Democratic governments might be required by law to disseminate information to the people. This is called governmental transparency. What is the burden of transparency? We propose a “pragmatic information theory of communication” that places information accessibility as a foundation of transparency. Using a game model—the Transparency Game—we show that the pragmatic theory is the only one that makes it difficult for governments to appear transparent while not actually being transparent. There are two important consequences of understanding transparency (...) through the theory: Accessible information must be actionable, and cognitive science plays a vital role in assessing the accessibility of information. These consequences can have implications for public policies that promote transparency. (shrink)

This paper connects to Jon Bing’s great vision of an integrated national legal information system. The intention of this paper is to variegate Bing’s vision of an integrated information system by shifting the focus to the lay users, thus to those, who are subject to the law. The modified vision is an integrated information system that supports intelligible access to law for the citizens. This presupposes however an unambiguous and transparent legal system. Accordingly, it is also (...) stressed that intelligent legal knowledge engineering has high potential to increase precision and rationality in law, and hence safeguard the predictability of law and legal certainty. The central hypothesis is that putting the person who is subject to the law at the centre provides more rational reason to aim for the greatest possible precision of law by exploiting the means and technologies of our time than to uphold strategic vagueness. On this basis, the paper proposes the development of a basic set of controllable and justiciable basic legal drafting standards on EU and on national level, and promotes a transparency by design approach for legal knowledge engineering in order to enhance precision, integrity, comprehensibility and accessibility of law. Similarly to Jon Bing’s vision, this modified vision of an integrated legal information systems is, most probably, also likely to remain unfulfilled. However, what would science be without visions and (science) fictions? (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

Au Québec, la Loi sur l’accès aux documents des organismes publics et sur la protection des renseignements personnels offre une exception en matière de transparence à la plupart des institutions publiques où la recherche en santé publique est menée en leur permettant de ne pas divulguer leurs utilisations de données à caractère personnel (souvent collectées sans le consentement des personnes étudiées). Cette exception est éthiquement problématique en raison de préoccupations importantes (ex. : la protection de la vie privée et les (...) inconvénients potentiels des utilisations secondaires de données) et nous soutenons que tous ceux qui mènent des recherches doivent être transparents et responsables du travail qu’ils accomplissent dans l’intérêt public. (shrink)

The way in which humans deal with physical objects has been formed by extensive interaction and, according to the theory of embodied cognition, has led to conceptualization and interpretation that is grounded in physical interaction of the body with elements in the environment. Digital objects are immaterial and cannot show similar external properties as physical objects, and further, they are representational in nature. Specific problems related to their immaterial nature are those of permanence, location, and ownership. In this paper the (...) differences between material and immaterial objects are analyzed with respect to human interaction. Three issues are highlighted: the lack of transparency of digital document handling, security of digital information and accessibility of digital information. It is concluded that the importance of the distinction between direct physical objects and immaterial objects has been vastly underestimated, at the cost of usability, trust and security. (shrink)

This paper argues that information should be made transparent as a means to close the global digital divide problem. The usual conception of the digital divide as a bifurcation between the information rich and poor in fact does a poor job at describing the reality of the situation, which is characterized by multiple dimensions of digital divides in many contexts. Taking the lead from Albert Borgmann, it is recognized that the so-called information poor do possess a rich (...) resource of information which needs to be fully accounted for in order to solve the global digital divide problem. In addition, making information transparent means, following the theory of development of Peruvian economist Hernando de Soto, that information should be made available and accessible through a system of representation. Floridis account of information ethics thus needs to be supplemented by the realization that members of infosphere, which in his view consist of information objects, should be made transparent in order that the global digital divide be ameliorated. In other words there should be a system of information about information, namely semantic representation of objective information which enables the locals to make full use of their available informational resources. (shrink)

As a new praxis emerges, in Access to Information in Africa for the first time African scholars and practitioners reflect on recent advances on the continent, as well as the obstacles that must still be overcome if greater public access to information is to make a distinctive contribution to Africa's democratic and socio-economic future.

Key issues in epistemology for the most part have to do with epistemic values such as justification, truth, and knowledge—that is, values related to the epistemic status of our propositional attitudes, mental events, and states. However, another important issue that is worth examining is the extent to which a subject is in a position to evaluate the strength of her epistemic position. In this paper, I wish to emphasize two properties of our mental states that play a decisive part in (...) that respect: their opacity and transparency. In the following, I will assume that a mental state is opaque whenever it presents itself with no underlying reason, whereas states that are supported by apparent reasons are transparent. One main argument that I will defend is that even when the opacity and transparency of our mental states are not reliable cues, still they remain highly informative. Notably, I draw some implications relative to the externalist/internalist debate in epistemology. I examine the claim that only mental states that are justified are well grounded or justification conferring and the idea that often stands behind, that is, that only states whose reasons are accessible are justified—namely, the Accessibility Requirement. I also examine the source of a recent debate in epistemology: the epistemic status of our intuitive states, as these are perfect instances of opaque mental states. I conclude that intuitive states in some respect are less misleading than states that are supported by apparent reasons. (shrink)

Transparency is the order of the day. It is a term, a slogan, that dominates public discourse about corruption and freedom of information. Considered crucial to democracy, it touches our political and economic lives as well as our private lives. Anyone can obtain information about anything. Everything—and everyone—has become transparent: unveiled or exposed by the apparatuses that exert a kind of collective control over the post-capitalist world. Yet, transparency has a dark side that, ironically, has everything to do (...) with a lack of mystery, shadow, and nuance. Behind the apparent accessibility of knowledge lies the disappearance of privacy, homogenization, and the collapse of trust. The anxiety to accumulate ever more information does not necessarily produce more knowledge or faith. Technology creates the illusion of total containment and the constant monitoring of information, but what we lack is adequate interpretation of the information. In this manifesto, Byung-Chul Han denounces transparency as a false ideal, the strongest and most pernicious of our contemporary mythologies. (shrink)

