The doctor-patient relationship is built on an implicit covenant of trust, yet it was not until the post-World War Two era that respect for patient autonomy emerged as an article of mainstream medical ethics. Unlike their medical forebears, physicians today are expected to furnish patients with adequate information about diagnoses, prognoses and treatments. Against these dicta there has been ongoing debate over whether placebos pose a threat to patient autonomy. A key premise underlying medical ethics discussion is the notion (...) that the placebo effect necessitates patient deception. Indeed, the American Medical Association guidelines imply that placebo treatment necessary entails a form of deception. As a consequence of this assumption, the fulcrum of debate on the use of placebo treatment has hinged on whether that deception is ever justified. Recently performed experiments with open-label transparently prescribed placebos have begun to challenge the notion that deception is necessary in eliciting the placebo effect and such effects necessarily involve a binary distinction between autonomy and beneficence. In this article we focus on the content of disclosures in distinctive open-label, transparently disclosed placebo studies and inquire whether they might be said to invoke deception in clinical contexts, and if so, whether the deception is unethical. We find that open placebos may be said to involve equivocation over how placebos work. However, drawing on surveys of patient attitudes we suggest that this equivocation appears to be acceptable to patients. We conclude that open placebos fulfil current American Medical Association guidelines for placebo use, and propose future research directions for harnessing the placebo effect ethically. (shrink)

Over the past years, a growing number of countries have legislated open-identity donation, in which donor-conceived offspring are given access to the donor’s identity once the child has reached maturity. It is held that donor anonymity creates identity problems for such children similar to the “genealogical bewilderment” described within the adoption context. The study of the social and psychological effects of open-identity donation is still very much in its infancy, but what has been left unquestioned is whether offering access to (...) the donor’s name and address is an adequate response to such effects. This study has two goals: First, we aim to provide a systematic review of the reasons why donor-conceived offspring want to know the identity of their sperm donor. Second, we examine to what extent the provision of donor-identifying information can satisfy the reasons mentioned. The most important motivations appear to be: to avoid medical risks and consanguineous relationships; to satisfy curiosity; to learn more about the self or to complete one’s identity; to learn more about what kind of person the donor is ; to form a relationship with the donor and/or his family; and to learn about one’s ancestry/genealogy. Our analysis shows that for nearly all of these reasons access to the donor’s identity is not necessary. In those cases where it is, moreover, donor identification is not sufficient. What is really needed is contact with the donor, rather than the mere provision of his name. (shrink)

This article aims at introducing the matrixial theory of Bracha L. Ettinger to the field of academic teaching. As it intends to prove, feminist pedagogy would benefit from a matrix-informed approach to teaching, especially in the times of social distancing imposed by the COVID-19 pandemic. Since of all student groups it is the university students who have been most directly affected by precarity and employment instability, they seem to be in an urgent need of openness, compassion, and understanding; the (...) matrixial theory – as this article demonstrates – responds to this necessity. Bracha L. Ettinger is a psychoanalyst, feminist, artist, and daughter of Holocaust survivors; her matrixial theory, based on the notions of the matrix and subjectivity-as-encounter, is a feminist supplement to psychoanalysis. The article begins with introducing the underpinnings of this psychoanalytical system and outlining its application in various areas, ranging from art history to trauma studies. Subsequently, the research joining Ettinger’s work and pedagogy is analysed; as it is shown, while these studies recognise the pedagogical potential of the matrixial theory, their scope is currently reduced to art-related disciplines. The next part is devoted to selected matrixial concepts that come out as especially relevant in the pedagogical context. What the article offers is a theoretical incentive to reflect on an approach to teaching based on reciprocity, responsibility, and participation despite the limit posed by the computer screen: an approach which – in the times of global precarity – can help define anew the student–teacher partnership. (shrink)

