The goal of this paper is to offer, in straight forward terms, some practical insight into distributed data surveillance. I will use the software project Carnivore as a case study. Carnivore is a public domain riff on the U.S. Federal Bureau of Investigation’s software “Carnivore,” which was developed to perform electronic wiretaps of email. As founder of the Radical Software Group (RSG), and lead developer on the Carnivore project, I will describe the technological, philosophical, and political reasons for (...) launching the project. I will also offer an account of the development cycle of the core engine, identify trends in “client” interface designs, and present a series of design challenges that still remain. (shrink)

Background In earlier work, we found important selection biases when we tried to obtain consent for participation in a national stroke registry. Recognizing that not all registries will be exempt from requiring consent for participation, we examine here in greater depth the reasons for the poor accrual of patients from a systems perspective with a view to obtaining as representative sample as possible. Methods We determined the percent of eligible patients who were approached to participate and, among those approached, (...) the percent who actually consented to participate. In addition we examined the reasons why people were not approached or did not consent and the variation across sites in the percent of patients approached and consented. We also considered site variation in restrictions on the accrual and data collection process imposed by either the local research ethics board or the hospital. Results Seventy percent of stroke patients were approached, with wide variations in approach rates across sites (from: 41% to 86%), and considerable inter-site variation in hospital policies governing patient accrual. Chief reasons for not approaching were discharge or death before being approached for consent. Seventeen percent of those approached refused to participate (range: 5% to 75%). Finally, 11% of those approached did not participate due to language or communication difficulties. Conclusion We found wide variation in approach and agree rates across sites that were accounted for, in part, by different approaches to accrual and idiosyncratic policies of the hospitals. This wide variation in approach and agree rates raises important challenges for research ethics boards and data protection authorities in determining when to waive consent requirements, when to press for increased quality control, when to permit local adaptation of the consent process, and when to permit alternatives to individual express consent. We offer several suggestions for those registries that require consent for participation. (shrink)

In order to deal with high-dimensional distributed data, this article develops a novel and communication-efficient approach for sparse and high-dimensional data with the penalized quantile regression. In each round, the proposed method only requires the master machine to deal with a sparse penalized quantile regression which could be realized fastly by proximal alternating direction method of multipliers algorithm and the other worker machines to compute the subgradient on local data. The advantage of the proximal ADMM algorithm (...) is that it could make every parameter of iteration to have closed formula even in high-dimensional case, which greatly improves the speed of calculation. As for the communication efficiency, the proposed method does not sacrifice any statistical accuracy and provably improves the estimation error obtained by centralized method, provided the penalty levels are chosen properly. Moreover, the asymptotic properties of the proposed estimation and the convergence of the algorithm are convincible. Especially, it presents extensive experiments on both the numerical simulations and the HIV drug resistance data analysis, which all confirm the significant efficiency of our proposed method in quantile regression for distributed data by comparative and empirical analysis. (shrink)

This paper is concerned with the estimation of the Weibull generalized exponential distribution parameters based on the adaptive Type-II progressive censored sample. Maximum likelihood estimation, maximum product spacing, and Bayesian estimation based on Markov chain Monte Carlo methods have been determined to find the best estimation method. The Monte Carlo simulation is used to compare the three methods of estimation based on the ATIIP-censored sample, and also, we made a bootstrap confidence interval estimation. We will analyze data related to (...) the distribution about single carbon fiber and electrical data as real data cases to show how the schemes work in practice. (shrink)

This study addresses the problem of output quasisynchronization for coupled complex-valued memristive reaction-diffusion complex networks via the distributed event-triggered control scheme. First, by using the separate method, set value mapping, and intermediate value theorem, the complex-valued memristive reaction-diffusion complex networks can be transferred into two semi-uncertain real-valued reaction-diffusion complex networks. Second, a distributed output piecewise event-triggered control scheme with spatial sampled-data is first proposed including a spatial sampling event-triggered generator and spatiotemporal sampling state feedback controller. Furthermore, this (...) scheme can effectively save the measurement resources and lower the update rate of controllers in spatial and time domain. Third, the synchronization analysis is considered by utilizing an appropriate Lyapunov function, the Halanay inequality, and the improved Wirtinger inequality. Subsequently, several output event-triggered quasisynchronization criteria are derived. The relations among event trigger conditions, spatial sampling interval, convergence rate, and control gain are given by rigorous mathematical derivation. Finally, multiple simulations are compared to substantiate the validation of the OPETC scheme. (shrink)

