This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous (...) medical data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

We are developing the Neurological Disease Ontology (ND) to provide a framework to enable representation of aspects of neurological diseases that are relevant to their treatment and study. ND is a representational tool that addresses the need for unambiguous annotation, storage, and retrieval of data associated with the treatment and study of neurological diseases. ND is being developed in compliance with the Open Biomedical Ontology Foundry principles and builds upon the paradigm established by the Ontology for General Medical Science (...) (OGMS) for the representation of entities in the domain of disease and medical practice. Initial applications of ND will include the annotation and analysis of large data sets and patient records for Alzheimer’s disease, multiple sclerosis, and stroke. (shrink)

Rapid urbanization in Vietnam significantly impacts the environment and human well-being. Public parks are crucial for enhancing social and environmental sustainability in urban areas, yet their establishment and expansion require substantial funding. This study investigates the factors influencing Vietnamese urban residents’ willingness to donate to planting projects in public parks, utilizing the Bayesian Mindsponge Framework (BMF), which combines Mindsponge Theory’s informational entropy-based notion of value with Bayesian analysis. Analyzing data from 535 residents in major Vietnamese cities, we found that (...) while men visit public parks more frequently, they are less willing to donate to planting projects. Older residents visit parks more often and are more willing to donate, while higher-income individuals show greater willingness to donate. Most motivations—such as relaxation, physical activities, nature enjoyment, socializing, and family time—are positively linked to park visit frequency and indirectly to donation willingness. However, only relaxation and enjoyment of nature are directly associated with willingness to donate. Interestingly, higher education levels and visiting parks for children’s educational activities are associated with lower donation willingness. These findings hint at the possible existence of the free-riding problem, gender inequality, ineffective environmental education, and lack of awareness of public parks’ natural value, as well as opportunities to cultivate an eco-surplus culture through nature interactions in public parks. (shrink)

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. -/- Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and (...) class='Hi'>data collection were performed by two or more independent reviewers for each record. -/- Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. -/- Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation. (shrink)

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. (...) These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard. (shrink)

Objectives To increase postmortem organ donation rates, several countries are adopting an opt-out (presumed consent) policy, meaning that individuals are deemed donors unless they expressly refused so. Although opt-out countries tend to have higher donation rates, there is no conclusive evidence that this is caused by the policy itself. The main objective of this study is to better assess the direct impact of consent policy defaults per se on deceased organ recovery rates when considering the role of the (...) family in the decision-making process. This study does not take into account any indirect effects of defaults, such as potential psychological and behavioural effects on individuals and their relatives. -/- Design Based on previous work regarding consent policies, we created a conceptual model of the decision-making process for deceased organ recovery that included any scenario that could be directly influenced by opt-in or opt-out policies. We then applied this model to internationally published data of the consent process to determine how frequently policy defaults could apply. -/- Main outcome measures We measure the direct impact that opt-in and opt-out policies have per se on deceased organ recovery. -/- Results Our analysis shows that opt-in and opt-out have strictly identical outcomes in eight out of nine situations. They only differ when neither the deceased nor the family have expressed a preference and defaults therefore apply. The direct impact of consent policy defaults is typically circumscribed to a range of 0%–5% of all opportunities for organ recovery. Our study also shows that the intervention of the family improves organ retrieval under opt-in but hinders it under opt-out. -/- Conclusions This study may warn policy makers that, by emphasising the need to introduce presumed consent to increase organ recovery rates, they might be overestimating the influence of the default and underestimating the power granted to families. (shrink)

I aim to understand how the act of becoming an organ donor impacts whether it is permissible for a family veto to override an individual’s wish to donate. I argue that a Consent Model does not capture the right understanding of donor autonomy. I then assess a Gift Model and a Promise Model, arguing that both fail to capture important data about the ability to revoke one’s donor status. I then propose a Promise Acceptance Model, which construes becoming an (...) organ donor as accepting a promise the state makes to you to use your organs. This model, which implies that family vetoes are impermissible, captures the data other models struggle to accommodate. (shrink)

