapists and those interested in personal development. It will also be relevant for students of transpersonal and positive psychology, humanism and human development, interested in understanding transcendent peak experiences and related concepts, such as flow. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Editorial Reflections on Philosophizing in Music EducationEstelle R. Jorgensen and Iris M. YobIn this article, we reflect on issues that go to the heart of teaching and scholarship in the philosophy of music education. After thirty years of editing Philosophy of Music Education Review, it is a good time to take stock of the philosophical work that has been and is being published and of challenges that remain.Over the (...) years, there has been a growing quality of philosophical articles published in the journal, due in significant part to the efforts of reviewers and the willingness of writers to work with their suggestions. Authors regularly express appreciation for the informed, critical, and constructive reviews their work receives. An exemplary body of philosophical scholarship in music education has been published over this time and PMER is regarded as a premier journal internationally devoted exclusively to the philosophy of music education. In thirty volumes of uninterrupted publication, we have sought to be responsive to important issues in music education. Our writers have engaged relevant subjects of interest to our readers, citations of articles remain strong, and articles are included in [End Page 109] university and college course reading lists. PMER is available in print and online via subscription; it has a wide digital exposure in search engines and leading indexes, and our readership continues to grow.Despite this progress, although the number of submissions has increased, their quality has sometimes been uneven. Our pedagogical commitment to foster philosophical writing and the philosophical inexperience of some writers has significantly impacted the work required to bring submissions to publication standard. Submissions sometimes evidence a lack of attention to formulating a tight argument, citing relevant sources, and polishing and editing the manuscript. The published style guidelines are too often ignored, creating a poor first impression with reviewers and editors. Writers are occasionally in a hurry to publish and less willing to entertain multiple revisions of their articles required to produce work of lasting value. The growing number of music education journals that publish philosophical work, while opening more fora, in some cases perversely result in ideologically driven, polemical, and philosophically uninformed articles in the name of philosophy. This is a good moment to reconsider the importance of philosophical fundamentals that should undergird our philosophizing in music education and what these mean for our academic responsibilities. To this end, we suggest several principles that need to be central to our philosophizing in music education. These principles also have broader implications for the expectations of scholarship in music education generally.WRITING PHILOSOPHYLike other subject areas in the academy, philosophy has its own intellectual structure, a canon of significant writings, its own interpretative methods, and its distinctive role and purpose. A philosophical paper in music education reads differently from papers in the history of music education, methods of teaching music, sociology of music education, empirical research in music education, multi-cultural, gender, and ethnic studies, music education curriculum building and policy making, and so on. And yet, the boundaries between these disciplines, which are artificial constructions when human knowledge is considered wholistically anyway, are somewhat porous with concepts and ideas and claims seeming to move easily from one discipline to another.To help distinguish between philosophy and other areas of study and research, it may be helpful to consider philosophy as a second-order activity. That is, first-order activity examines the raw data of research and experience and attempts to make sense of them. Using inference, pattern-seeking, deduction, hypotheses, statistical analysis, and so on, these activities result in claims, interpretations, and theories that give meaning to what we see, hear, and feel. [End Page 110]The second-order activity takes a step away from these first-order activities. It does not concern itself so much with raw data or with creating theories about them, but critically analyzes the claims and inferences that are made in regard to them. Where first-order disciplines analyze inputs from observation and experimentation, second-order disciplines analyze these analyses—that is, they function as meta-analyses. Philosophers do not need laboratories or fieldwork (which makes applications for grants to support philosophical research difficult to secure!). They need libraries... (shrink)

Background: Clinical ethics support instruments aim to support healthcare professionals in dealing with moral challenges in clinical practice. CURA is a relatively new instrument tailored to the wishes and needs of healthcare professionals in palliative care, especially nurses. It aims to foster their moral resilience and moral competences. Aim: To investigate the effects of using CURA on healthcare professionals regarding their Moral Resilience and Moral Competences. Design: Single group pre-/post-test design with two questionnaires. Methods: Questionnaires used were the Rushton (...) Moral Resilience Scale measuring Moral Resilience and the Euro-MCD, measuring Moral Competences. Respondents mainly consisted of nurses and nurse assistants who used CURA in daily practice. Forty-seven respondents contributed to both pre- and post-test with 18 months between both tests. Analysis was done using descriptive statistics and Wilcoxon signed rank tests. This study followed the SQUIRE checklist. Ethical considerations: This study was approved by the Institutional Review Board of Amsterdam UMC. Informed consent was obtained from all respondents. Results: The total Moral Resilience score and the scores of two subscales of the RMRS, that is, Responses to Moral Adversity and Relational Integrity, increased significantly. All subscales of the Euro-MCD increased significantly at posttest. Using CURA more often did not lead to significant higher scores on most (sub) scales. Conclusion: This study indicates that CURA can be used to foster moral resilience and moral competences of healthcare professionals. CURA therefore is a promising instrument to support healthcare professionals in dealing with moral challenges in everyday practice. (shrink)

