Mental timing studies may be influenced by powerful cognitive illusions that can produce an asymmetry in their rate of progress relative to neuronal timing studies. Both types of timing research are also governed by a temporal asymmetry, expressed by the fact that the direction of causation must follow time's arrow. Here we refresh our earlier suggestion that the temporal asymmetry offers promise as a means of timing mental activities. We update our earlier analysis of Libet's data within this framework. Then (...) we consider the surprises which often occur on those rare occasions when neural timing experiments parallel mental timing work exactly. Together, these surprises and asymmetries prescribe a relentlessly meticulous and fully transparent exposition of timing methods, terms, and concepts which shuns plausible narratives, even when buttressed by rigorous formal models, unless guided by apposite empirical evidence. (shrink)

In this paper I defend Max Weber's concept of political legitimacy as a standard for the moral evaluation of states. On this view, a state is legitimate when its subjects regard it as having a valid claim to exercise power and authority. Weber’s analysis of legitimacy is often assumed to be merely descriptive, but I argue that Weberian legitimacy has moral significance because it indicates that political stability has been secured on the basis of civic alignment. Stability on this basis (...) enables all the goods of peaceful cooperation with minimal state violence and intimidation, thereby guarding against alienation and tyranny. Furthermore, I argue, since Weberian legitimacy is empirically measurable in terms that avoid controversial value judgments, its adoption would bridge a longstanding divide between philosophers and social scientists. (shrink)

:In this essay I defend an alternative account of why markets are legitimate. I argue that markets have a raison d’être—a potential to be valuable that, if fulfilled, would justify their existence. I characterize this potential in terms of the goods that are promoted by the legal protection of economic agency: resource discretion, contribution esteem, wealth, diffusion of power, and freedom of association. I argue that market institutions deliver these goods without requiring the participants to have shared ends, or shared (...) deliberation about joint ends—indeed, this feature is the source of the market’s distinctive contribution to well-being. I suggest that when markets lack legitimacy, this is because they fail to fulfill their raison d’être, or fail to be recognized as doing so. Thus, the contours of legal protection must be drawn so that these goods are realized together in a recognizable way, without sacrificing one good for the sake of others. Finally, I argue that this account is appealing because it allows regulators to consider a plurality of goods, and because it makes room for the essential role of rhetoric in securing market legitimacy. (shrink)

Objective: To examine changes in patients’ desired control of the deep brain stimulator and perception of global life control throughout DBS.Methods: A consecutive cohort of 52 patients with Parkinson’s disease was recruited to participate in a prospective longitudinal study over three assessment points. Semi-structured interviews assessing participants’ desire for stimulation control and perception of global control were conducted at all three points. Qualitative data were coded using content analysis. Visual analog scales were embedded in the interviews to quantify participants’ perceptions (...) of control over time.Results: Participants reported significant increases in their perception of global control over time and significant declines in their desired control of the stimulation. These changes were unrelated to improvements in motor symptoms. Improvements in global control were negatively correlated with a decline in desired stimulation control. Qualitative data indicate that participants have changed, nuanced levels of desired control over their stimulators. Increased global life control following DBS may be attributed to increased control over PD symptoms, increased ability to engage in valued activities, and increased overall self-regulation, while other domains related to global control remained unaffected by DBS.Conclusions: There are few empirical data documenting patients’ desire for stimulation control throughout neuromodulation and how stimulation control is related to other aspects of control despite the growing application of neuromodulation devices to treat a variety of disorders. Our data highlight distinctions in different types of control and have implications for the development of patient-controlled neurostimulation devices. (shrink)