A simple numerical procedure is presented for the problem of estimating the parameters of models for the distribution of eggs oviposited in a host. The modelling is extended to incorporate both host density and time dependence to produce a remarkably parsimonious structure with only seven parameters to describe a data set of over 3,000 observations. This is further refined using a mixed model to accommodate several large outliers. Both models show that the level of superparasitism declines with increasing host (...) density, and the rate declines over time. It is proposed that the differing behaviours represented by the mixed model may reflect a balance between behavioural strategies of different selective benefit. (shrink)

A simple numerical procedure is presented for the problem of estimating the parameters of models for the distribution of eggs oviposited in a host. The modelling is extended to incorporate both host density and time dependence to produce a remarkably parsimonious structure with only seven parameters to describe a data set of over 3,000 observations. This is further refined using a mixed model to accommodate several large outliers. Both models show that the level of superparasitism declines with increasing host (...) density, and the rate declines over time. It is proposed that the differing behaviours represented by the mixed model may reflect a balance between behavioural strategies of different selective benefit. (shrink)

A simple numerical procedure is presented for the problem of estimating the parameters of models for the distribution of eggs oviposited in a host. The modelling is extended to incorporate both host density and time dependence to produce a remarkably parsimonious structure with only seven parameters to describe a data set of over 3,000 observations. This is further refined using a mixed model to accommodate several large outliers. Both models show that the level of superparasitism declines with increasing host (...) density, and the rate declines over time. It is proposed that the differing behaviours represented by the mixed model may reflect a balance between behavioural strategies of different selective benefit. (shrink)

A simple numerical procedure is presented for the problem of estimating the parameters of models for the distribution of eggs oviposited in a host. The modelling is extended to incorporate both host density and time dependence to produce a remarkably parsimonious structure with only seven parameters to describe a data set of over 3,000 observations. This is further refined using a mixed model to accommodate several large outliers. Both models show that the level of superparasitism declines with increasing host (...) density, and the rate declines over time. It is proposed that the differing behaviours represented by the mixed model may reflect a balance between behavioural strategies of different selective benefit. (shrink)

This paper investigates a distributed energy management strategy for the port power system under false data injection attacks. The attacker can tamper with the interaction information of energy equipment, penetrate the boundary between port information system and port power system, and cause serious operation failure of port energy equipment. Firstly, a hierarchical topology is proposed to allocate the security resources of the port power system. Secondly, by reconstructing the topological structure of the port information system, the robustness of (...) the information system is improved, and the impact of false data injection attacks on the port power system is reduced, which realizes secure distributed energy management of the port power system. Finally, the simulation results show the effectiveness of the proposed strategy, and the defense capability of the port power system is improved. (shrink)