This paper argues for subsuming the question of open data within a larger question of information justice, with the immediate aim being to establish the need for rather than the principles of such a theory. I show that there are several problems of justice that emerge as a consequence of opening data to full public accessibility, and are generally a consequence of the failure of the open data movement to understand the constructed nature of data. I examine three such (...) problems: the embedding of social privilege in datasets as the data is constructed, the differential capabilities of data users, and the norms that data systems impose through their function as disciplinary systems. In each case I show that open data has the quite real potential to exacerbate rather than alleviate injustices. This necessitates a theory of information justice. I briefly suggest two complementary directions in which such a theory might be developed: one defining a set of moral inquiries that can be used to evaluate the justness of data practices, and another exploring the practices and structures that a social movement promoting information justice might pursue. (shrink)

The philosophy of information (PI) is a new area of research with its own field of investigation and methodology. This article, based on the Herbert A. Simon Lecture of Computing and Philosophy I gave at Carnegie Mellon University in 2001, analyses the eighteen principal open problems in PI. Section 1 introduces the analysis by outlining Herbert Simon's approach to PI. Section 2 discusses some methodological considerations about what counts as a good philosophical problem. The discussion centers on Hilbert's famous (...) analysis of the central problems in mathematics. The rest of the article is devoted to the eighteen problems. These are organized into five sections: problems in the analysis of the concept of information, in semantics, in the study of intelligence, in the relation between information and nature, and in the investigation of values. (shrink)

Information entities are used in ontologies to represent engineering technical specifications, health records, pictures or librarian data about, e.g., narrative fictions, among others. The literature in applied ontology lacks a comparison of the state of the art, and foundational questions on the nature of information entities remain open for research. The purpose of the paper is twofold. First, to compare existing ontologies with both each other and theories proposed in philosophy, semiotics, librarianship, and literary studies in order to (...) understand how the ontologies conceive and model information entities. Second, to discuss some open research challenges that can lead to principled approaches for the treatment of information entities, possibly by getting into account the variety of information entity types found in the literature. (shrink)

The subject of the article encompasses the change in social communication concerning the creation of new competition between two knowledge systems: the expert system and the system of dispersed knowledge. The expert model is the one in which knowledge is created only by the sender endowed with institutional authority. In opposition to this, there exist an alternative model which is characterized by so many existing decentralized, not-institutionalized centers of information processing and dissemination. This division can be described only in (...) a strictly informative dimension. Social aspect is also important, more precisely the question of social stratification forming on the basis of access criteria to every source of knowledge defined this way.The article tries to describe the relation between the worlds of: producers and consumers of information, experts and laymen, professionals and amateurs. The analysis of the problem, in author’s mind, is the beginning of the debate over the role and forms of scientific knowledge protection functioning in the time of development of information society. (shrink)

In his article Open Problems in the Philosophy of Information 1 Luciano Floridi presented a Philosophy of Information research program in the form of eighteen open problems, covering the following fundamental areas: Information definition, information semantics, intelligence/cognition, informational universe/nature and values/ethics. We revisit Floridis program, highlighting some of the major advances, commenting on unsolved problems and rendering the new landscape of the Philosophy of Information emerging at present. As we analyze the progress of PI we (...) try to situate Floridis program in the context of scientific and technological development that have been made last ten years. We emphasize that Philosophy of Information is a huge and vibrant research field, with its origins dating before Open Problems, and its domains extending even outside their scope. In this paper, we have been able only to sketch some of the developments during the past ten years. Our hope is that, even if fragmentary, this review may serve as a contribution to the effort of understanding the present state of the art and the paths of development of Philosophy of Information as seen through the lens of Open Problems. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (‘open notes’). However, even in countries that (...) have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