This article theorizes “omission,” which I define as the condition of being left out of administrative apparatuses, such as civil registers, censuses, and identity management systems. According to this theory, omission is not necessarily accidental but can constitute a political strategy. When even excluded statuses can be powerful grounds for claiming rights, resources, or membership, state actors can subvert such claims-making potential by depriving unwanted populations of the practical, material capacity to establish their legal personhood through documents and records. To (...) situate omission, I develop a typology of documentary strategies additionally comprising “recognition,” “claims-making,” and “evasion.” Although my theorizing is informed by ethnographic research with unregistered families in Malaysia, scholars can apply this typology to multiperspectival, relational analyses of other empirical cases of documentary politics. Studying omissions has scholarly and ethical imperatives, not least to record the lives of populations denied, at times with existential consequences, the right to recognition. (shrink)

Karen L. Baird, Beyond reproduction: Women’s health, activism, and public policy, Madison, NJ: Fairleigh Dickinson University Press, 2009, reviewed by Amanda R. Clarke.

Wexler and Specker Sullivan (2023) note that, “unbridled speculation can imperil the credibility of neuroethics, generate unrealistic expectations amongst different stakeholders, take up time that...

According to (Bruce, V., & Young, A. (1986). Understanding face recognition. British Journal of Psychology, 77(3), 305–327. https://doi.org/10.1111/j.2044-8295.1986.tb02199.x), facial expression should not influence recognition memory for faces, implying that, in an old/new recognition task, expression should have no effect on discriminability, whether manipulated at encoding or retrieval. However, support for this assertion has been inconsistent. We conducted three old/new recognition experiments in which we manipulated facial expression (neutral, angry, sad, happy) at both encoding and test. In Experiment 1, we included (...) all expressions at both study and test. In Experiment 2, we isolated the effects of expression on encoding versus retrieval by manipulating expression only at study or only at test. In our final experiment, participants were presented with only one expression at study or test, one of which was always neutral, so we could better isolate the effect of expression at the list rather than item level (e.g. study neutral faces then tested with happy faces). Overall, our experiments revealed minimal and inconsistent effects of expression on facial recognition, therefore much more research is needed to understand how (or whether) facial expression impacts recognition. (shrink)

The number of clinical trials for experimental brain implants continues to grow, and with this growth comes an increased reliance upon patients with treatment-refractory conditions to volunteer as...

Many people are concerned about the legitimacy of digital technology companies like Meta. In this paper we show that two existing models for characterizing power – sovereign power and structural power – are inadequate when it comes to digital technology companies. This is because they fail to accommodate something crucial: the uniquely empowering nature of digital power. Companies like Meta empower users to interact by providing them with versatile systems defined by minimalist permission structures. Drawing on Searle’s theory of institutions (...) and Hart’s theory of law, we show how these permission structures facilitate the creation of new powers, as well as new institutions, through the emergence and recognition of new social norms. This means we must ask how entities that provide us with such versatile – and thus unsteerable – means of empowerment can come to be legitimate. We argue that a custodial framework for digital legitimacy can assign responsibility for the patterns of empowerment that are sustained by companies like Meta. (shrink)

In the final chapter of Speech Matters, Seana Shiffrin argues that institutions have especially stringent duties to protect speech freedoms. In this article, I develop a few lines of criticism. First, I question whether Shiffrin’s framework of justified suspended contexts is appropriate for institutional settings. Second, I challenge the presumption that the knowledge-gathering function performed by police is necessarily compromised by insincere practices. Third, I criticize Shiffrin’s characterization of the university as involving a complete repudiation of enforced consensus, and I (...) express doubts about the close connection between education and democratic legitimation that Shiffrin endorses. Finally, I raise a problem with the book’s overall argument: even if one agrees that speech freedoms are necessary for moral development, they also may be threatening to moral development. The upshot is that the protection of speech should be modulated in order to account for the potential conflicts between sincerity and other valuable ends, rather than being oriented above all to sincerity. (shrink)

There is a large body of research on conflict in nonhuman animal groups that measures the costs and benefits of intergroup conflict, and we suggest that much of this evidence is missing from De Dreu and Gross's interesting article. It is a shame this work has been missed, because it provides evidence for interesting ideas put forward in the article.

European Journal of Philosophy, EarlyView.