Transparency is a salutary value in our constitutional architecture. It has also been described as a necessary element in promoting accountability in the regulatory aspects of essential medicines. Despite its several incarnations, the Medicines and Related Substances Act (Medicines Act) retains a provision headed 'Preservation of secrecy' (section 34). This contributionseeks to evaluate section 34 in the context of transparency and ascertain whether it is in conflict with other legislation pertaining to the promotion of access to information and, (...) in particular, whether it is consistent with the Constitution of the Republic of South Africa. (shrink)

_Genetic Transparency?_ tackles the question of who has, or should have access to personal genomic information. Genomics experts and scholars from the humanities and social sciences discuss the changes in interpersonal relationships, human self-understandings, ethics, law, and the health systems.

Perhaps nothing has become more evident in the months and years since 9/11 than the tension that exists between the publics access to information and concerns about protecting national security. This tension raises fundamental questions regarding how and to what extent national security secrecy is consistent with American notions of democracy; how institutions governing determinations about secrecy and disclosure should be designed; and the proper role of Congress, the courts, the public, and the media when it comes to (...) government assertions of secrecy. The materials in this book will provide the interested reader a window into the current shape of the eternal push-and-pull between secrecy and access to information in a democracy. (shrink)

Today, the demand for transparency is omnipresent. In particular, transparency is considered a prerequisite for good governance, for political participation and democracy. On closer inspection, however, transparency proves to be ambivalent. For complete transparency has not yet been achieved anywhere. Moreover, measures to increase transparency can have the opposite effect and stir up mis-trust. Historians are just beginning to discover this topic. The volume aims at elucidating the opportunities and the restrictions of transparency in historical research. It assembles contributions covering (...) European history since the 19th century. The contributors focus on political and cultural history, but include also economic and media history as well as the history of ideas. They analyse publicly debated demands and efforts for transparency, conceived as the access to information or its disclosure. (shrink)

Transparency has evolved from an individual, dangerous power in Plato to a desirable, collective property in the contemporary world. This paper intends to give a brief account of this long and somehow surprising path and extract some interesting consequences for economic and political activities, as well as for information technologies. Six literary masterpieces are used to highlight the contradictions and dangers entailed by the abuse of the fascinating metaphor of transparency. In the end, what is usually intended when demanding (...) transparency from a corporation, a firm or a state is more (or more accessible) information about it, i.e., understandable and abundant black and white data. This means reporting, picturing, producing material, becoming apparent, which is precisely the contrary of being transparent. We don’t want to look through , but to look directly at . The question, then, is not transparency, but opacity: what do we need and want to see, and how is this going to be produced? (shrink)

Political institutions can be transparent or secret. If they are transparent, then we have access to information about how agents act within them. If they are secret, then we do not have access to this information. The presence and extent of transparency has tremendous impact on how political institutions function. The purpose of this article is to offer a brief overview of what political philosophers have thus far had to say about transparency as it pertains to (...) political institutions. In doing so, I hope to connect philosophical questions about transparency to relevant social scientific work and to highlight areas where more work needs to be done. (shrink)

This paper highlights the complex and fractured nature of EU governance, before examining various ways of introducing more light into the various dark recesses of current governance structures. The debate on transparency at the EU level is viewed through the prism of deliberative democracy and enabling more effective citizen participation in the governing processes. This model of democracy considers political participation by citizens in a broad sense which is not limited to participation in strictly political institutions (voting). From this perspective (...) the ability of citizens to effectively participate in social dialogue, in the broad sense of the term, is a definite attribute of democracy. The ability to participate in social dialogue depends to a large extent on accessibility of information and accessibility of the dialogue itself. The role of advanced information technology is obvious. It not only facilitates access to relevant information crucial for will formation processes but also facilitates social dialogue among citizens. Some form of organized and networked ‘active’ citizenry is moreover required‐ aware, committed and potent. This paper will thus further argue that ‘civil society’ (defined as in any event embracing the not for profit, public interest sector) at the EU level has a special role to play in this regard and will explore in outline some possible means of institutionalising this role in the highly specific EU context. (shrink)

How can providing less textual information about a fictional character make his or her mind more transparent and accessible to the reader? This is the question that emerges from an empirical study of reader response conducted by Kotovych et al. Taking my cue from this study, I discuss the role of implied information in readers’ interactions with characters in prose fiction. This is the textual strategy I call ‘character-centered implicature.’ I argue that the inferential work cued by implicature (...) creates an intersubjective dynamic analogous to what philosophers Zahavi and Rochat discuss under the heading of ‘experiential sharing.’ Effectively, readers complement the textual evocation of mind by drawing on their own past experiences, which leads to a distinctive first-person plural perspective—a sharing of cognitive resources that is responsible for the perceived transparency of the character’s mind. While this experiential sharing may result in empathetic perspective-taking, not all instances of empathy for fictional characters involve sharing. (shrink)