BackgroundIncreasingly, hospitals and research institutes are developing technical solutions for sharing patient data in a privacy preserving manner. Two of these technical solutions are homomorphic encryption and distributed ledger technology. Homomorphic encryption allows computations to be performed on data without this data ever being decrypted. Therefore, homomorphic encryption represents a potential solution for conducting feasibility studies on cohorts of sensitive patient data stored in distributed locations. Distributed ledger technology provides a permanent record on (...) all transfers and processing of patient data, allowing data custodians to audit access. A significant portion of the current literature has examined how these technologies might comply with data protection and research ethics frameworks. In the Swiss context, these instruments include the Federal Act on Data Protection and the Human Research Act. There are also institutional frameworks that govern the processing of health related and genetic data at different universities and hospitals. Given Switzerland’s geographical proximity to European Union (EU) member states, the General Data Protection Regulation (GDPR) may impose additional obligations.MethodsTo conduct this assessment, we carried out a series of qualitative interviews with key stakeholders at Swiss hospitals and research institutions. These included legal and clinical data management staff, as well as clinical and research ethics experts. These interviews were carried out with two series of vignettes that focused on data discovery using homomorphic encryption and data erasure from a distributed ledger platform.ResultsFor our first set of vignettes, interviewees were prepared to allow data discovery requests if patients had provided general consent or ethics committee approval, depending on the types of data made available. Our interviewees highlighted the importance of protecting against the risk of reidentification given different types of data. For our second set, there was disagreement amongst interviewees on whether they would delete patient data locally, or delete data linked to a ledger with cryptographic hashes. Our interviewees were also willing to delete data locally or on the ledger, subject to local legislation.ConclusionOur findings can help guide the deployment of these technologies, as well as determine ethics and legal requirements for such technologies. (shrink)

Data mining technology is an effective knowledge mining and data relationship induction technology based on massive data, which is widely used in data analysis in many fields. In order to improve the utilization effect of students’ performance and meet the teaching needs of modern education, data mining technology can be applied to the existing performance database to mine the data information and treatment. Data mining technology is used to analyse and process the (...) class='Hi'>data stored in the student achievement management system, which provides the basis for improving the teaching quality and optimizing the teaching resources. Based on the analysis of the relevant data of large-scale English test results, this paper finds out the relevant rules that affect college English test results, forms the corresponding performance prediction rules, uses data mining technology to more comprehensively analyse the factors that affect students’ performance, establishes a model, and uses data mining tools to mine and analyse students’ English test data. It is of great practical significance to select the model with high accuracy, further optimize the parameters, make good use of the data, and then take targeted measures to guide the teaching reform, help students make more efficient learning plans, and improve and perfect the existing problems in teaching. (shrink)

Power provision is coming to be the most important constraint to data center development. The efficient management of power consumption according to the loads of the data center is urgent. As the load for every application hosted in every server node of the data center and corresponding Service Level Agreement requirements can be quite different, it is hard to deploy a power strategy at application. The asynchronies and abruptness characteristics of workload fluctuation make power management policymaking using (...) periodic resource scheduling method invalid. In this article, the design and implementation of the request–response distributed power management scheme is elaborated. Bound by linear time complexity, the method proposed integrates dynamic voltage/frequency scaling, power-on–power-off, and virtual machine migration mechanisms and dynamically optimizes the power consumption of a cloud data center. The significant advantage of the scheme is that it does not need synchronous scheduling between all SNs. Simulation results showed that the scheme could effectively decrease the power consumption of the data center, with a tiny reduction in performance as centralized control methods. (shrink)

In 2017 Ploug and Holm argued that anonymizing individuals in the Danish circumcision registry was insufficient to protect these individuals from what they regard as the potential harms of being in the registry. We argue that Ploug and Holm’s fears in each of the areas are misguided, not supported by the evidence, and could interfere with the gathering of accurate data. The extent of the risks and harms associated with ritual circumcision is not well known. The anonymized (...) personal health data supplemented with the circumcision registry will enable more precise research into the medical consequences of ritual circumcision, and allow parents to make more fully informed decisions about circumcision with minimal, if any, adverse consequences. (shrink)

In response to the big data era trend, statistics has become an indispensable part of mathematics education in junior high school. In this study, a pre-test and a post-test were developed for the six attributes of the data distribution characteristic. This research then used the cognitive diagnosis model to learn about the poorly mastered attributes and to verify whether cognitive diagnosis can be used for targeted intervention to improve students' abilities effectively. One hundred two eighth graders participated in (...) the experiment and were divided into two groups. Among them, the intervention materials read by the experimental group students only contained attributes that they could not grasp well. In contrast, the reading materials of the control group were non-targeted. The results of the study showed the following: The variance and the weighted average were poorly mastered by students in the pre-test; compared with the control group, the average test score of the experimental group was significantly improved; in terms of attributes, the experimental group students' mastery of variance and the weighted average was significantly improved than the pre-test, while the control group's mastery was not. Based on this, some teaching suggestions were put forward. (shrink)

Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male (...) childhood circumcisions in Denmark. The main purpose of the register was to enable future research into the consequences of ritual circumcision. This article is a study into the case of the Danish Circumcision Registry. We show that such a registry may lead to various forms of harm such as 1) overreaching social pressure, 2) stigmatization, 3) medicalization of a religious practice, 4) discrimination, and 5) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research into registries. We finally sketch a new model of informed consent – Meta consent – aimed at striking a balance between the interests in promoting research and at the same time protecting the individual. Research participants may have a strong and legitimate interest in deciding whether or not their data should be collected and used for registry-based research whether or not their data is anonymised. (shrink)

The quality of the products coming from different lines of production requires some tests called comparative life tests. For lines having the same facility, the lifetime of the product is distributed by Burr XII, the lifetime distribution, and units are tested under type-I generalized hybrid censoring scheme. The observed censoring data are used under maximum likelihood and the Bayes method to estimate the model parameters. The theoretical results are discussed and assessed through data analysis and Monte Carlo (...) simulation study. Finally, we reported some brief comments obtained from numerical computation. (shrink)

We have seen through many examples that data science and artificial intelligence can reinforce structural inequalities like sexism and racism. Data is power, and that power is distributed unequally. This book offers a vision for a feminist data science that can challenge power and work towards justice. This book takes a stand against a world that benefits some (including the authors, two white women) at the expense of others. It seeks to provide concrete steps for (...) class='Hi'>data scientists seeking to learn how feminism can help them work towards justice, and for feminists seeking to learn how their own work can carry over to the growing field of data science. It is addressed to professionals in all fields where data-driven decisions are being made, as well as to communities that want to better understand the data that surrounds them. It is written for everyone who seeks to better understand the charts and statistics that they encounter in their day-to-day lives, and for everyone who seeks to better communicate the significance of such charts and statistics to others. This is an example-driven book written with a broad audience of scholars, students, and practitioners in mind. It offers a way of thinking about data, both their uses and their limits, that is informed by direct experience, by a commitment to action, and by the ideas associated with intersectional feminist thought. (shrink)

For decision making in government, it is necessary to have well-structured sources of information. In several countries, it is difficult to access government data as the information are dispersed, disconnected, and poorly structured. For this reason, this work presents a framework to gather, unify, and enrich missing person data from distributed web sources. The framework allows inserting new tasks specific to the user’s domain to improve data quality. In this study, Brazilian missing person data from (...) non-governmental organizations (NGOs) and governmental websites were collected and semantically enriched. To enhance the understanding of the gathered missing people cases, we create interpretive models using machine learning techniques to extract knowledge and to encourage the use of standards for publishing the data that are frequently ignored by organizations, hindering analysis and decision-making on data. After the collection and semantic enrichment process, there was an increase of approximately 11% in the data present in the base. Also, the mining process evidenced the disappearance and reappearance of a person in Brazil according to several factors such as age, state initiatives, skin tone, hair colors, etc. (shrink)

The human conceptual system comprises simulated information of sensorimotor experience and linguistic distributional information of how words are used in language. Moreover, the linguistic shortcut hypothesis predicts that people will use computationally cheaper linguistic distributional information where it is sufficient to inform a task response. In a pre‐registered category production study, we asked participants to verbally name members of concrete and abstract categories and tested whether performance could be predicted by a novel measure of sensorimotor similarity (based on an 11‐dimensional (...) representation of sensorimotor strength) and linguistic proximity (based on word co‐occurrence derived from a large corpus). As predicted, both measures predicted the order and frequency of category production but, critically, linguistic proximity had an effect above and beyond sensorimotor similarity. A follow‐up study using typicality ratings as an additional predictor found that typicality was often the strongest predictor of category production variables, but it did not subsume sensorimotor and linguistic effects. Finally, we created a novel, fully grounded computational model of conceptual activation during category production, which best approximated typical human performance when conceptual activation was allowed to spread indirectly between concepts, and when candidate category members came from both sensorimotor and linguistic distributional representations. Critically, model performance was indistinguishable from typical human performance. Results support the linguistic shortcut hypothesis in semantic processing and provide strong evidence that both linguistic and grounded representations are inherent to the functioning of the conceptual system. All materials, data, and code are available at https://osf.io/vaq56/. (shrink)