Background: Several countries have recently changed their model of consent for organ donation from opt-in to opt-out. We undertook a systematic review to determine public knowledge and attitudes towards these models in Europe. Methods: Six databases were explored between 1 January 2008 and 15 December 2017. We selected empirical studies addressing either knowledge or attitudes towards the systems of consent for deceased organ donation by lay people in Europe, including students. Study selection, data extraction, and quality assessment (...) were conducted by two or more reviewers independently. Findings: Awareness of the consent model was lower in opt-out countries than in opt-in countries. A majority of the public agrees with opt-in, regardless of the law in their own country. There are ambivalent attitudes regarding the opt-out system. The public tend to prefer opt-in and mandatory choice over opt-out when several options are offered. Interpretation: The assumption that people in opt-out countries are aware of the legal requirements to be excluded from the pool of potential donors is not supported by the results of this review. This is a concern, since ignorance hinders people's autonomy regarding organ donation decision-making. Higher awareness of consent model in opt-in countries may reflect greater efforts to inform the public through campaigns to motivate donation. Legal moves towards opt-out are at odds with people's expressed preferences. Main limitations of this review are the lack of data from some countries, study population heterogeneity, and methodological shortcomings. (shrink)

Background Consent policies for post-mortem organ procurement (OP) vary throughout Europe, and yet no studies have empirically evaluated the ethical implications of contrasting consent models. To fill this gap, we introduce a novel indicator of governance quality based on the ideal of informed support, and examine national differences on this measure through a quantitative survey of OP policy informedness and preferences in seven European countries. -/- Methods Between 2017–2019, we conducted a convenience sample survey of students (n = 2006) in (...) Austria (AT), Belgium (BE), Denmark (DK), Germany (DE), Greece (GR), Slovenia (SI) and Spain (ES), asking participants about their donation preferences, as well as their beliefs and views about the policy in place. From these measures, we computed indices of informedness, policy support, and fulfilment of unexpressed preferences, which we compared across countries and consent systems. -/- Results Our study introduces a tool for analyzing policy governance in the context of OP. Wide variation in policy awareness was observed: Most respondents in DK, DE, AT and BE correctly identified the policy in place, while those in SI, GR and ES did not. Respondents in opt-out countries (AT, BE, ES and GR) tended to support the policy in place (with one exception, i.e., SI), whereas those in opt-in countries (DE and DK) overwhelmingly opposed it. These results reveal stark differences in governance quality across countries and consent policies: We found a preponderance of informed opposition in opt-in countries and a general tendency towards support–either informed or uninformed–in opt-out countries. We also found informed divergence in opt-in countries and a tendency for convergence–either informed or uninformed–among opt-out countries. -/- Conclusion Our study offers a novel tool for analyzing governance quality and illustrates, in the context of OP, how the strengths and weaknesses of different policy implementations can be estimated and compared using quantitative survey data. (shrink)

In December 2015, Wales became the first country in the UK to move away from an opt-in system in organ procurement. The new legislation introduces the concept of deemed consent whereby a person who neither opt in nor opt out is deemed to have consented to donation. The data released by the National Health Service in July 2017 provide an excellent opportunity to assess this legislation in light of concerns that it would decrease procurement rates for living and (...) deceased donation, as well as sparking an increase in family refusals. None of these concerns have come to pass, with Wales experiencing more registered donors, fewer family refusals and more living donations. However, as the number of actual donors has dropped slightly from a high level, the situation must be monitored closely in the years to come. (shrink)

Biobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks could potentially (...) face. Methodologically set as a typology, the conceptual approach used in this paper is based on the interdisciplinary analysis of scientific literature, the relevant ethical and legal instruments and practices in biobanking to identify how risks are assessed, considered and mitigated. Through an interdisciplinary mapping exercise, we have produced a typology of potential risks in biobanking, taking into consideration the perspectives of different stakeholders, such as institutional actors and publics, including participants and representative organizations. With this approach, we have identified the following risk types: economic, infrastructural, institutional, research community risks and participant’s risks. The paper concludes by highlighting the necessity of an adaptive risk governance as an integral part of good governance in biobanking. In this regard, it contributes to sustainability in biobanking by assisting in the design of relevant risk management practices, where they are not already in place or require an update. The typology is intended to be useful from the early stages of establishing such a complex and multileveled biomedical infrastructure as well as to provide a catalogue of risks for improving the risk management practices already in place. (shrink)