This article focuses on whether a certain form of consent used by biobanks – open consent – is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consent once from the data subject for all future research uses of genetic material and data. However, as biobanks process personal data, they must comply with data protection law. Data protection law is currently undergoing reform. The Proposed Data Protection Regulation is the culmination of this reform and, (...) if voted into law, will constitute a new legal framework for biobanking. The Regulation puts strict conditions on consent – in particular relating to information which must be given to the data subject. It seems clear that open consent cannot meet these requirements. 4 categories of information cannot be provided with adequate specificity: purpose, recipient, possible third country transfers, data collected. However, whilst open consent cannot meet the formal requirements laid out by the Regulation, this is not to say that these requirements are substantially undebateable. Two arguments could be put forward suggesting the applicable consent requirements should be rethought. First, from policy documents regarding the drafting process, it seems that the informational requirements in the Regulation are so strict in order to protect the data subject from risks inherent in the use of the consent mechanism in a certain context – exemplified by the online context. There are substantial differences between this context and the biobanking context. Arguably, a consent transaction in the biobanking does not present the same type of risk to the data subject. If the risks are different, then perhaps there are also grounds for a reconsideration of consent requirements? Second, an argument can be made that the legislator drafted the Regulation based on certain assumptions as to the nature of ‘data’. The authors argue that these assumptions are difficult to apply to genetic data and accordingly a different approach to consent might be preferable. Such an approach might be more open consent friendly. (shrink)

A thematic priority of the European Union’s Framework V research and development programme was the creation of a user-friendly information society which met the needs of citizens and enterprises. In practice, though, for example in the case of on-line digital music, the needs of citizens and enterprises may be in conflict. This paper proposes to leverage the appearance of ‘intelligence’ in the platform layer of a layered communications architecture to avoid such conflicts in similar applications in the future. The (...) key idea is that if the intelligence is encapsulated in an agent, then the agents should be organized as a society, and then the rules of the society can be used to ensure ‘responsible’ behaviour. We discuss how an agent society can be used to regulate behaviour in future information trading scenarios, and conclude that this approach offers a ‘third way’ which can satisfy the (reasonable) needs of both citizens and enterprises in the user-friendly information society. (shrink)

This paper proposes the use of an argumentation framework with recursive attacks to address a trust model in a collaborative open multi-agent system. Our approach is focused on scenarios where agents share information about the credibility (informational trust) they have assigned to their peers. We will represent informants’ credibility through credibility objects which will include not only trust information but also the informant source. This leads to a recursive setting where the reliability of certain credibility information depends (...) on the credibility of other pieces of information that should be subject to the same analysis. Credibility objects are maintained in a credibility base which can have information in conflict. In this scenario, we will formally show that our proposal will produce a partially ordered credibility relation; such relation contains the information that can be justified by an argumentation process. (shrink)

This article explores the future impact of an African renaissance with a specific emphasis on information ethics to address the needs of the emerging virtual realm. The four main focus areas include the technologi-cal challenges to deploy ICT infrastructure to enable the delivery of information to the people and to allow for new means of communication. The second focus considers the economic obstacles that need to be consi-dered in the quest to empower average citizens to exercise their right (...) to access information. The third focus addresses the linguistic and cultural realities that hinder the adoption of some ICTs. The final focus considers the legal framework that has to be developed and strengthened to establish citizen‘s rights of access and privacy in cyberspace. (shrink)

This case raises issues regarding the anesthesia and surgical components of preoperative informed consent and the differing views of anesthesiologists and surgeons with regards to informed consent, in the context of conversion to open surgery from a minimally invasive approach.

The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. (...) The precise circumstances under which informed consent must be obtained, and from whom, requires careful consideration. Furthermore, appropriate engagement processes should be central to any introduction of genetically modified mosquitos in proposed target settings. In this work, international guidance documents on informed consent and engagement are reviewed and applied to the genetically modified mosquito research context. Five analogous research endeavours that involve area-wide / open field experiments are reviewed. The approach of each in respect to the solicitation of individual informed consent and community engagement are highlighted. While the solicitation of individual informed consent in host settings of gene drive field trials may not be possible or feasible in some instances, local community and stakeholder engagement will be key to building trust towards the proposed conduct of such research. In this regard, the approaches taken by investigators and sponsors of political science field research and weather modification field research should be avoided. Rather, proponents of gene drive field research should look to the Eliminate Dengue field trials, cluster randomised trials, and pragmatic clinical trials for guidance regarding how the solicitation of individual informed consent of host communities ought to be managed, and how these communities ought to be engaged. (shrink)