Patient narratives from two investigational deep brain stimulation trials for traumatic brain injury and obsessive‐compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. The early success of these interventions makes a compelling case for continued post‐trial access to these technologies. Given the centrality of personal identity to respect for persons, a failure to provide continued access can be understood to represent a metaphorical identity theft. Such a loss recapitulates the pain of (...) an individual's initial injury or illness and becomes especially tragic because it could be prevented by robust policy. A failure to fulfill this normative obligation constitutes a breach of disability law, which would view post‐trial access as a means to achieve social reintegration through this neurotechnological accommodation. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

Previous research has shown that emotionally-valenced words are given higher judgements of learning (JOLs) than are neutral words. The current study examined potential explanations for this emotional salience effect on JOLs. Experiment 1 replicated the basic emotionality/JOL effect. In Experiments 2A and 2B, we used pre-study JOLs and assessed memory beliefs qualitatively, finding that, on average, participants believed that positive and negative words were more memorable than neutral words. Experiment 3 utilised a lexical decision task, resulting in lower reaction times (...) (RTs) for positive words than for neutral words, but equivalent RTs for negative and neutral words, suggesting that processing fluency may partially account for higher JOLs for positive words, but not for negative words. Finally, we conducted a series of moderation analyses in Experiment 4 which assessed the relative contributions of fluency and beliefs to JOLs by measuring both factors in the same participants, showing that RTs made no significant contribution to JOLs for either positive or negative words. Our findings suggest that although positive words may be more fluently processed than neutral words, memory beliefs are the primary factor underlying higher JOLs for both positive and negative words. (shrink)

The empirical literature exploring lawyers and their moral decision making is limited despite the “crisis” of unethical and unprofessional behavior in the bar that has been well documented for over a decade. In particular we are unaware of any empirical studies that investigate the moral landscape of the health lawyer’s practice. In an effort to address this gap in the literature, an interdisciplinary team of researchers at Vanderbilt University designed an empirical study to gather preliminary evidence regarding the moral reasoning (...) of health care attorneys. The primary research question was how health lawyers respond when they encounter ethical or moral dilemmas in their practice for which the law fails to offer a bright-line solution. In exploring this question, we sought to understand better what motivations or influences guide action when health lawyers confront ethical quandaries, and whether there are specific differences, e.g., gender, experience, or religiosity, that are associated with specific responses to situations testing ethical or moral boundaries. (shrink)

The article Pragmatismand the Importance of Interdisciplinary Teams in Investigating Personality Changes Following DBS.

The International Criminal Tribunal for Yugoslavia was established by the UN Security Council in 1993 to prosecute persons responsible for war crimes committed in the former Yugoslavia during the Balkan wars. As the first international war crimes tribunal since the Nuremburg and Tokyo tribunals set up after WWII, the ICTY has attracted immense interest among legal scholars since its inception, but has failed to garner the same level of attention from researchers in other disciplines, notably linguistics. This represents a significant (...) research gap, as the Tribunal’s public discourse can open up interesting avenues of analysis to researchers of law, language, and legal discourse alike. On its official website, the Tribunal claims that it has “irreversibly changed the landscape of international humanitarian law” and lists six specific achievements: “Holding leaders accountable; bringing justice to victims; giving victims a voice; establishing the facts; developing international law and strengthening the rule of the law”. While a number of legal scholars have studied and critiqued the level of ‘achievement’ actually attained by the Tribunal against these metrics and others, of interest to linguists is the ways in which this work might be conveyed discursively. In this paper, we demonstrate how methods from the linguistic field of corpus-based critical discourse analysis can be utilised to explore the discursive construction of such achievements in the language of the ICTY. (shrink)

Clinical trials for acute conditions such as myocardial infarction and stroke pose challenges related to informed consent due to time limitations, stress, and severe illness. Consent processes shou...