As the debate over an English opt-out policy for organ procurement intensifies, assessing existing experiences becomes even more important. The Welsh introduction of opt-out legislation provides one important point of reference. With the introduction of deemed consent in December 2015, Wales became the first part of the UK to introduce an opt-out system in organ procurement. My article ‘Deemed consent: assessing the new opt-out approach to organ procurement in Wales’ conducted an early assessment of this.1 Taking its starting point in (...) important concerns often raised in discussion over opt-out legislation, it identified four key parameters to assess the effects. These are living donor rates, deceased donor rates, donor registrations and family refusals. My article compares these indicators before and after the enactment of the Welsh legislation employing a different-in-different design. In his reply to my article ‘Deemed consent: assessing the new opt-out approach to organ procurement in Wales’, Jordan Alexander Parsons offers two interesting critiques. The first pertains to the choice of indicators. Parsons prefer a narrower focus on the effect on deceased donor rates. The second pertains to the choice of data, Parsons preferring a time series of Wales to my different-in-different design. Parsons refers mainly to the official Welsh evaluation,2 a report I also cited in supplement to the NHS Activity Report data I employed. …. (shrink)

Abstract Background The first live birth following the use of a new reproductive technique, maternal spindle transfer (MST), which is a mitochondrial replacement technique (MRT), was accomplished by dividing the execution of the MST procedure between two countries, the USA and Mexico. This was done in order to avoid US legal restrictions on this technique. -/- Sources of data Academic articles, news articles, documents obtained through freedom of information requests, laws, regulations and national reports. -/- Areas of agreement MRTs (...) are new reproductive techniques that present novel ethical and legal challenges, since genetic material from three people is employed to create a child. -/- Areas of controversy Could the first MST procedure that culminated in a live birth negatively impact reproductive medicine in Mexico? -/- Growing points The USA and Mexico need specific and clear legislation on MRTs, in order for such techniques not to be governed by prior existing legislation on assisted reproduction that is inadequate for dealing with the new challenges that these techniques present. -/- Areas timely for developing research There is a pressing need for work to be done on the international governance of new reproductive techniques. (shrink)

Fixing the problem won’t be easy, but humans’ sharpened focus on an emerging philosophy of data might give us some clue about where we will be heading for.

There has been a troublesome anomaly in the UK between cash payment to men for sperm donation and the effective assumption that women will pay to donate eggs. Some commentators, including Donald Evans in this journal, have argued that the anomaly should be resolved by treating women on the same terms as men. But this argument ignores important difficulties about property in the body, particularly in relation to gametes. There are good reasons for thinking that the contract model and (...) payment for gametes are both inappropriate, and that a model based on altruism should be applied to both sexes. (shrink)

Surveillance studies scholars and privacy scholars have each developed sophisticated, important critiques of the existing data-driven order. But too few scholars in either tradition have put forward alternative substantive conceptions of a good digital society. This, I argue, is a crucial omission. Unless we construct new “sociotechnical imaginaries,” new understandings of the goals and aspirations digital technologies should aim to achieve, the most surveillance studies and privacy scholars can hope to accomplish is a less unjust version of the technology (...) industry’s own vision for the future. (shrink)

Ontological realism aims at the development of high quality ontologies that faithfully represent what is general in reality and to use these ontologies to render heterogeneous data collections comparable. To achieve this second goal for clinical research datasets presupposes not merely (1) that the requisite ontologies already exist, but also (2) that the datasets in question are faithful to reality in the dual sense that (a) they denote only particulars and relationships between particulars that do in fact exist and (...) (b) they do this in terms of the types and type-level relationships described in these ontologies. While much attention has been devoted to (1), work on (2), which is the topic of this paper, is comparatively rare. Using Referent Tracking as basis, we describe a technical data wrangling strategy which consists in creating for each dataset a template that, when applied to each particular record in the dataset, leads to the generation of a collection of Referent Tracking Tuples (RTT) built out of unique identifiers for the entities described by means of the data items in the record. The proposed strategy is based on (i) the distinction between data and what data are about, and (ii) the explicit descriptions of portions of reality which RTTs provide and which range not only over the particulars described by data items in a dataset, but also over these data items themselves. This last feature allows us to describe particulars that are only implicitly referred to by the dataset; to provide information about correspondences between data items in a dataset; and to assert which data items are unjustifiably or redundantly present in or absent from the dataset. The approach has been tested on a dataset collected from patients seeking treatment for orofacial pain at two German universities and made available for the NIDCR-funded OPMQoL project. (shrink)