Informed consent, decision-making styles and the role of patient–physician relationships are imperative aspects of clinical medicine worldwide. We present the case of a 74-year-old woman afflicted with advanced liver cancer whose attending physician, per request of the family, did not inform her of her true diagnosis. In our analysis, we explore the differences in informed-consent styles between patients who hold an “independent” and “interdependent” construal of the self and then highlight the possible implications maintained by this position in the context (...) of international clinical ethics. Finally, we discuss the need to reassess informed-consent styles suitable to the needs of each patient regardless of whether he or she resides in the United States or in Japan. (shrink)

It is essential for the strategy of open access self-archiving that scientific authors are given comprehensive information on publisher copyright policies. DINI, the German Initiative for Networked Information, has developed a German (and potentially multilingual) interface to the English SHERPA/RoMEO service to provide additional information on German publishers' open access policies. As a next step, this interface was enhanced to an integration layer combining different sources on publisher copyright policies. This integration layer can be used in many (...) different contexts. Together with the SHERPA/RoMEO team, DINI aims to build an international support structure for open access information. (shrink)

Mobile health research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE platform now features a community forum, a resource library and a network of nearly 600 (...) global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter. (shrink)

The concepts of placebos and placebo effects refer to extremely diverse phenomena. I recommend dissolving the concepts of placebos and placebo effects into loosely related groups of specific mechanisms, including (potentially among others) expectation-fulfillment, classical conditioning, and attentional-somatic feedback loops. If this approach is on the right track, it has three main implications for the ethics of informed consent. First, because of the expectation-fulfillment mechanism, the process of informing cannot be considered independently from the potential effects of treatment. Obtaining informed (...) consent influences the effects of treatment. This provides support for the authorized concealment and authorized deception paradigms, and perhaps even for outright deceptive placebo use. Second, doctors may easily fail to consider the potential benefits of conditioning, leading them to misjudge the trade-off between beneficence and autonomy. Third, how attentional-somatic feedback loops play out depends not only on the content of the informing process but also on its framing. This suggests a role for libertarian paternalism in clinical practice. (shrink)

This paper discusses operationalization of open educational practices (OEP) using innovative, Internet-influenced pedagogies to expose dangers of post-truth narratives. The first part reviews interpretations of OEP (associated with open-access and tools, collaboration, problem-centered learning, and democratic pedagogy) and explores possibilities for creating educational initiatives where students learn to create problem-solving communities mirroring an informationally healthy society. The second part suggests our society has reached a post-truth crossroads. Post-truth was initially discussed in the 1990s—a reification of critical theorists’ pessimism of social (...) structures, controlling narratives and ways members react to critical events, whether through obedience to institutional authority or support for destructive adventurism, creating situations producing cybernetic double binds. The third part contextualizes OEP as ecologically grounded pedagogies through an open source educational processes framework focusing on productive many-to-many online communication and community formation, offering practical examples of open source educational processes curricula implemented in a higher education setting. (shrink)

Volume 20, Issue 6, June 2020, Page W1-W5.

There is substantial published evidence showing that countless people enroll each year in ethically deficient clinical trials. Many of the trials are problematic because the quality of the science used to justify their launch may not be sufficiently vetted while many other trials may lack requisite social value. This poses the question: why do people volunteer for them? The answer resides in large part in the fact that informed consent practices have historically masked, rather than disclosed, the information that (...) would alert research candidates to the ethically problematic nature of the trials. The “reasonable person” and “key information” provisions in the revised US Common Rule create the opportunity to correct this historical shortcoming. Two sources are employed to shed light on what the “key information” is that should be disclosed to a “reasonable person”: the original disclosure aims of the Nuremberg Code, as well as an extensive body of meta-research evidence. Those sources jointly support a range of new disclosures in the informed consent process that would unmask the heretofore undisclosed information. The resulting proposed new disclosures pertain to the overall success prospects of clinical trials, the quality of the prior research that both forms the basis of clinical trials and informs assessment of their risks and benefits, the potential social value of clinical trials, and the commercial purposes of clinical trials. (shrink)