BackgroundThe objective of this study was to evaluate the nature and extent of reproducible and transparent research practices in neurology publications.MethodsThe NLM catalog was used to identify MEDLINE-indexed neurology journals. A PubMed search of these journals was conducted to retrieve publications over a 5-year period from 2014 to 2018. A random sample of publications was extracted. Two authors conducted data extraction in a blinded, duplicate fashion using a pilot-tested Google form. This form prompted data extractors to determine whether publications provided (...) access to items such as study materials, raw data, analysis scripts, and protocols. In addition, we determined if the publication was included in a replication study or systematic review, was preregistered, had a conflict of interest declaration, specified funding sources, and was open access.ResultsOur search identified 223,932 publications meeting the inclusion criteria, from which 400 were randomly sampled. Only 389 articles were accessible, yielding 271 publications with empirical data for analysis. Our results indicate that 9.4% provided access to materials, 9.2% provided access to raw data, 0.7% provided access to the analysis scripts, 0.7% linked the protocol, and 3.7% were preregistered. A third of sampled publications lacked funding or conflict of interest statements. No publications from our sample were included in replication studies, but a fifth were cited in a systematic review or meta-analysis.ConclusionsCurrently, published neurology research does not consistently provide information needed for reproducibility. The implications of poor research reporting can both affect patient care and increase research waste. Collaborative intervention by authors, peer reviewers, journals, and funding sources is needed to mitigate this problem. (shrink)

Given the profound public health and economic ramifications of decisions made by the U.S. Food and Drug Administration, the degree to which FDA activities should reflect an approach founded on complete transparency versus one focused on preserving confidentiality of information deserves public discussion. On one hand, reasonable requirements for transparency are critical to stimulating effective innovation, knowledge dissemination, and good business practice. On the other, ensuring the vitality of the medical products industry requires protecting legitimately proprietary information. With (...) current standards reflecting a lengthy accumulation of legal, regulatory, and practical precedent, recent significant changes in the environment in which the FDA operates should prompt a critical examination of current practices. In this article, I comment on Sharfstein and colleagues’ “Blueprint for Transparency,” which calls for multiple specific actions to increase transparency at the agency across five key areas, including interactions between FDA and industry, public disclosure of internal FDA analyses, deliberations concerning generics and biosimilars, expanded access to raw study data, and approaches to countering misleading information in the public sphere. I evaluate these recommendations in light of my experience as a clinician, researcher, and former FDA Commissioner, and reflect on possible outcomes that could result from enacting these practices. (shrink)

BackgroundSharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee (DAC), rather than making data openly available without restrictions. A DAC, whether a formal or informal (...) group of individuals, has the responsibility of reviewing and assessing data access requests. Many individual groups, consortiums, institutional and independent DACs have been established but there is currently no widely accepted framework for their organization and function.Main textWe propose that DACs, should have the role of both promotion of data sharing and protection of data subjects, their communities, data producers, their institutions and the scientific enterprise. We suggest that data access should be granted by DACs as long as the data reuse has potential social value and provided there is low risk of foreseeable harms. To promote data sharing and to motivate data producers, DACs should encourage secondary uses that are consistent with the interests of data producers and their own institutions. Given the suggested roles of DACs, there should be transparent, simple and clear application procedures for data access. The approach to review of applications should be proportionate to the potential risks involved. DACs should be established within institutional and legal frameworks with clear lines of accountability, terms of reference and membership. We suggest that DACs should not be modelled after research ethics committees (RECs) because their functions and goals of review are different from those of RECs. DAC reviews should be guided by the principles of public health ethics instead of research ethics.ConclusionsIn this paper we have suggested a framework under which DACs should operate, how they should be organised, and how to constitute them. (shrink)

The Blueprint for Transparency at the FDA recommends that the FDA proactively release more clinical trial data. We show that the FDA possesses the legal authority to act on this recommendation, and describe several reasons that the agency should do so. In particular, the primary existing route for researchers to obtain access to this data, the Freedom of Information Act, has important limits, as our own recent experience shows.

1. The Search Engine operators inform the users about the way in which the Search Engine works; particularly the basic criteria of ranking are explained. Also, the Search Engine operators describe which ways of manipulating websites lead to exclusion from the result lists in case of doubt.2. The Search Engine operators design their sites in the most transparent way. Contents whose position on the result list is due to a commercial arrangement are clearly marked.3. It is the intention of the (...) Search Engine opera-tors to protect children and youths from morally damaging contents. To this purpose, the opera-tors provide family filters and point out to the fact that filters do not guarantee absolute pro-tection for youths and that children should not use the internet without their parents´ supervision.4. Those sites which are regarded illegal according to national legislation will be excluded from the result lists as soon as the operators know about them and have access to the illegal sites on the index.5. For handling the users´ data there is the princi-ple of data-thriftiness.This “Code of Conduct” was developed by Carsten Welp. It was first published in: Marcel Machill and Carsten Welp : Wegweiser im Netz. Gütersloh: Bertelsmann Stiftung 2003. Republished and trans-lated by kind permission of Marcel Machill. (shrink)

ABSTRACT: One important criticism of algorithmic systems is that they lack transparency. Such systems can be opaque because they are complex, protected by patent or trade secret, or deliberately obscure. In the EU, there is a debate about whether the General Data Protection Regulation (GDPR) contains a “right to explanation,” and if so what such a right entails. Our task in this chapter is to address this informational component of algorithmic systems. We argue that information access is integral (...) for respecting autonomy, and transparency policies should be tailored to advance autonomy. -/- To make this argument we distinguish two facets of agency (i.e., capacity to act). The first is practical agency, or the ability to act effectively according to one’s values. The second is what we call cognitive agency, which is the ability to exercise what Pamela Hieronymi calls “evaluative control” (i.e., the ability to control our affective states, such as beliefs, desires, and attitudes). We argue that respecting autonomy requires providing persons sufficient information to exercise evaluative control and properly interpret the world and one’s place in it. We draw this distinction out by considering algorithmic systems used in background checks, and we apply the view to key cases involving risk assessment in criminal justice decisions and K-12 teacher evaluation. -/- The link below is to an open access version of the chapter. (shrink)