This research presents a novel and efficient public key cryptosystem known as the Enhanced Schmidt Samoa (ESS) cryptosystem, proposed to safeguard the data of a single owner in cloud computing environments. Data storage is a one-time process in the cloud, while data retrieval is a frequent operation. Experimental results demonstrate that the ESS cryptosystem offers robust data confidentiality in the cloud, surpassing the security provided by traditional cryptosystems. The research also introduces a secure cloud framework designed (...) to accommodate both individuals and organizations accessing applications and data in the cloud. While individual users may generate and share data, organizations often involve multiple users in data sharing to support their business processes. In these scenarios, multi-user data ownership and access management become critical, requiring secure sharing of cryptographic keys among the authorized users. To address these issues and ensure data confidentiality in multi-user cloud environments, the Improved Secure Cloud Data Storage Framework (ISCDSF) is introduced. This research not only enhances data security but also provides a comprehensive framework for secure data sharing in the cloud, catering to the needs of both individual users and organizations. (shrink)

We argued in a recent issue of this journal that if abortion is restricted,1 then there are parallel obligations for parents to donate body parts to their children. The strength of this obligation to donate is proportional to the strength of the abortion restrictions. If abortion is never permissible, then a parent must always donate any organ if they are a match. If abortion is sometimes permissible and sometimes not, then organ donation is sometimes obligatory and sometimes not. Our (...) argument was based on the following ideas: (a) that a fetus has full moral status, (b) that parents have special obligations to their offspring, fetus or not, and (c) that this special obligation is to protect them. The result is the conclusion that abortion restrictivists cannot also consistently deny that organ donation should be compulsory. (shrink)

Data security is, protecting data from ill- conceived get to, utilize, introduction, intrusion, change, examination, recording or destruction. Cloud computing is a sort of Internet-based computing that grants conjoint PC handling resources and information to PCs what's more, different gadgets according to necessity. It is a model that empowers universal, on-request access to a mutual pool of configurable computing resources. At present, security has been viewed as one of the best issues in the improvement of Cloud Computing. The (...) key issue in effective execution of Cloud Computing is to adequately deal with the security in the cloud applications. This paper talks about the part of cryptography in cloud computing to improve the data security. The expectation here is to get bits of knowledge another security approach with the usage of cryptography to secure information at cloud data centers. (shrink)

Nowadays, protecting trust in social sciences also means engaging in open community dialogue, which helps to safeguard robustness and improve efficiency of research methods. The combination of open data, open review and open dialogue may sound simple but implementation in the real world will not be straightforward. However, in view of Begley and Ellis’s (2012) statement that, “the scientific process demands the highest standards of quality, ethics and rigour,” they are worth implementing. More importantly, they are feasible to work (...) on and likely will help to restore plausibility to social sciences research. Therefore, I feel it likely that the triplet of open data, open review and open dialogue will gradually emerge to become policy requirements regardless of the research funding source. (shrink)

Recently, it has been argued that the use of Big Data transforms the sciences, making data-driven research possible and studying causality redundant. In this paper, I focus on the claim on causal knowledge by examining the Big Data project EXPOsOMICS, whose research is funded by the European Commission and considered capable of improving our understanding of the relation between exposure and disease. While EXPOsOMICS may seem the perfect exemplification of the data-driven view, I show how causal (...) knowledge is necessary for the project, both as a source for handling complexity and as an output for meeting the project’s goals. Consequently, I argue that data-driven claims about causality are fundamentally flawed and causal knowledge should be considered a necessary aspect of Big Data science. In addition, I present the consequences of this result on other data-driven claims, concerning the role of theoretical considerations. I argue that the importance of causal knowledge and other kinds of theoretical engagement in EXPOsOMICS undermine theory-free accounts and suggest alternative ways of framing science based on Big Data. (shrink)

In this essay, we advocate that the issue of health data ethics should no longer be considered on the level of individual scientists or research labs, but rather as a problem involving all stakeholders, from publishers, funders, ethical committees to governments, for the sake of research integrity.