Psychedelics have been recognized as model interventions for studying altered states of consciousness. However, few empirical studies of the shamanic state of consciousness, which is anecdotally similar to the psychedelic state, exist. We investigated the neural correlates of shamanic trance using high-density electroencephalography (EEG) in 24 shamanic practitioners and 24 healthy controls during rest, shamanic drumming, and classical music listening, followed by an assessment of altered states of consciousness. EEG data were used to assess changes in absolute power, connectivity, signal (...) diversity, and criticality, which were correlated with assessment measures. We also compared assessment scores to those of individuals in a previous study under the influence of psychedelics. Shamanic practitioners were significantly different from controls in several domains of altered states of consciousness, with scores comparable to or exceeding that of healthy volunteers under the influence of psychedelics. Practitioners also displayed increased gamma power during drumming that positively correlated with elementary visual alterations. Furthermore, shamanic practitioners had decreased low alpha and increased low beta connectivity during drumming and classical music and decreased neural signal diversity in the gamma band during drumming that inversely correlated with insightfulness. Finally, criticality in practitioners was increased during drumming in the low and high beta and gamma bands, with increases in the low beta band correlating with complex imagery and elementary visual alterations. These findings suggest that psychedelic drug-induced and non-pharmacologic alterations in consciousness have overlapping phenomenal traits but are distinct states of consciousness, as reflected by the unique brain-related changes during shamanic trance compared to previous literature investigating the psychedelic state. (shrink)

While research has focused on financial and social goals in impact investing, we add to the limited research that focuses on how individuals manage identity multiplicity, defined as three or more role identities. Based on our qualitative study of Christian impact investors, we develop a model of identity multiplicity work, explaining how individuals manage their multiple role identities to reduce identity tensions during the process of impact investing. We find individuals engaged in an interactive, ongoing three-step process of identity multiplicity (...) work: prioritizing one of their salient identities, managing their identity multiplicity interrelationships, and reinforcing their prioritized identity. Investors generally prioritized an identity that was neither financial nor social, but rather religious. We also find this identity work implemented through three novel mechanisms: shadowing, one identity casts a shadow over another thereby enabling the simultaneous pursuit of related goals; distinguishing, all identities are retained and at least a minimum threshold of role expectations are met; and surrendering, partial sacrificing of goals of one identity in favor of another identity based on an individual’s self-reflective importance of the role. Our findings offer new insights to multiple identities, impact investing and business ethics literatures. (shrink)

Coupledom and notions of intimacy and family formation with one committed partner are hallmarks of family and relationship science. Recent national surveys in the United States and Canada have found that consensually non-monogamous relationships are common, though prevalence of specific types of consensual non-monogamy are unknown. The present research draws on a United States Census based quota sample of single adults to estimate the prevalence of desire for, familiarity with, and engagement in polyamory—a distinct type of consensually non-monogamous relationship where (...) people typically engage in romantic love and sexual intimacy with multiple partners. Results show that 1 out of 6 people desire to engage in polyamory, and 1 out of 9 people have engaged in polyamory at some point during their life. Approximately 1 out of 15 people reported that they knew someone who has been or is currently engaged in polyamory. Among participants who were not personally interested in polyamory, 1 out of 7 indicated that they respect people who engage in polyamory. Few sociodemographic correlates emerged; no differences in prevalence were found based on political affiliation, income, religion, geographic region, or race/ethnicity. Sexual minorities, men, and younger adults reported greater desire to engage in polyamory. Men and people with lower education backgrounds were more likely to have previously engaged in polyamory. Given that emotional and sexual intimacy is an important part of most people’s lives, understanding the varied ways in which people navigate their intimate lives is critical for the fields of relationship, sexuality, and family science. (shrink)

Neurological diseases, particularly in the context of aging, have serious impacts on quality of life and can negatively affect bone health. The brain-bone axis is critically important for skeletal metabolism, sensory innervation, and endocrine cross-talk between these organs. This review discusses current evidence for the cellular and molecular mechanisms by which various neurological disease categories, including autoimmune, developmental, dementia-related, movement, neuromuscular, stroke, trauma, and psychological, impart changes in bone homeostasis and mass, as well as fracture risk. Likewise, how bone may (...) affect neurological function is discussed. Gaining a better understanding of brain-bone interactions, particularly in patients with underlying neurological disorders, may lead to development of novel therapies and discovery of shared risk factors, as well as highlight the need for broad, whole-health clinical approaches toward treatment. (shrink)