The clinical introduction of medical devices often occurs with relatively little oversight, regulation and (long-term) follow-up. Some recent controversies underscore the weaknesses of the current regime, such as the complications surrounding the metal-on-metal hip implants and the scandal surrounding the global breast implant scare of silicone implants made by France's Poly Implant Prothese (PIP) Company. The absence of national registries hampered the collection of reliable information on the risks and harms of the PIP breast implants. To warrant long-term safety, a (...) case can be made for mandatory post-marketing surveillance by means of the establishment of compulsory registries. In this edition of Public Health Ethics, Schofield calls for debate on how such a registry system should be initiated and maintained and how it would relate to the ethical requirement of consent. Here we use breast implant registries as a case to discuss whether and when a so-called ‘thick opt-out’ would be an appropriate method to include people in medical device registries. We conclude that a thick opt-out procedure for medical device registries is only justifiable in cases where inclusion does not involve burdens (or very low), when it does not involve a sensitive subject and when the data are stored anonymously (or at least not directly linked to the medical record). Otherwise, inclusion should be sought by means of an opt-in. (shrink)

There is an increasing interest in expanding the one-parameter Lindley distribution to two-parameter, three-parameter, and five-parameter. The univariate one-parameter Lindley distribution is still one of the most applicable distributions in data analysis especially in lifetime data. Modeling dependent random quantities required bivariate parametric probability distributions. This study presents a new bivariate three-parameter probability distribution called bivariate modified Lindley distribution. The one-parameter modified Lindley distribution is used as a base line to construct the new model. Its statistical properties including (...) cumulative function, density function, marginals, moments, conditional distributions, and copula are discussed. Simulation is constructed to declare theoretical properties, to show the flexibility of the new model and to investigate the goodness of fit. Two sets of real data, financial data and UEFA Champion’s League data, are used to show the applicability of the proposed model for different types of data. (shrink)

Extreme events, which are usually characterized by generalized extreme value models, can exhibit long-term memory, whose impact needs to be quantified. It was known that extreme recurrence intervals can better characterize the significant influence of long-term memory than using the GEV model. Our statistical analyses based on time series datasets following the Lévy stable distribution confirm that the stretched exponential distribution can describe a wide spectrum of memory behavior transition from exponentially distributed intervals to power-law distributed ones, extending (...) the previous evaluation of the stretched exponential function using Gaussian/exponential distributed random data. Further deviation and discussion of a historical paradox are also provided, based on the theoretical analysis of the Bayesian law and the stretched exponential distribution. (shrink)

We show in rather informal terms how witness sets can be useful in both explicating some basic intuitions about scope and understanding how particular denotational semantic differences between noun phrases affect their abilities to bear out certain scopal patterns. More generally we suggest that the usual notion of scope needs to be factored into variation distributivity and maximality. This part lays some groundwork for several of the subsequent chapters and is thus of interest to all readers. The second part shows (...) that already in this initial raw form the above insights can be applied to make a novel claim concerning the availability of so-called branching readings. In logical terms a branching reading can be defined for any sentence with a subject and a direct object. However speakers of English accept only a fraction of these readings, so the question arises how the data can be predicted from the meanings of the participating quantifiers and the syntactic structure of the sentence. We propose that thinking about the behavior of quantifiers along the lines introduced in the first part leads to a simple answer to this question. (shrink)