Beginning in 2002, Wells Fargo began opening fraudulent accounts for unsuspecting customers. Stakeholders at every level either participated in, ignored, or tolerated the bank’s behavior that defrauded consumers on a massive scale. These unethical and well-documented schemes spanned more than a decade. Using public sources, this case recounts the events and ethical lapses that unfolded over the multiyear investigation of the Wells Fargo fraudulent accounts scandal and illuminates the general systemic failures of corporate culture and governance, public regulation, and market (...) responses to promote ethical business practices. This case provides the opportunity to consider what means for fostering ethical conduct might exist if a corporation can be big enough and rich enough that civil, criminal, regulatory, and market forces cannot deter unethical corporate practices, and if the market does not punish the corporation for a culture that promotes fraud. (shrink)

This paper argues that professionals who make boundary-related decisions should be guided by relationship-based practice. In our roles as service users and professionals, drawing from our lived experiences of professional relationships, we argue we need to move away from distance-based practice. This includes understanding the boundary stories and narratives that exist for all of us – including the people we support, other professionals, as well as the organisations and systems within which we work. When we are dealing with professional boundary (...) issues, we should centre relationship-building skills that are central to many other aspects of our work. Skills that foster relationships at all levels – between professionals, service users, and services – need to be revalued. Our final recommendation is to create, develop, and foster safer spaces within and outside of organisations, as well as inter-professionally, for the discussion and exploration of boundary-related issues and practice. We are interested in hearing from those with experiences of being marginalised by boundaries so that they can inform a reshaping of our collective ideas around boundary related practices. To foster relationship-based practices in organisations, we have outlined several recommendations here; however, we recognize that these do not go far enough, and that collective action is needed to inform systemic change. (shrink)

Yarkoni argues that one solution is to abandon quantitative methods for qualitative ones. While we agree that qualitative methods are undervalued, we argue that both are necessary for thoroughgoing psychological research, complementing one another through the use of causal analysis. We illustrate how directed acyclic graphs can bridge qualitative and quantitative methods, thereby fostering understanding between different psychological methodologies.

Following an introductory classification of prescriptive language that emphasizes the parallel between imperatives and moral language, this chapter distinguishes between the indicative and imperative moods of language. It then dismisses various attempts to account for imperatives, particularly their reduction to indicatives as well as expressivist theories like Ayer's and Stevenson's.

Throughout the biological and biomedical sciences there is a growing need for, prescriptive ‘minimum information’ (MI) checklists specifying the key information to include when reporting experimental results are beginning to find favor with experimentalists, analysts, publishers and funders alike. Such checklists aim to ensure that methods, data, analyses and results are described to a level sufficient to support the unambiguous interpretation, sophisticated search, reanalysis and experimental corroboration and reuse of data sets, facilitating the extraction of maximum value from data sets (...) them. However, such ‘minimum information’ MI checklists are usually developed independently by groups working within representatives of particular biologically- or technologically-delineated domains. Consequently, an overview of the full range of checklists can be difficult to establish without intensive searching, and even tracking thetheir individual evolution of single checklists may be a non-trivial exercise. Checklists are also inevitably partially redundant when measured one against another, and where they overlap is far from straightforward. Furthermore, conflicts in scope and arbitrary decisions on wording and sub-structuring make integration difficult. This presents inhibit their use in combination. Overall, these issues present significant difficulties for the users of checklists, especially those in areas such as systems biology, who routinely combine information from multiple biological domains and technology platforms. To address all of the above, we present MIBBI (Minimum Information for Biological and Biomedical Investigations); a web-based communal resource for such checklists, designed to act as a ‘one-stop shop’ for those exploring the range of extant checklist projects, and to foster collaborative, integrative development and ultimately promote gradual integration of checklists. (shrink)

Through consideration of another practical case, this chapter opens the way to a generalization of the method of argument outlined previously. Multilateral cases raise the question of how the interests of all parties can be resolved into a determinate moral conclusion, which brings the discussion to a standpoint that has affinities with classical utilitarianism. Like the principle of universalizability, the form of the utilitarian principle espoused is purely logical. In both cases, the moral substance comes from fleshing out the parties’ (...) actual inclinations and interests. The chapter embarks on a short survey of the challenges faced by a utilitarian system of this kind, before considering the concept of happiness, act‐utilitarianism, and rule‐utilitarianism. (shrink)