The research introduces a novel framework that incorporates real-time monitoring, dynamic resource allocation, and adaptive threshold settings to ensure consistent SLA adherence while optimizing computing performance. Extensive simulations are conducted using synthetic and real-world datasets to evaluate the performance of the proposed algorithm. The results demonstrate that the optimized load balancing approach outperforms traditional algorithms in terms of SLA compliance, resource utilization, and energy efficiency. The findings suggest that the integration of optimization techniques into load balancing algorithms can significantly enhance (...) the operational efficiency of data centers, paving the way for future advancements in autonomous and self-optimizing data centers. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other well-understood (...) class='Hi'>data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

Between 2006 and 2011, humanity accumulated 1,600 EB of data. As a result of this growth, there is now more data produced than available storage. This article explores the problem of “Big Data,” arguing for an epistemological approach as a possible solution to this ever-increasing challenge.

Big Data has the potential to enable unprecedentedly rigorous quantitative modeling of complex human social relationships and social structures. When such models are extended to nonhuman domains, they can undermine anthropocentric assumptions about the extent to which these relationships and structures are specifically human. Discoveries of relevant commonalities with nonhumans may not make us less human, but they promise to challenge fundamental views of what it is to be human.

Scalability, efficiency, and security had been a persistent problem over the years in data mining, several techniques had been proposed and implemented but none had been able to solve the problem of scalability, efficiency and security from cloud computing. In this research, we solve the problem scalability, efficiency and security in data mining over cloud computing by using a restful web services and combination of different technologies and tools, our model was trained by using different machine learning algorithm, (...) and finally using different validation and cross-validation methods to compare and validate our results. We build, train, test and deploy our model by restful API services which can be called through an endpoint, and with very high accuracy and huge success. (shrink)

In this chapter, we provide an overview of the ethical considerations relevant to the use of nudges in organ donation policy. We do not defend a position on the permissibility of nudging in this context, but instead aim to clearly outline the strongest arguments on the different sides of this issue that have been presented in the English-language scholarly bioethics literature. We also highlight the questions that are in need of further investigation. In part 1, we briefly discuss nudging (...) before considering proposals to use nudges to increase the number of registered organ donors, including opt-out donor registration systems and the use of “nudge statements.” In part 2, we discuss the use of nudges to influence the decision-making of family members in circumstances where they have a veto over the donation of their loved one’s organs. (shrink)

Le big data peut générer, par inférences, de nouvelles connaissances et perspectives. Le paradigme qui résulte de l'utilisation du big data crée de nouvelles opportunités. L'une des principales préoccupations dans le cas du big data est que les scientifiques des données ont tendance à travailler avec des données sur des sujets qu'ils ne connaissent pas et n'ont jamais été en contact, étant éloignés du produit final de leur activité (l'application des analyses). Une étude récente (Tanner 2014) indique (...) que cela peut être la raison d'un phénomène connu sous le nom d'aliénation numérique. DOI: 10.13140/RG.2.2.34700.54409. (shrink)

The Significant Interest view entails that even if there were no medical reasons to have access to genetic knowledge, there would still be reason for prospective parents to use an identity-release donor as opposed to an anonymous donor. This view does not depend on either the idea that genetic knowledge is profoundly prudentially important or that donor-conceived people have a right to genetic knowledge. Rather, it turns on general claims about parents’ obligations to help promote their children’s well-being and the (...) connection between a person’s well-being and the satisfaction of what I call their “worthwhile significant subjective interests.” To put this view simply, the fact that a donor-conceived person—who knows she is donor-conceived—is likely to be very interested in acquiring genetic knowledge gives prospective parents a weighty reason to use an identity-release donor. This is because parents should promote their children’s well-being through the satisfaction of their children’s worthwhile significant interests. (shrink)