Statistical properties in the visual environment can be used to improve performance on visual working memory tasks. The current study examined the ability to incidentally learn that a change is more likely to occur to a particular feature dimension and use this information to improve change detection performance for that dimension . Participants completed a change detection task in which one change type was more probable than others. Change probability effects were found for color and shape changes, but not location (...) changes, and intentional strategies did not improve the effect. Furthermore, the change probability effect developed and adapted to new probability information quickly. Finally, in some conditions, an improvement in change detection performance for a probable change led to an impairment in change detection for improbable changes. (shrink)

In this paper, I argue that it is possible to have an account of shame and guilt as mature concepts in moral psychology that sit alongside immature ones. In arguing for this, I adopt the critical r...

Background The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective (...) experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking. Methods To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions. Results 36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience. Conclusions Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Anonymous Versus Open Donation and Queerness as Political:Comments on Groll's Conceiving PeopleAmanda Roth (bio)1. IntroductionIn this commentary on Daniel Groll's 2021 book Conceiving People: Genetic Knowledge and the Ethics of Sperm and Egg Donation, I examine a number of the book's major themes, especially around the idea that donor-conceived children have a significant interest in genetic knowledge and therefore, donor-conceiving parents are morally required to use an open donor.1 (...) I point to some concerns about Groll's case for this view and, in doing so, highlight the way in which taking up an LGBTQ+ perspective complicates and undermines the case against anonymous donation. The major theme of my comments is that the open versus anonymous decision is not merely an ethical decision, but a political one.My comments are organized around a few of the book's major themes, so I'll begin with laying out the most relevant themes in some detail. I then take up four points to consider in more depth. In so doing, I'll be drawing on my own scholarly perspective on issues of nontraditional reproduction, which is informed by my own social positionality in relation to family matters; this means that I (not so subtly) bring a queer perspective to the discussion of Groll's book. The through-line of my comments is this: While I agree with and appreciate much of Groll's approach, I want to stress the sense in which gamete donation is not just an ethical issue, but a political one, given its implication in bionormativity (and heteronormativity). I wonder if a deeper acknowledgment of the political nature of the issues might lead to moral conclusions that are different from those that Groll comes to, even assuming similar ethical values as starting points.2. Groll's major claims(1) Claim 1: Disclosure to donor-conceived offspring—in the usual case at least—is morally required given the intimacy argument: [End Page 166]The intimacy argument suggests that keeping "the secret" about donor conception involves intentional deception and undermines the proper intimacy of parent-child relationships (Groll 2021, 36–49).(2) Claim 2: Anonymous donor conception is (generally) morally impermissible because of the significant interest view.Donor-conceiving parents can reasonably foresee that their children will likely develop a significant interest in genetic knowledge. Significant interests "matte[r] quite a lot to the person who has [them]," "tak[e] up a space … in a person's mental economy" and/or "pla[y] a structuring role in a person's life and self-conception" (Groll 2021, 62–3). But not all donor-conceived people take such an interest in genetic information, and this information is not necessary for identity construction or psychological wellbeing (Groll 2021, 58, 61).2 Rather, multiple routes to self-identity exist, the genetic route being one among the options. Moreover, one needn't experience any loss in not taking this route; however, for those who take it up, genetic knowledge is objectively valuable and nonfungible (Groll 2021, 81–9). This is because genetic knowledge is uniquely relevant to the identity-related question "Who am I?" (Groll 2021, 112–3).3Groll argues that donor-conceiving parents should assume that their child will form such an interest because this is empirically a "good bet." Further, significant interests—at least when they are worthwhile (that is, not trivial and not morally objectionable)—are connected to one's wellbeing by the wellbeing principle: In satisfying a non-instrumental significant worthwhile interest, one's life goes better (Groll 2021, 62). It follows, then, that parents ought to choose open donors since (to simplify) parents are obligated to promote their children's wellbeing (ibid).4Counter to what one might expect, Groll does not take his ethical case against anonymous donor conception to justify prohibition of the practice. This is because wronging children in this way is within the realm of (unethical) choices we allow parents to make without societal interference.5 Moreover, to aim regulation at anonymous donor conception could reinforce bionormativity and target already marginalized families for special negative attention (Groll 2021, chapter 8).(3) "Claim" 3: Groll's own personal... (shrink)