Informed consent needs to be practised within a culture of openness if it is to enhance public trust in medical procedures around death. Openness should entail patients not just receiving information from doctors, but also having the right to see certain medical procedures. This article proposes in particular that it would be desirable for the public to be allowed to attend an autopsy of a person they do not know. Evidence from the UK, where members of the (...) public may go backstage to witness the process of cremation, the other technical process in which dead bodies are violently but legitimately assaulted, suggests benefits from a policy of openness. When a family consents to cremation in Britain, their consent is only minimally informed, but the system has nothing to hide, and trust is high. This suggests that the opportunity for lay people also to witness certain medical procedures might do more to restore public trust in medical procedures around death than a narrow interpretation of informed consent in which information is controlled by the profession. (shrink)

(1997). Some considerations about interaction and exchange of information between open and self‐organizing systems. World Futures: Vol. 49, The Quest for a Unified Theory of Information, pp. 401-408.

Background Thorough information of the patient is an integral part of the process of shared decision making. We aimed to investigate if detailed information about medication may induce nocebo effects. Methods We conducted a randomized, single-blind, pilot-study including n = 51 psychiatric in-patients aged between 18 and 80 years with a depressive disorder and accompanying sleeping disorders. In the intervention group we provided thorough information about adverse effects, while the control group received only a simple consent procedure. (...) In both groups, patients received an open-label placebo pill instead of their sleeping medication. Results No statistically significant differences between the intervention group and the control group were found regarding the main outcome parameter. Conclusion In this study, we were not able detect an effect of informed consent vs. simple consent on the emergence of placebo or nocebo effects. This finding is contrary to most assumptions and publications about this topic. Trial registration Trial registration number: DRKS00017653, registered August 30th 2018. Retrosprectively registered. (shrink)

Searching for information is critical in many situations. In medicine, for instance, careful choice of a diagnostic test can help narrow down the range of plausible diseases that the patient might have. In a probabilistic framework, test selection is often modeled by assuming that people's goal is to reduce uncertainty about possible states of the world. In cognitive science, psychology, and medical decision making, Shannon entropy is the most prominent and most widely used model to formalize probabilistic uncertainty and (...) the reduction thereof. However, a variety of alternative entropy metrics (Hartley, Quadratic, Tsallis, Rényi, and more) are popular in the social and the natural sciences, computer science, and philosophy of science. Particular entropy measures have been predominant in particular research areas, and it is often an open issue whether these divergences emerge from different theoretical and practical goals or are merely due to historical accident. Cutting across disciplinary boundaries, we show that several entropy and entropy reduction measures arise as special cases in a unified formalism, the Sharma–Mittal framework. Using mathematical results, computer simulations, and analyses of published behavioral data, we discuss four key questions: How do various entropy models relate to each other? What insights can be obtained by considering diverse entropy models within a unified framework? What is the psychological plausibility of different entropy models? What new questions and insights for research on human information acquisition follow? Our work provides several new pathways for theoretical and empirical research, reconciling apparently conflicting approaches and empirical findings within a comprehensive and unified information‐theoretic formalism. (shrink)

This article is currently available as a free download on ingentaconnect.