This theme issue has the founding ambition of landscaping Data Ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing, and use), algorithms (including AI, artificial agents, machine learning, and robots), and corresponding practices (including responsible innovation, programming, hacking, and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data Ethics builds on the foundation provided by (...) Computer and Information Ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the Level of Abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even the data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations — the interactions among hardware, software, and data — rather than on the variety of digital technologies that enables them. And it emphasises the complexity of the ethical challenges posed by Data Science. Because of such complexity, Data Ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of Data Science and its applications within a consistent, holistic, and inclusive framework. Only as a macroethics Data Ethics will provide the solutions that can maximise the value of Data Science for our societies, for all of us, and for our environments. (shrink)

Contemporary republicans have adopted a less-than-charitable attitude toward private beneficence, especially when it is directed to the poor, worrying that rich patrons may be in a position to exercise arbitrary power over their impoverished clients. These concerns have led them to support impartial public provision by way of state welfare programs, including an unconditional basic income (UBI). In contrast to this administrative model of public welfare, I will propose a competitive model in which the state regulates and subsidizes a decentralized (...) and nonstatist provision of support for the poor. This model will fix the historically objectionable features of private provision by having the state prevent collusion among private charities, deliver information to recipients about alternative sources of assistance, and give substantial grants to charities as well as tax incentives and vouchers to donors. I will contend that such an approach would do a better job of minimizing domination of the poor than traditional welfare states and may prove more politically feasible than a UBI, at least in the near term in certain national contexts. (shrink)

This article explores how readers recognize their personal identities represented through data visualizations. The recognition is investigated starting from three definitions captured by the philosopher Paul Ricoeur: the identification with the visualization, the recognition of someone in the visualization, and the mutual recognition that happens between readers. Whereas these notions were initially applied to study the role of the book reader, two further concepts complete the shift to data visualization: the digital identity stays for the present-day passport of (...) human actions and the promise is the intimate reflection that projects readers towards their own future. This article reflects on the delicate meaning of digital identity and the way of representing it according to this structure: From Personal Identity to Media is a historical introduction to self-recognition, Data Visualization for Representing Identities moves the focus to visual representation, and The Course of Recognition breaks the self-recognition in through the five concepts above just before the Conclusion. (shrink)

Healthcare professionals decide wisely about personalized medicine, treatment plans, and resource allocation by utilizing big data analytics and machine learning. To guarantee that algorithmic recommendations are impartial and fair, however, ethical issues relating to prejudice and data privacy must be taken into account. Big data analytics and machine learning have a great potential to disrupt healthcare, and as these technologies continue to evolve, new opportunities to reform healthcare and enhance patient outcomes may arise. In order to investigate (...) the patient’s outcomes with empirical evidence, this research was conducted using an online survey to incorporate healthcare professionals, patient’s reviews, and clinical staff. The data were analyzed using SmartPLS 4.0 to predict the structural model. The findings revealed a direct impact as positive influence of using machine learning on healthcare performance and patient outcomes through big data analytics. Moreover, it is evident that this can lead to personalized treatment plans, early interventions, and improved patient outcomes. Additionally, big data analytics can help healthcare providers optimize resource allocation, improve operational efficiency, and reduce costs. The impact of big data analytics on patient outcome and healthcare performance is expected to continue to grow, making it an important area for investment and research. (shrink)

This post is to inform you about the publishing of an online-first version of our article titled “Critical remarks on current practices of data article publishing: issues, challenges, and recommendations”. The manuscript has gone through approximately 18 months of preparation and peer review to appear in the journal Data Science and Informetrics (DSI), finally.