ZusammenfassungIm gesundheitspolitischen Kontext werden die internationale Rekrutierung und Migration von Ärztinnen, Ärzten und Personal in Gesundheitsfachberufen seit langem diskutiert. Diese Studie untersucht die thematischen Schwerpunkte dieser Debatten um ethische Aspekte der internationalen Rekrutierung in der Public Health Literatur mit Peer Review. Unser Artikel diskutiert, welche Implikationen für gesundheitspolitische Maßnahmen bezogen auf gesundheitliche Ungleichheiten diese fachspezifischen akademischen Diskussionen aufwerfen. Wir erstellten eine qualitative Übersichtsarbeit basierend auf Literaturrecherchen zu fachspezifischen internationalen Studien mit Schwerpunkt auf theoriebasierten und qualitativen Forschungsdesigns in den Datenbanken PubMed (...) und Web of Science. In die Analyse einbezogene Artikel wurden mit der Critical Appraisal Skills Program Checkliste für qualitative Forschung bewertet und anhand eines thematischen Inhaltsanalyseverfahrens auf gemeinsame Muster untersucht und kodiert. 17 Artikel wurden in die Analyse einbezogen. Diese Artikel befassten sich mehrheitlich entweder mit Pflegeberufen oder mit Ärztinnen bzw. Ärzten, und wurden verfasst aus Perspektiven des globalen Nordens. Die thematische Inhaltsanalyse ergab, dass ethische Aspekte generell zusammen mit einer allgemeinen Übersicht über Gesundheitssysteme und Ungleichheiten zwischen Ländern genannt wurden und Migration zwischen Ländern stärker im Fokus stand als Migration innerhalb einzelner Landesgrenzen. Vorgeschlagene Lösungsansätze in der Public Health Literatur sind meist ökonomischer Natur und stellen globale Finanzausgleiche zwischen Ländern oder nationale Verbesserung von Arbeitsbedingungen zur Diskussion. Möglichkeiten der Evaluation solcher Lösungen werden selten vertieft. Insgesamt fokussiert diese fachspezifische Diskussion mehrheitlich auf einen systemischen Ansatz und problematisiert die Migration von Personal in Gesundheitsfachberufen sowie von Ärztinnen und Ärzten. Unsere Ergebnisse deuten darauf hin, dass die akademische Forschung im gesundheitswissenschaftlichen und medizinischen Feld derzeit nur Vorschläge für politische Maßnahmen formuliert, die nicht grundsätzlich die globale Ordnung der Gesundheitssysteme in Frage stellen. Die Diskussion scheint daher geeignet zu sein, ein Bewusstsein für Benachteiligungen zu schaffen, ohne diese radikal beseitigen zu wollen. Eine vertiefte Auseinandersetzung mit Aspekten von Gender, Ethnizität und übergeordneten intersektionalen Bedingungen sowie Auswirkungen für und von internationaler Rekrutierung und Migration könnte die Diskussion schärfen. (shrink)