Dans un cadre réglementaire de mise sur le marché des substances chimiques, l’information sur les risques chimiques pour la santé et l’environnement doit être généralement produite par les industriels, qui la soumettent aux agences sanitaires. L’accès du public à cette information est régulé par des dispositifs juridiques internationaux, européens et nationaux, et fondé sur les principes de transparence et de liberté d’accès et de réutilisation. Cependant, différents facteurs restreignent l’effectivité du droit à l’information et par conséquent le (...) contrôle démocratique et scientifique sur l’évaluation du risque. Les textes juridiques sont éclatés entre la législation environnementale et celle sur l’accès aux données publiques. Le droit d’accès peut être limité juridiquement pour des raisons de confidentialité et de secret industriel, des dispositions qui permettent aux entreprises de protéger leurs intérêts commerciaux mais qui peuvent être interprétés de manière arbitraire par les agences. Enfin sur le plan pratique, le manque de lisibilité du format, le langage employé et les interfaces peuvent constituer des obstacles à l’accès effectif et à la réutilisation des données.Under the regulations governing marketing authorisation for chemical substances, information on chemical risks to health and the environment generally has to be produced by the industries concerned for submission to the health agencies. Public access to this information is governed by international, European and national legal provisions, and based on the principles of transparency and the freedom to access and re-use the information. However, various factors are restricting the effectiveness of this right to information and, consequently, restricting democratic and scientific oversight of risk assessments. The relevant legal texts are split between environmental legislation and legislation on access to public data. The right of access can be legally limited on grounds of confidentiality and protection of trade secrets, under provisions that allow businesses to protect their commercial interests but which can be interpreted arbitrarily by the health agencies. Finally, on the practical level, the lack of clarity of the format, the language used and the interfaces can be an obstacle to effective access and re-use of the data. (shrink)

Opacity, in Metzinger’s sense, is access to processed information _as_ processed, while transparency is only access to the _content _of our phenomenal states. I suspect that transparency conflates different notions. First I show that every conscious experience has a “transparent” core (involving intentionality, directedness and assumption of existence, insensitivity to some unconscious process). Anyway, to be sensitive to earlier processing steps does not imply to take the representation “as modeled by our simulator”. There are other ways of (...) being sensitive to this processing experience: experience of gaps in perceptive synthesis, experience of incompleteness, queerness of experience, phenomenal incoherence, searching consciousness. Many of them implies only to put in abeyance incoherence or incompleteness (to be laterally aware of a conflict without dealing with it), or even to put this abeyance into abeyance (not to take into account the absence of solution). But if the conflict becomes serious, we revise our assumption, and this requires the assumption that the conflict is about existing things. The self has a peculiar property here. Even when I revise one aspect of my self, I have to presuppose a self, in the sense that I put in abeyance other revisions of this presupposed self. Self is not a simulation, even if we have only this peculiar access to it. <b> </b>. (shrink)

In the face of ubiquitous information communication technology, the presence of blogs, personal websites, and public message boards give the illusion of uncensored criticism and discussion of the ethical implications of business activities. However, little attention has been paid to the limitations on free speech posed by the control of access to the Internet by private entities, enabling them to censor content that is deemed critical of corporate or public policy. The premise of this research is that transparency (...) alone will not achieve the desired results if ICT is used in a one way system, controlled by the provider of information. Stakeholders must have an avenue using the same technology to respond to and interact with the information. We propose a model that imposes on corporations a public trust, requiring these gatekeepers of communication technology to preserve individual rights to criticism and review. (shrink)

Freedom of Information Acts (FOIA) are valuable legal tools to access information held by public authorities but during the first wave of the Covid-19 pandemic time frames to reply to requests were de jure or de facto suspended in many countries. However, the lack of effective legal tools to achieve transparency was not automatically paired with governmental secrecy. This research paper analyses which are the factors that prompted some governments to move from secrecy to transparency while the (...) essential legal tool to achieve disclosure of information was not available. It focuses on the role of ‘ecologies of transparency’, a concept developed by Seth Kreimer to describe how FOIA needs to be understood as functioning within a collection of factors and actors. Yet, can transparency ecologies still force disclosure of information when FOIA is suspended? Research focuses on a comparative case study about transparency of scientific committees advising governments on Covid-19 in the UK and in Spain. In both countries, members and minutes were initially secret, but the British government published information before being forced by FOIA, while the Spanish executive only released partial information when FOIA was reactivated. The paper argues that information disclosure processes can be understood as supply and demand models. On the demand side, it highlights the role of adversarial press, scientific community, whistle-blowers, the opposition and critics within the governing party as decisive factors within the transparency ecology. On the supply side, it focuses on legitimation needs from the government to explain different outcomes. (shrink)

Within Western approaches to disability, the expectation for disabled people to ‘prove our disability’ is not only central for receiving access supports, but also for being accepted by those around us. Disabled people must make themselves intelligible to the able-bodied world under the threat of not getting one’s needs met, exclusion, and violence. In this paper I argue that Édouard Glissant is important to bring into conversation with issues in disability studies for two reasons: First, Glissant’s account of compulsory (...) transparency illuminates the underlying colonial values that inform the assumption that we need to understand someone’s disability in order to provide access and respect. Second, Glissant’s argument for the right to opacity creates a potential avenue to rethink an approach to access that is not predicated on being fully understood or rendered fully visible by means of reductive, able-bodied categories: the right to access opacity. (shrink)