We present evidence from a pre-registered experiment indicating that a philosophical argument––a type of rational appeal––can persuade people to make charitable donations. The rational appeal we used follows Singer’s well-known “shallow pond” argument (1972), while incorporating an evolutionary debunking argument (Paxton, Ungar, & Greene 2012) against favoring nearby victims over distant ones. The effectiveness of this rational appeal did not differ significantly from that of a well-tested emotional appeal involving an image of a single child in need (Small, Loewenstein, and (...) Slovic 2007). This is a surprising result, given evidence that emotions are the primary drivers of moral action, a view that has been very influential in the work of development organizations. We did not find support for our pre-registered hypothesis that combining our rational and emotional appeals would have a significantly stronger effect than either appeal in isolation. However, our finding that both kinds of appeal can increase charitable donations is cause for optimism, especially concerning the potential efficacy of well-designed rational appeals. We consider the significance of these findings for moral psychology, ethics, and the work of organizations aiming to alleviate severe poverty. (shrink)

Data mining possess a significant threat to ethics, privacy, and legality, especially when we consider the fact that data mining makes it difficult for an individual or consumer (in the case of a company) to control accessibility and usage of his data. Individuals should be able to control how his/ her data in the data warehouse is being access and utilize while at the same time providing enabling environment which enforces legality, privacy and ethicality on (...) data scientists, or data engineer during data mining process. This paper review issues of legality, privacy, and ethicality in data mining, review processes of Data mining, and also proposes solution to current ethical and privacy issue in data mining. It introduces a new method which enforces data mining without infringing on the privacy of individual or consumer whose data are being used. The sole aim of this paper is to propose a new method of mining data which restricts scientists within the constraints of legality, privacy, and ethicality. (shrink)

As a policy instrument that is deeply rooted in technology assessment, the precautionary principle examines the effects of a given object on humans and the environment. In practice the principle is rarely used to analyze the effects of our safety measures on the object itself or the way it is produced. Yet it is exactly in the effect on the blood procurement system that blood safety regulations based on the precautionary principle have to be particularly careful, as the vast majority (...) of blood products in the Global North are obtained through donations. (shrink)

The theory of knowledge in early twentieth-century Anglo American philosophy was oriented toward phenomenally described cognition. There was a healthy respect for the mind-body problem, which meant that phenomena in both the mental and physical domains were taken seriously. Bertrand Russell's developing position on sense-data and momentary particulars drew upon, and ultimately became like, the neutral monism of Ernst Mach and William James. Due to a more recent behaviorist and physicalist inspired "fear of the mental", this development has been (...) down-played in historical work on early analytic philosophy. Such neglect assumes that the "linguistic turn" is a proper and permanent effect of twentieth-century philosophy, an assumption that distorts early analytic historiography, and begs a substantive philosophical question about thought and cognition. (shrink)

An effective method to increase the number of potential cadaveric organ donors is to make people donors by default with the option to opt out. This non-coercive public policy tool to influence people’s choices is often justified on the basis of the as-judged-by-themselves principle: people are nudged into choosing what they themselves truly want. We review three often hypothesized reasons for why defaults work and argue that the as-judged-by-themselves principle may hold only in two of these cases. We specify further (...) conditions for when the principle can hold in these cases and show that whether those conditions are met is often unclear. We recommend ways to expand nationwide surveys to identify the actual reasons for why defaults work and discuss mandated choice policy as a viable solution to many arising conundrums. (shrink)

We critically engage two traditional views of scientific data and outline a novel philosophical view that we call the pragmatic-representational view of data. On the PR view, data are representations that are the product of a process of inquiry, and they should be evaluated in terms of their adequacy or fitness for particular purposes. Some important implications of the PR view for data assessment, related to misrepresentation, context-sensitivity, and complementary use, are highlighted. The PR view provides (...) insight into the common but little-discussed practices of iteratively reusing and repurposing data, which result in many datasets’ having a phylogeny—an origin and complex evolutionary history—that is relevant to their evaluation and future use. We relate these insights to the open-data and data-rescue movements, and highlight several future avenues of research that build on the PR view of data. (shrink)

Since the release of OpenAI's ChatGPT, the world has entered a race to develop more capable and powerful AI, including artificial general intelligence (AGI). The development is constrained by the dependency of AI on the model, quality, and quantity of training data, making the AI training process highly costly in terms of resources and environmental consequences. Thus, improving the effectiveness and efficiency of the AI training process is essential, especially when the Earth is approaching the climate tipping points and (...) planetary boundaries. It is evident that AI can function better when trained to mimic certain human mental processes. Based on insights from quantum mechanics and the informational entropy-based notion of value, we suggest AI developers can enhance the AI training processes' effectiveness and efficiency by creating and implementing parameter systems that are capable of effectively assigning probabilities to informational quanta. Such systems can help reduce entropy within the system, which lowers the energy required for data storage and processing while decreasing the likelihood of information loss during training. Successfully applying the concept of information entropy-based value in AI development will be crucial for advancing generative AI and achieving AGI in a sustainable manner. (shrink)