A new three-parameter extension of the generalized-exponential distribution, which has various hazard rates that can be increasing, decreasing, bathtub, or inverted tub, known as the Marshall-Olkin generalized-exponential distribution has been considered. So, this article addresses the problem of estimating the unknown parameters and survival characteristics of the three-parameter MOGE lifetime distribution when the sample is obtained from progressive type-II censoring via maximum likelihood and Bayesian approaches. Making use of the s-normality of classical estimators, two types of approximate confidence intervals are (...) constructed via the observed Fisher information matrix. Using gamma conjugate priors, the Bayes estimators against the squared-error and linear-exponential loss functions are derived. As expected, the Bayes estimates are not explicitly expressed, thus the Markov chain Monte Carlo techniques are implemented to approximate the Bayes point estimates and to construct the associated highest posterior density credible intervals. The performance of proposed estimators is evaluated via some numerical comparisons and some specific recommendations are also made. We further discuss the issue of determining the optimum progressive censoring plan among different competing censoring plans using three optimality criteria. Finally, two real-life datasets are analyzed to demonstrate how the proposed methods can be used in real-life scenarios. (shrink)

This article extends property-owning democracy to the digital realm and introduces “data-owning democracy,” a new political economic regime characterized by the wide distribution of data as capital among citizens. Drawing on republican theory and acknowledging data's unique role in the digital economy, it proposes a two-tier model that combines different modes of data ownership and corresponding rights. The first layer of “data-owning democracy” is characterized by a digital public infrastructure that enables citizens to collectively generate (...) data and have a say in how their citizen data are used. In the second layer, individuals automatically receive machine-readable copies of their data whenever they are generated—a slightly more advanced form of the European Union's existing right to data portability (Art. 20). With its focus on empowerment, data-owning democracy is designed to be complementary to existing data protection regulations. It also illustrates how political theory more broadly, and republican theory specifically, can be instructive for specifying the normative components of a new political economy dealing with questions of empowerment and digital rights. (shrink)

Several high-profile episodes have recently thrust drug safety and the pharmaceutical industry's practices into the spotlight. Merck's recall of the drug Vioxx, for instance, was a major news event. GlaxoSmithKline's suppression of data linking suicidal behavior among children to Paxil also galvanized tremendous public attention. What differentiates these events from the usual evolving process of scientific knowledge, and marks them with an aura of “scandal,” are questions about the propriety of corporate behavior. Who knew what, and when did they (...) know it? Concerns are growing about the potential for industry sponsors to suppress negative results from clinical trials research. Scientists, medical journal editors, legislators, and the public have called for greater transparency in the conduct of clinical trials and the drug approval process. (shrink)

Several high-profile episodes have recently thrust drug safety and the pharmaceutical industry's practices into the spotlight. Merck's recall of the drug Vioxx, for instance, was a major news event. GlaxoSmithKline's suppression of data linking suicidal behavior among children to Paxil also galvanized tremendous public attention. What differentiates these events from the usual evolving process of scientific knowledge, and marks them with an aura of “scandal,” are questions about the propriety of corporate behavior. Who knew what, and when did they (...) know it? Concerns are growing about the potential for industry sponsors to suppress negative results from clinical trials research. Scientists, medical journal editors, legislators, and the public have called for greater transparency in the conduct of clinical trials and the drug approval process. (shrink)

Distributed cognition provides a theoretical framework for the analysis of data from socio-technical systems within a problem-solving framework. While the approach has been applied in tightly constrained activity domains, composed of well-structured problems and highly organised infrastructures, little is known about its use in other forms of activity systems. In this paper, we explore how distributed cognition could be applied in less well-constrained settings, with ill-structured problems and loosely organised resource sets, critically reflecting on this using (...) class='Hi'>data from a field study. The findings suggest that the use of distributed cognition in an augmented form can be useful in the analysis of a wide range of activity systems in loosely coupled settings. (shrink)