Starting March 2020, Romania has been faced with a health crisis caused by the Covid-19 pandemic, a crisis reflected in media communication. In such situations, media play a crucial role in making relevant information timely and accessible, to help people learn about and understand what this pandemic is and how it is assessed, how to protect themselves, and what measures are taken by the authorities. This study aims to analyse how Romanian students keep informed during this national and global (...) crisis, which also generates adjacent media phenomena such as an increase in misinformation, lack of transparency in communicating with the public or over-abundance of information. To this end, we applied a questionnaire which was answered by 426 students from a public university in Romania. The results show that students use many sources to get the information they consider important, believe that the types of messages that help them feel properly informed about the pandemic and its implications: data, figures, accurate facts, and the information received from authorities or experts and that they prefer multimedia digital content. Young people tend to be cautious concerning the transparency of official communication and continue to consume information transmitted by the mainstream media, perceived as being more credible than other news sites. (shrink)

In Infotopia, citizens enjoy a wide range of information about the organizations upon which they rely for the satisfaction of their vital interests. The provision of that information is governed by principles of democratic transparency. Democratic transparency both extends and critiques current enthusiasms about transparency. It urges us to conceptualize information politically, as a resource to turn the behavior of large organizations in socially beneficial ways. Transparency efforts have targets, and we should think of those targets as (...) large organizations: public and civic, but especially private and corporate. Democratic transparency consists of four principles. First, information about the operations and actions of large organizations that affect citizens’ interests should be rich, deep, and readily available to the public. Second, the amount of available information should be proportionate to the extent to which those organizations jeopardize citizens’ interests. Third, information should be organized and provided in ways that are accessible to individuals and groups that use that information. Finally, the social, political, and economic structures of society should be organized in ways that allow individuals and groups to take action based on Infotopia’s public disclosures. (shrink)

Carruthers argues that knowledge of our own propositional attitudes is achieved by the same mechanism used to attain knowledge of other people's minds. This seems incompatible with "privileged access"---the idea that we have more reliable beliefs about our own mental states, regardless of the mechanism. At one point Carruthers seems to suggest he may be able to maintain privileged access, because we have additional sensory information in our own case. We raise a number of worries for this (...) suggestion, concluding that Carruthers's new theory cannot clearly preserve the superior reliability of our beliefs about our own attitudes. (shrink)

Background Rapid ethical access to personal health information to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences. Methods A total of 183 patients in the pandemic cohort completed the survey via email, and (...) responses were compared to the distinct pre-pandemic cohort ; all were patients of a large Canadian cancer center. The survey covered broad versus study-specific consent; opt-in versus opt-out contact approach; levels of comfort sharing with different recipients; perceptions of commercialization; and options to track use of information and be notified of results. Four focus groups were subsequently conducted to elucidate reasons motivating dominant preferences. Results Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples, sharing information with the health care institution, sharing information with researchers at other hospitals, sharing PHI provincially, nationally and internationally compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts. Significantly more pandemic cohort patients expressed a wish to track use of PHI, and to be notified of results. Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved. Conclusions In pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort remained unchanged. Focus groups identified that the ability to track and receive results of studies using one’s PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises. (shrink)

The initial successes in recent years in harnessing machine learning technologies to improve medical practice and benefit patients have attracted attention in a wide range of healthcare fields. Particularly, it should be achieved by providing automated decision recommendations to the treating clinician. Some hopes placed in such ML-based systems for healthcare, however, seem to be unwarranted, at least partially because of their inherent lack of transparency, although their results seem convincing in accuracy and reliability. Skepticism arises when the physician as (...) the agent responsible for the implementation of diagnosis, therapy, and care is unable to access the generation of findings and recommendations. There is widespread agreement that, generally, a complete traceability is preferable to opaque recommendations; however, there are differences about addressing ML-based systems whose functioning seems to remain opaque to some degree—even if so-called explicable or interpretable systems gain increasing amounts of interest. This essay approaches the epistemic foundations of ML-generated information specifically and medical knowledge generally to advocate differentiations of decision-making situations in clinical contexts regarding their necessary depth of insight into the process of information generation. Empirically accurate or reliable outcomes are sufficient for some decision situations in healthcare, whereas other clinical decisions require extensive insight into ML-generated outcomes because of their inherently normative implications. (shrink)

Personal Information Management Systems (PIMS) aim to facilitate the sharing of personal information and protect privacy. Efforts to enhance privacy management, aligned with established privacy policies, have led to guidelines for integrating transparent notices and meaningful choices within these systems. Although discussions have revolved around the design of privacy-friendly systems that comply with legal requirements, there has been relatively limited philosophical discourse on incorporating the value of privacy into these systems. Exploring the connection between privacy and personal autonomy (...) illuminates the instrumental value of privacy and highlights the importance of intentionally embedding the value of privacy into these systems. To translate the value of privacy into concrete design requirements, this study constructs a values hierarchy consisting of values, norms, and design requirements. After analyzing the relationships between privacy and autonomy and identifying norms, the design requirements translated from the norms associated with the components of personal autonomy are specified at the lowest layer. These requirements include a design to prevent unauthorized access and dark patterns and to provide effective and efficient notices and choices. The findings contribute to expanding the requirements for designing the aspect of privacy as a legal requirement to incorporate the value of privacy into systems. (shrink)