Data subject rights provide data controllers with obligations that can help with transparency, giving data subjects some control over their personal data. To date, a growing number of researchers have used these data subject rights as a methodology for data collection in research studies. No one, however, has gathered and analysed different academic research studies that use data subject rights as a methodology for data collection. To this end, we conducted a systematic (...) literature review that searched, compiled, and analysed 32 academic studies that use data subject rights as a data collection method. We find that the right of access is the most commonly-used data subject right by researchers, most studies are interested in measuring data subject rights compliance, and that a variety of difficulties exist in conducting research studies with data subject rights. We conclude that researchers should explore other data subject rights for alternative purposes, ease the process of exercising data subject rights, and improve the scalability of these studies. (shrink)

KEY POINTS In Canada, commercial data brokers collect deidentified patient data from pharmacies, private drug insurers, the federal government and medical clinics without patient consent. Although pharmaceutical companies are the data brokers’ primary customers, academics and nonprofit and public entities also use commercial data sets, given the absence of a coordinated public approach to collecting these data across Canada. Risks of commercialized patient data include loss of anonymity, surveillance and marketing, discrimination and violation of (...) Indigenous data sovereignty. Coordinated infrastructure for the collection and coordination of health data across Canada and updated privacy legislation would protect individuals and communities and enable appropriate data uses. (shrink)

Bioethical discourse on organ donation covers a wide range of topics, from informed consent procedures and scarcity issues up to ‘transplant tourism’ and ‘organ trade’. This paper presents a ‘depth ethics’ approach, notably focussing on the tensions, conflicts and ambiguities concerning the status of the human body. These will be addressed from a psychoanalytical angle. First, I will outline Lacan’s view on embodiment as such. Subsequently, I will argue that, for organ recipients, the donor organ becomes what Lacan refers (...) to as an object a, the ‘partial object’ of desire, the elusive thing we are deprived of, apparently beyond our grasp. Within the recipient’s body an empty space emerges, a kind of ‘vacuole’, once occupied by a faltering organ. This space can only be filled by a ‘gift’ from the other, by an object a. Once implanted, however, this implant becomes an ‘extimate’ object: something both ‘external’ and ‘intimate’, both ‘embedded’ and ‘foreign’, and which is bound to remain an object of concern for quite some time, if not for life. A Lacanian analysis allows us, first of all, to address the question what organ transplantation has in common with other bodily practices involving bodily parts procured from others, such as cannibalism. But it also reveals the basic difference between the two, as well as the distance between the ‘fragmented body’ of Frankenstein’s ‘monster’—as an aggregate of replaceable parts—and the multiple organ recipients of today. (shrink)

While the term “reactivity” has come to be associated with specific phenomena in the social sciences, having to do with subjects’ awareness of being studied, this paper takes a broader stance on this concept. I argue that reactivity is a ubiquitous feature of the psychological subject matter and that this fact is a precondition of experimental research, while also posing potential problems for the experimenter. The latter are connected to the worry about distorted data and experimental artifacts. But what (...) are experimental artifacts and what is the most productive way of dealing with them? In this paper, I approach these questions by exploring the ways in which experimenters in psychology simultaneously exploit and suppress the reactivity of their subject matter in order to produce experimental data that speak to the question or subject matter at hand. Highlighting the artificiality of experimental data, I raise the question of what distinguishes a genuine experimental result from an experimental artifact. My analysis construes experimental results as the outcomes of inferences from the data that take material background assumptions as auxiliary premises. Artifacts occur when one or more of these background assumptions are false, such that the data do not reliably serve the purposes they were generated for. I conclude by laying out the ways in which my analysis of data quality is relevant to, and informed by, recent debates about the replicability of experimental results. (shrink)