To believe that every single scientist ought to be individually engaged in ethical thinking in order for science to be responsible at a collective level may be too demanding, if not plainly unrealistic. In fact, ethical labor is typically distributed across different kinds of scientists within the scientific community. Based on the empirical data collected within the Horizon 2020 ‘RRI-Practice’ project, we propose a classification of the members of the scientific community depending on their engagement in this collective (...) activity. Our classification offers, on the one hand, a model of how the ethical aspects of science are taken into consideration by scientists and, on the other, some indications on how to institutionalize ethics in science. (shrink)

Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I suggest that quality with regard to diagnosis and treatment is an (...) inherent, morally normative requirement of health care, and argue that quality concerns in this sense may be balanced with privacy concerns. (shrink)

ArgumentSince the 1970s, Danish population registries were increasingly used for research purposes, in particular in the health sciences. Linked with a large number of disease registries, these data infrastructures became laboratories for the development of both information technology and epidemiological studies. Denmark's system of population registries had been centralized in 1924 and was further automated in the 1960s, with individual identification numbers (CPR-numbers) introduced in 1968. The ubiquitous presence of CPR-numbers in administrative routines and everyday lives created a continually (...) growing data archive of the entire population. The resulting national-level database made possible unprecedented record linkage, a feature epidemiologists and biomedical scientists used as a resource for population health research. The specific assemblages that emerged with their practices of data mining were constitutive of registry-based epidemiology as a style of thought and of a distinct relationship between science, citizens, and the state that emerged as “Scandinavian.”. (shrink)

Big data, big impact -- Values and actions -- Current practices -- Aligning values and actions.

Over the past 15 years, there have been two increasingly popular approaches to the study of meaning in cognitive science. One, based on theories of embodied cognition, treats meaning as a simulation of perceptual and motor states. An alternative approach treats meaning as a consequence of the statistical distribution of words across spoken and written language. On the surface, these appear to be opposing scientific paradigms. In this review, we aim to show how recent cross-disciplinary developments have done much to (...) reconcile these two approaches. The foundation to these developments has been the recognition that intralinguistic distributional and sensory-motor data are interdependent. We describe recent work in philosophy, psychology, cognitive neuroscience, and computational modeling that are all based on or consistent with this conclusion. We conclude by considering some possible directions for future research that arise as a consequence of these developments. (shrink)

This book addresses a range of relevant theoretical issues, including the possibility of an interpersonally comparable measure of well-being, or “utility” metric; the moral value of equality, and how that bears on the form of the social welfare function; social choice under uncertainty; and the possibility of integrating considerations of individual choice and responsibility into the social-welfare-function framework. This book also deals with issues of implementation, and explores how survey data and other sources of evidence might be used to (...) calibrate both a utility metric and a social welfare function, and whether distributive goals are ever best pursued through regulation rather than the tax system. In working through this range of theoretical and practical issues, the book draws from a wide variety of literatures, including philosophical scholarship on equality, responsibility, the nature of well-being, and personal identity over time; the social choice literature within economics; applied economic literatures concerning the measurement of inequality and poverty; legal and policy-analysis scholarship on cost-benefit analysis, environmental justice, and the choice between regulation and taxation; and the burgeoning field of “happiness studies”. (shrink)

Cancer registries are an important part of the public health infrastructure, since they allow to monitor the temporal trends of this illness as well as facilitate epidemiological research. In order to effectively set up such registries, it is necessary to create a system of data collection that permits to record health-related information from patients who are diagnosed with cancer. Given the sensitive nature of such data, it is debated whether their recording should be based on consent or whether (...) alternative arrangements are possible (eg, opt-out systems where information is automatically collected but patients can later withdraw). In the recent reform of the Swiss cancer registration legislation, the lawmaker set out to implement rules about the recording of data in cancer registries that would allegedly go beyond a consent-based model, in order to balance accurate registration with respect of patient rights. However, by analysing the operational norms of the new legislation and comparing them with those of other systems, it emerges that the Swiss rules de facto closely resemble a system of registration based on informed consent—in partial contradiction with the objective pursued by the lawmaker. In this paper, we show how the details of a policy are crucial to determine its true nature and we highlight some critical elements—from an ethical standpoint—of the recently reformed Swiss policy on cancer registration. (shrink)

Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over (...) personal data, as well as more democratic governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to steer data use according to their motivations, preferences, and concerns. Policy makers can promote this model by recognizing citizens’ rights to access and to obtain a copy of their own data, and by funding distributed data infrastructures piloting new data aggregation models. (shrink)

Attitudes toward repository projects cannot be explained merely on the basis of perceived risks, trust, or technical information. Issues of justice and fairness frequently arise when burdens and benefits are to be allocated. A fair distribution across the various parts of a given territory of the waste to be stored is unlikely to be accomplished as it is contingent on appropriate geological formations and other factors. The process by which the specific distribution is determined and accomplished needs to be taken (...) into account as well. Thus, justice evaluations of both the distributive outcome and the process itself, by which the outcome is accomplished, are likely to affect people’s attitudes toward and acceptance of siting decisions. Data from a number of methodically different studies conducted over the last eight years on site selection in Switzerland suggest that a fair procedure is more essential than a fair distribution to a consensus about the decisions made. As a consequence, even normative assessments of the fairness of a distribution of nuclear waste must consider procedural justice as a valuable indicator, independently of the particular shape of the distribution. However, contextual factors, such as the wider nuclear energy strategy of a country, may compete with procedural fairness in terms of importance. Even though fairness is a requirement it does not guarantee acceptance. It may, however, enhance acceptability from a moral standpoint. (shrink)

The primary means for psychotherapy interaction is language. Since talk-in-interaction is accomplished and rendered interpretable by the systematic use of linguistic resources, this study focuses on one of the central issues in psychotherapy, namely agency, and the ways in which linguistic resources, person references in particular, are used for constructing different types of agency in psychotherapy interaction. The study investigates therapists' responses to turns where the client complains about a third party. It focuses on the way therapists' responses distribute experience (...) and agency between the therapist and the client by comparing responses formulated with the zero-person to responses formulated with a second person singular pronoun that refers to the client. The study thus approaches agency as situated, dynamic and interactional: an agent is a social unit whose elements are distributed in the therapist-client interaction. The data consist of 70 audio-recorded sessions of cognitive psychotherapy and psychoanalysis, and the method of analysis is conversation analysis and interactional linguistics. The main findings are that therapists use the zero-person for two types of responses: affiliating and empathetic responses that distribute the emotional experience between the client and the therapist, and responses that invite clients to interpret their own experiences, thereby distributing control and responsibility to the clients. In contrast, the second person references are used for re-constructing the client's past history. The conclusion is that therapists use the zero-person for both immediate emotional work and interpretative co-work on the client's experiences. The study suggests that therapists' use of the zero-person does not necessarily attribute “weak agency” to the client but instead might strengthen the clients' agency in the sense of control and responsibility in the long term. (shrink)

BackgroundThe amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and (...) biobanks.MethodsChairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank.ResultsThere was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied.ConclusionParticipants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding biobanks. As registries and biobanks expand, there is a need for critical analysis of suitable roles for REBs and subsequent guidance on these topics. The authors conclude by recommending REB participation in the creation of registries and biobanks and the eventual drafting of comprehensive legislation. (shrink)

The distinction between distributive and non-distributive profiles figures prominently in current evaluations of the ethical and epistemological risks that are associated with automated profiling practices. The diagnosis that non-distributive profiles may coincidentally situate an individual in the wrong category is often perceived as the central shortcoming of such profiles. According to this diagnosis, most risks can be retraced to the use of non-universal generalisations and various other statistical associations. This article develops a top-down analysis of non-distributive profiles in which this (...) fallibility of non-distributive profiles is no longer central. Instead, it focuses on how profiling creates various asymmetries between an individual data-subject and a profiler. The emergence of informational, interest, and perspectival asymmetries between data-subject and profiler explains how non-distributive profiles weaken the epistemic position of a profiled individual. This alternative analysis provides a more balanced assessment of the epistemic risks associated with non-distributive profiles. (shrink)