The right of access to documents is constitutionally based in Sweden and has a long history. The right of access is considered crucial to Swedish democracy. On entering the EU in 1995, Sweden declared that public access to official records forms part of Sweden’s constitutional, political and cultural heritage. The members of the EU for their part declared that they took it for granted that Sweden would fully comply with Community, now Union, law with respect to openness (...) and transparency. Sweden continues to push for transparency when EU legislation potentially containing secrecy clauses is negotiated in the EU. It turns out, however, that the EU membership does pose challenges to the strong Swedish right of access to documents. The protection of personal data is controversial in Sweden to the extent that the stricter EU legislation clashes with the traditionally weak protection of privacy in Swedish law; the right of access to information has largely overridden the right to privacy. Large amounts of publicly available personal data, amassed in data bases by private actors, for commercial reasons but under the protection of the Swedish constitution, is causing problems especially since the Swedish constitutional law is considered, by Sweden, to precede EU legislation in the field. Sweden will somehow have to solve the dilemmas caused by the differing traditions of transparency between itself and other members of the EU and of other international organizations. Many answers – perhaps converging - will be provided in 2016 by Swedish official inquiries and the EU Regulation.Article first published online: 22 MARCH 2016. (shrink)

Medical assistance in dying (MAiD) in Canada is a complex, novel interprofessional practice governed by stringent legal criteria. Often, patients need assistance navigating the system, and MAiD providers/assessors struggle with the administrative challenges of MAiD. Resultantly, the role of the MAiD care coordinator has emerged across the country as a novel practice dedicated to supporting access to MAiD and ensuring compliance with regulatory requirements. However, variability in the roles and responsibilities of MAiD care coordinators across Canada has highlighted the (...) need for accountability and standardization for this practice. This manuscript constitutes a first attempt to describe this emerging role, through discussion of proposed standards of practice, as well as roles and responsibilities, and ethical duties of this emergent professional practice. We detail the core commitments of MAiD care coordinators to patients, providers/assessors and institutions involved in the MAiD process. We address the core competencies that inform the unique skillset required by MAiD care coordinators to facilitate high-quality care, while highlighting the moral and ethical considerations embedded in this work. To illustrate the complexity of the MAiD care coordinator role, case examples involving ethical dilemmas encountered in practice are included. Finally, a code of ethics is proposed to serve as a guide for appropriate professional practice and conduct. This manuscript is intended to illustrate the importance of transparency and accountability for this new role that provides service to vulnerable patients and families; this is especially critical as the ethical complexity of MAiD is likely to increase with future changes in legislation opening MAiD access to new populations. (shrink)

The objective of the current paper is to provide a critical analysis of Dretske's defense of the naturalistic version of the privileged accessibility thesis. Dretske construed that the justificatory condition of privileged accessibility neither relies on the appeal to perspectival ontology of phenomenal subjectivity nor on the functionalistic notion of accessibility. He has reformulated introspection (which justifies the non-inferentiality of the knowledge of one's own mental facts in an internalist view) as a displaced perception for the defense of naturalistic privileged (...) accessibility. Both internalist and externalist have been approved the plausibility of first-person authority argument through privileged accessibility; however, their disagreement lies on the justificatory condition of privileged accessibility. Internalist hold the view that the justificatory warrant for privileged accessibility is grounded on phenomenal subjectivity. In contrast to the internalist view, externalists uphold the view that the justificatory condition for privileged accessibility lies outside the domain of phenomenal subjectivity. As a proponent of naturalistic content externalism, Dretske defends the view that subject's privileged accessibility is not due to having access to the particular representational state (hence, they have the privilege of getting sensory representational information) and the awareness of mental fact rather the awareness of the whole representational mechanism. Having the knowledge of a particular representational state through privileged access is not the sufficient condition for the accuracy of knowledge about one’s own mental facts. The justificatory warrant lies external to the subject. Even though Dretske’s naturalistic representation is not plausible enough while dealing with the reduction of phenomenal qualities of experience, however, provides a new roadmap to compatibilists for the defense of privileged accessibility and has a major impact on transparency theorists. (shrink)

I. EXECUTIVE SUMMARY The MRCT Center Post-trial Responsibilities: Continued Access to an Investigational Medicine Framework outlines a case-based, principled, stakeholder approach to evaluate and guide ethical responsibilities to provide continued access to an investigational medicine at the conclusion of a patient’s participation in a clinical trial. The Post-trial Responsibilities (PTR) Framework includes this Guidance Document as well as the accompanying Toolkit. A 41-member international multi-stakeholder Workgroup convened by the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and (...) Harvard University (MRCT Center) developed this Guidance and Toolkit. Project Motivation A number of international organizations have discussed the responsibilities stakeholders have to provide continued access to investigational medicines. The World Medical Association, for example, addressed post-trial access to medicines in Paragraph 34 of the Declaration of Helsinki (WMA, 2013): “In advance of a clinical trial, sponsors, researchers and host country governments should make provisions for post-trial access for all participants who still need an intervention identified as beneficial in the trial. This information must also be disclosed to participants during the informed consent process.” This paragraph and other international guidance documents converge on several consensus points: • Post-trial access (hereafter referred to as “continued access” in this Framework [for terminology clarification – see definitions]) is the responsibility of sponsors, researchers, and host country governments; • The plan for continued access should be determined before the trial begins, and before any individual gives their informed consent; • The protocol should delineate continued access plans; and • The plan should be transparent to potential participants and explained during the informed consent process. -/- However, there is no guidance on how to fulfill these responsibilities (i.e., linking specific responsibilities with specific stakeholders, conditions, and duration). To fill this gap, the MRCT Center convened a working group in September of 2014 to develop a framework to guide stakeholders with identified responsibilities. This resultant Framework sets forth applicable principles, approaches, recommendations and ethical rationales for PTR regarding continued access to investigational medicines for research participants. (shrink)