Two years ago in two articles in a thematic issue of this journal the three of us engaged in a critique of principlism. In a subsequent issue, B. Andrew Lustig defended aspects of principlism we had criticized and argued against our own account of morality. Our reply to Lustig's critique is also in two parts, corresponding with his own. Our first part shows how Lustig's criticisms are seriously misdirected. Our second and philosophically more important part picks up on Lustig's challenge (...) to us to show that our account of morality is more adequate than principlism. In particular we show that recognition of morality as public and systematic enables us to provide a far better description of morality than does principlism. This explains why we adopt the label “Dartmouth Descriptivism.”. (shrink)

BackgroundPeople with upper extremity amputations report receiving insufficient information about treatment options. Furthermore, patients commonly report not knowing what questions to ask providers. A question prompt sheet, or list of questions, can support patient-centered care by empowering patients to ask questions important to them, promoting patient-provider communication, and increasing patient knowledge. This study assessed information needs among people with UE amputations about UE vascularized composite allotransplantation and developed a UE VCA-QPS.MethodsThis multi-site, cross-sectional, mixed-methods study involved in-depth and semi-structured interviews with (...) people with UE amputations to assess information needs and develop a UE VCA-QPS. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. The initial UE VCA-QPS included 130 items across 18 topics.ResultsEighty-nine people with UE amputations participated. Most were male, had a mean age of 46 years, and had a unilateral and below-elbow amputation. Participants desired information about UE VCA eligibility, evaluation process, surgery, risks, rehabilitation, and functional outcomes. After refinement, the final UE VCA-QPS included 35 items, across 9 topics. All items were written at a ≤ 6th grade reading level. Most semi-structured interview participants reported being ‘completely’ or ‘very’ likely to use a UE VCA-QPS.ConclusionPeople with UE amputations have extensive information needs about UE VCA. The UE VCA-QPS aims to address patients’ information needs and foster patient-centered care. Future research should assess whether the UE VCA-QPS facilitates patient-provider discussion and informed decision-making for UE VCA. (shrink)

Objective: Ethical guidelines are designed to ensure benefits, protection and respect of participants in clinical research. Clinical trials must now be registered on open-access databases and provide details on ethical considerations. This systematic survey aimed to determine the extent to which recently registered clinical trials report the use of standard of care and post-trial obligations in trial registries, and whether trial characteristics vary according to setting. Methods: We selected global randomized trials registered on http://www.clinicaltrials.gov and http://www.controlled-trials.com. We searched for intervention (...) trials of HIV/AIDS, malaria, and tuberculosis from 9 October 2004, the date of the most recent version of the Helsinki Declaration, to 10 April 2007. Results: We collected data from 312 trials. Fifty-eight percent (58%, 95% CI = 53 to 64) of trial protocols report informed consent. Fifty-eight percent (58%, 95% CI = 53 to 64) of trials report active controls. Almost no trials (1%, 95% CI = 0.5 to 3) mention post-trial provisions. Most trials measure surrogate outcomes. Twenty percent (20%, 95% CI = 16 to 25) of trials measure patient-important outcomes, such as death; and the odds that these outcomes are in a low income country are five times greater than for a developed country (odds ratio (OR) 5.03, 95% CI = 2.70 to 9.35, p = < 0.001). Pharmaceutical companies are involved in 28% (CI = 23 to 33) of trials and measure surrogate outcomes more often than nonpharmaceutical companies (OR 2.45, 95% CI = 1.18 to 5.09, p = 0.31). Conclusion: We found a large discrepancy in the quality of reporting and approaches used in trials in developing settings compared to wealthier settings. (shrink)

This book undertakes a multifaceted and integrated examination of biometric identification, including the current state of the technology, how it is being used, the key ethical issues, and the implications for law and regulation. The five chapters examine the main forms of contemporary biometrics–fingerprint recognition, facial recognition and DNA identification– as well the integration of biometric data with other forms of personal data, analyses key ethical concepts in play, including privacy, individual autonomy, collective responsibility, and joint ownership rights, and proposes (...) a raft of principles to guide the regulation of biometrics in liberal democracies. Biometric identification technology is developing rapidly and being implemented more widely, along with other forms of information technology. As products, services and communication moves online, digital identity and security is becoming more important. Biometric identification facilitates this transition. Citizens now use biometrics to access a smartphone or obtain a passport; law enforcement agencies use biometrics in association with CCTV to identify a terrorist in a crowd, or identify a suspect via their fingerprints or DNA; and companies use biometrics to identify their customers and employees. In some cases the use of biometrics is governed by law, in others the technology has developed and been implemented so quickly that, perhaps because it has been viewed as a valuable security enhancement, laws regulating its use have often not been updated to reflect new applications. However, the technology associated with biometrics raises significant ethical problems, including in relation to individual privacy, ownership of biometric data, dual use and, more generally, as is illustrated by the increasing use of biometrics in authoritarian states such as China, the potential for unregulated biometrics to undermine fundamental principles of liberal democracy. Resolving these ethical problems is a vital step towards more effective regulation. (shrink)