Background Informed consent is a requirement for all research. It is not, however, clear how much information is sufficient to make an informed decision about participation in research. Information on an online questionnaire about childhood development was provided through an unfolding electronic participant sheet in three levels of information. Methods 552 participants, who completed the web-based survey, accessed and spent time reading the participant information sheet (PIS) between July 2008 and November 2009. The information behaviour of the participants was investigated. (...) The first level contained less information than might be found on a standard PIS, the second level corresponded to a standard PIS, and the third contained more information than on a standard PIS. The actual time spent on reading the information provided in three incremental levels and the participants' evaluation of the information were calculated. Results 77% of the participants chose to access the first level of information, whereas 12% accessed the first two levels, 6% accessed all three levels of information and 23% participated without accessing information. The most accessed levels of information were those that corresponded to the average reading times. Conclusion The brief information provided in the first level was sufficient for participants to make informed decisions, while a sizeable minority of the participants chose not to access any information at all. This study adds to the debate about how much information is required to make a decision about participation in research and the results may help inform the future development of information sheets by providing data on participants' actual needs when deciding about questionnaire surveys. (shrink)

Community consultation and public disclosure are key components of exception from informed consent (EFIC) trials, and mandated by the US Department of Health and Human Services (DHHS) and the Food and Drug Administration (FDA). However, it is not known how demographic characteristics of community members impact their willingness to participate in such studies. The purpose of this study was to evaluate the demographics of community members regarding their attitudes towards participation in an EFIC trial; participation of relatives in such a (...) trial; the need for emergency medical research; and, the execution of the trial in their community. This analysis is focused on the minority of individuals who have unfavorable views towards participation and emergency care research so that we can better understand their needs and concerns. Multinomial logistic regression analysis of responses to a survey distributed as part of the community consultation campaigns for a large, multicenter EFIC trial in trauma patients. The surveys were distributed to community members in the catchment areas of 77 trauma centers. A total of 88,711 responses to four separate survey questions were received and analyzed, along with demographics of the survey respondents. 13,201 of 22,441 respondents (58.8%) indicated they would want to be entered in the trial. 3,625 (16.2%) responded they would not want to be enrolled and 5,615 (25.1%) responded “I don’t know” or “I don’t want to answer”. 19,430 of 22,329 (87.0%) responded they believe that emergency medical research was necessary and 19,555 of 22,324 (87.6%) believed that this study should be done in their community. Individuals who responded “No” or “I don’t know”’ to the questions were younger, female, non-white, had a lower education level, and unknown or lower household income. The pattern was broadly similar for people who responded “I don’t know” or “I don’t want to answer”, albeit with some differences. Community consultation is a key component of establishing trust with the community in which a given study will be conducted. Understanding which individuals, or groups of individuals, are reluctant to engage is important. (shrink)

The translational research community, in general, and the Clinical and Translational Science Awards (CTSA) community, in particular, share the vision of repurposing EHRs for research that will improve the quality of clinical practice. Many members of these communities are also aware that electronic health records (EHRs) suffer limitations of data becoming poorly structured, biased, and unusable out of original context. This creates obstacles to the continuity of care, utility, quality improvement, and translational research. Analogous limitations to sharing objective data in (...) other areas of the natural sciences have been successfully overcome by developing and using common ontologies. This White Paper presents the authors’ rationale for the use of ontologies with computable semantics for the improvement of clinical data quality and EHR usability formulated for researchers with a stake in clinical and translational science and who are advocates for the use of information technology in medicine but at the same time are concerned by current major shortfalls. This White Paper outlines pitfalls, opportunities, and solutions and recommends increased investment in research and development of ontologies with computable semantics for a new generation of EHRs. (shrink)

Journal editors have a large amount of power to advance open science in their respective fields by incentivising and mandating open policies and practices at their journals. The Data PASS Journal Editors Discussion Interface (JEDI, an online community for social science journal editors: www.dpjedi.org) has collated several resources on embedding open science in journal editing (www.dpjedi.org/resources). However, it can be overwhelming as an editor new to open science practices to know where to start. For this reason, we created a guide (...) for journal editors on how to get started with open science. The guide outlines steps that editors can take to implement open policies and practices within their journal, and goes through the what, why, how, and worries of each policy and practice. This manuscript introduces and summarizes the guide (full guide: https://doi.org/10.31219/osf.io/hstcx). (shrink)