A recently enacted law permits patients to see their electronic medical record (EMR) immediately after their careprovider writes in it. In this article I discuss a proposal that authors make in this issue of The Journal of Clinical Ethics, that ethics consultants (ECs) keep their notes in a separate section of the EMR that patients cannot access when their ethics notes may be troubling to patients, to avoid unduly harming them.I discuss this concern and three more widely applicable clinical (...) goals: to help patients feel safe; to gain patients’ trust; and to provide hope to patients, when possible. These goals apply to careproviders and ECs who seek to help patients and families resolve ethical conflicts. I explain why these goals are singularly important and how careproviders may pursue them, using as an example informing patients about temporal framing to help them find hope. (shrink)

Objective: Collaborative governance is an innovative approach to address complex societal challenges, involving partnerships between state and non-state actors. Consequently, social media is powerful tools for promoting transparency and accountability. Methodology: The study examines the role of non-state actors in leveraging social media to enhance transparency in collaborative governance initiatives. The research analyses two case studies - the #FeesMustFall campaign in South Africa and the #Tajamuka/Sesijikile campaign in Zimbabwe. Results: Through a qualitative analysis of the case studies, the study explores (...) how non-state actors, such as civil society organizations and activist groups, have utilized social media to amplify their voices, mobilize public support, and exert pressure on government entities. Findings reveal that effective use of social media can empower non-state actors to overcome information asymmetries, facilitate public scrutiny, and foster collaborative problem-solving. Conclusions: However, contextual factors, such as political environments and digital access, shapes the dynamics of social media-driven transparency efforts. (shrink)

PurposeThe purpose of this paper is to reconsider the concept of the right to information privacy and to propose, from a Japanese perspective, a revised conception of this right that is suitable for the modern information society.Design/methodology/approachFirst, the concept of privacy and personal information protection in the information society is briefly explained. After that, confused situations in Japan caused by the enforcement of Act on the Protection of Personal Information are described followed by the analysis (...) of the Japanese socio‐cultural circumstances surrounding privacy. Based on these, the effectiveness of the concept of the right to information privacy in the Japanese socio‐cultural and economic context is examined and the need to rethink the concept of the right to information privacy discussed. Finally, a revised conception of the right is proposed.FindingsIn view of the circumstances in Japan, the concept of the right to information privacy, defined as “an individual's right to control the circulation of information relating to him/herself”, as well as the Organisation for Economic Co‐operation and Development's eight principles already become outdated in today's sophisticated information‐communication society. There is a need to control/restrict use of personal information so that individuals' autonomy and freedom is ensured in the current situation and to revise the concept of the right to information privacy based on this idea.Originality/valueThis paper proposes a revision of the concept of the right to information privacy focused on control of, not access to, use of personal information. The revised concept is defined so that individuals' autonomy and freedom is ensured even in the “informational transparent” society. (shrink)

This paper presents two projects concerned with the application of natural language processing technology for improving communication between Public Administration and citizens. The first project, GIST,is concerned with automatic multilingual generation of instructional texts for form-filling. The second project, TAMIC, aims at providing an interface for interactive access to information, centered on natural language processing and supposed to be used by the clerk but with the active participation of the citizen.

The article is devoted to study of totalitarian and democratic types of rhetoric. The classical dichotomy of rhetorical influence has been discovered: monologic use of rhetoric as a verbal weapon through propaganda, demagoguery, populism, creation of the image of an enemy, division of society and dialogical use of rhetoric as consolidating communication, truth-seeking, social consent and understanding. It is shown that the trigger of democratic and totalitarian regimes is the existential of freedom. The active influence of the postmodern rhetoric of (...) the information age in its performativity in the acquisition of snack culture is determined, which significantly strengthens the manipulative strategies. Totalitarian tendencies of digital rhetoric are found in information warfare technologies, in the processes of censorship, ambivalence and negativism of information, spreading fake news, igniting conflicts in mass media. Militarization of vocabulary and spread of obscene language in ordinary communication as factors of compensatory aggression of the population, the danger of excessive information transparency of people’s private lives are noted. Democratism of the digital rhetoric is manifested in such phenomena as the direct creation of e-democracy, access of citizens to e-voting, e-services, e-petitions, overcoming digital inequality, the ability to communicate with officials and public officers live on TV and radio, in social networks. Democratic principles of rhetoric, especially in Ukraine as a state of “transitional democracy” should be supported by quality education, fostering critical thinking and activity of civil society. (shrink)

BackgroundThe Freedom of Information Act (FOIA) provides access to unreleased government records that can be used to enhance the transparency and integrity of biomedical research. We characterized FOIA requests to Department of Health and Human Services (HHS) agencies, including request outcomes, processing times, backlogs, and costs.MethodsUsing HHS FOIA annual reports, we extracted data on the number of FOIA requests received and processed by HHS agencies between 2008 and 2017, as well as request outcomes. Processing times were reported in (...) three time increments, < 1–20, 21–60, or 61+ days, and trends in backlog status were also described. Information about costs and fees collected were aggregated.ResultsBetween 2008 and 2017, 69.6% of 530,094 HHS FOIA requests were received by the Centers for Medicare and Medicaid Services (CMS), 18.9% by the Food and Drug Administration (FDA), and 11.6% by all other HHS agencies. During this period, CMS processed 374,728 requests, FDA 114,938, and other HHS agencies 61,890. CMS and FDA reduced backlogged requests by 9396 (89.7%) and 4289 (65.3%), respectively, leaving backlogs of 1081 and 2279 requests at the end of 2017. CMS fully or partially granted 60.3% of requests whereas FDA fully or partially granted 72.4%. Of all requests to CMS, 82.0% were considered simple and 18.0% complex; 82.2% of simple requests and 54.9% of complex requests were processed in 20 days, and 5.6% and 29.9% were processed in 61+ days. In contrast, 60.2% of requests to FDA were considered simple and 39.8% complex; 28.8% of simple requests and 9.0% of complex requests were processed in 20 days, and 58.3% and 81.5% were processed in 61+ days. The costs to HHS associated with FOIA requests totaled $446.4 million ($809 per processed request), increasing from $28.1 million ($423 per request) in 2008 to $53.3 million ($1544 per request) in 2017. In total, HHS collected $8.5 million in fees (1.9% of total costs).ConclusionsFOIA is frequently used to obtain information about HHS and its agencies. With growing costs, minimal fees collected, and lengthy processing times, HHS agencies’ FOIA programs might be made more efficient through greater proactive record disclosure. (shrink)

Privacy is a relational and relative concept that has been defined in a variety of ways. In this paper we offer a systematic discussion of potentially different notions of privacy. We conclude that privacy as the freedom or immunity from the judgement of others is an extremely useful concept to develop ways in which to understand privacy claims and associated risks. To this end, we develop a framework of principles that explores the interrelations of interests and values for various stakeholders (...) where privacy concerns have risen or are expected to rise. We argue that conflicts between the interests and values of different stakeholders may result in legitimate claims of privacy/transparency being ignored or underrepresented. Central to this analysis is the notion of a stakeholder. We argue that stakeholders are persons or groups with legitimate interests, of intrinsic value, in the procedural and/or substantive aspects of the privacy/transparency claim and subsequent judgements on that basis. Using the principles of access, representation, and power, which flow from our framework of analysis, we show how they can facilitate the identification of potential privacy/transparency risks using examples from the British National Health Service. (shrink)

It is reasonable to consider and trust that information taken from us about our medical health and history will be protected by rules on confidentiality and consent. Apart from very rare cases, perhaps of major public interest or for public health reasons, this information will not be shared with others without our consent. However, both a number of reforms in National Health Service patient data management policy (now enshrined in legislation) and developments in the general law on privacy (...) challenge this traditional view of our control and choice over our medical information, as this article will show. In doing so, it analyses the question as to whether in spite of the rhetoric do any of us now really have choice over the access to and use of our medical data? In reality, our choices are limited and in any relationship of trust and shared decision making this ought to be transparent. (shrink)

In our attempts to achieve privacy and reputation deliverables, advocating for service providers and other data managers to open Big Data black boxes and be more transparent about consent processes, algorithmic details, and data practice is easy. Moving from this call to meaningful forms of transparency, where the Big Data details are available, useful, and manageable is more difficult. Most challenging is moving from that difficult task of meaningful transparency to the seemingly impossible scenario of achieving, consistently and ubiquitously, meaningful (...) forms of consent, where individuals are aware of data practices and implications, understand these realities, and agree to them as well. This commentary unpacks these concerns in the online consent context. It emphasizes that self-governance fallacy pervades current approaches to achieving digital forms of privacy, exemplified by the assertion that transparency and information access alone are enough to help individuals achieve privacy and reputation protections. (shrink)

Article 12 of the General Data Protection Regulation (GDPR) requires data controllers to provide data subjects with any information relating to data processing operations “in a concise, transparent, intelligible and easily accessible form, using clear and plain language.” Linguistic inclusivity of privacy policies is no longer a matter of style, but has been a binding legal requirement under the new data protection framework. Article 5 GDPR sets forth the requirements of lawfulness, fairness and transparency and prohibits any data processing (...) operations which do not meet the standards of specification, explicitness and legitimacy of processing purposes [ 29 ]. In this study, a quantitative and qualitative analysis of linguistic indeterminacy in a corpus of 350 online privacy policies is presented and it is argued that a considerable number of data controllers continue to make use of strategic vagueness in the context of purpose limitation, therefore potentially prejudicing compliance with the GDPR. A legal-linguistic perspective on the current challenges of informed consent in European data protection law is provided. Finally, it is concluded that while the GDPR has contributed significantly to the linguistic empowerment of the data subject, the framework fails to satisfy the expectation of creating a participatory culture (see [ 36 ]) with a high degree of informational self-determination. (shrink)

An emerging approach to complement randomised controlled trial (RCT) data in the development of radiotherapy treatments is to use routinely collected ‘real-world’ data (RWD). RWD is the data collected as standard-of-care about all patients during their usual cancer care pathway. Given the nature of this data, important questions remain about the permissibility and acceptability of using RWD in routine practice. We involved and engaged with patients, carers and the public in a two-day citizens’ jury to understand their views and obtain (...) decisions regarding two key issues: (1) preferred approaches to consent for the use of RWD within the context of patients receiving radiotherapy for lung cancer in RAPID-RT and (2) how RWD use should be best communicated to patients. Individual views were polled using questionnaires at various stages of the jury, whilst group discussion activities prompted further dialogue about the rationale behind choices of consent. Key decisions obtained from the jury include: (1) an opt-out approach to consent for the use of RWD; (2) the opt-out approach to consent should be informed. Furthermore, it was advised that information and communication regarding the consent process and use of RWD should be accessible, clear and available in a variety of formats. It is important that the consent process for patient data use is underpinned by principles of autonomy and transparency with clear channels of communication between those asking for and giving consent. Moreover, the process of seeking consent from patients should be proportionate to the risks presented from their participation. (shrink)