The ideal of scientific openness — i.e. the idea that scientific information should be freely accessible to interested parties — is strongly supported throughout the scientific community. At the same time, however, this ideal does not appear to be absolute in the everyday practice of science. In order to get the credit for new scientific advances, scientists often keep information to themselves. Also, it is common practice to withhold information obtained in commissioned research when the scientist (...) has agreed with his or her employer to do so. The secrecy may be intended for ever, as in the military area, but also temporarily until a patent application has been made. The paper explores to what extent such secrecy is undesirable, as seems to be suggested by the ideal of scientific openness. Should this ideal be interpreted as having certain exceptions which make the above-mentioned practices acceptable? Are there, on closer inspection, good arguments for the ideal of scientific openness, and for officially upholding it? Possible versions of the ideal of scientific openness are explored and the issue is found to be rather complex, allowing for wide variations depending on the acting parties, beneficiaries, types of information and moral requirements involved. We conclude that the arguments usually given in favour of this ideal are weaker than what seems to be generally believed, and that, on closer inspection, they leave plenty of room for exceptions to it. These exceptions only partly cover the actual practice of withholding scientific information, and there may still be good reason to advocate, teach and enforce the ideal of scientific openness within the scientific community. (shrink)

Scientific data‐sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community‐informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of (...) open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice. (shrink)

Importance Informed consent is essential to ethical, rigorous research and is important to recruitment and retention in cancer trials.Objective To examine cancer clinical trial (CCT) participants’ perceptions of informed consent processes and variations in perceptions by cancer type.Design and Setting and Participants Cross-sectional survey from mixed-methods study at National Cancer Institute–designated Northeast comprehensive cancer center. Open-ended and forced-choice items addressed: (1) enrollment and informed consent experiences and (2) decision-making processes, including risk-benefit assessment. Eligibility: CCT participant with gastro-intestinal or genitourinary, hematologic-lymphatic (...) malignancies, lung cancer, and breast or gynecological cancer (N = 334).Main Outcome Measures Percentages satisfied with consent process and information provided; and assessing participation’s perceptions of risks/benefits. Multivariable logistic or ordinal regression examined differences by cancer type.Results Most patient-participants felt well informed by the consent process (more than 90% overall and by cancer type) and. most (87.4%) reported that the consent form provided all the information they wanted, although nearly half (44.8%) reported that they read the form somewhat carefully or less. More than half (57.9%) said that talking to research staff (i.e., the consent process) had a greater impact on participation decisions than reading the consent form (2.1%). A third (31.1%) were very sure of joining in research studies before the informed consent process (almost half of lung cancer patients did—47.1%). Most patients personally assessed the risks and benefits before consenting. However, trust in physicians played an important role in the decision to enroll in CCT.Conclusions and Relevance Cancer patients rely less on written features of the informed consent process than on information obtained from the research staff and their own physicians. Research should focus on information and communication strategies that support informed consent from referring physicians, researchers, and others to improve patient risk-benefit assessment and decision-making. (shrink)

Gaining information can be modelled as a narrowing of epistemic space . Intuitively, becoming informed that such-and-such is the case rules out certain scenarios or would-be possibilities. Chalmers’s account of epistemic space treats it as a space of a priori possibility and so has trouble in dealing with the information which we intuitively feel can be gained from logical inference. I propose a more inclusive notion of epistemic space, based on Priest’s notion of open worlds yet which contains (...) only those epistemic scenarios which are not obviously impossible. Whether something is obvious is not always a determinate matter and so the resulting picture is of an epistemic space with fuzzy boundaries. (shrink)

Openness is one of the most important principles in scientifi c inquiry, but there are many good reasons for maintaining secrecy in research, ranging from the desire to protect priority, credit, and intellectual property, to the need to safeguard the privacy of research participants or minimize threats to national or international security. This article examines the clash between openness and secrecy in science in light of some recent developments in information technology, business, and politics, and makes some (...) practical suggestions for resolving confl icts between openness and secrecy. (shrink)

In “Informed Consent: What Must be Disclosed and What Must be Understood?”, we reject a dogma at the heart of research ethics. We demonstrate that the constitutive claim...

Are principles of information processing necessary to demonstrate the consistency of statistical mechanics? Does the physical implementation of a computational operation have a fundamental thermodynamic cost, purely by virtue of its logical properties? These two questions lie at the centre of a large body of literature concerned with the Szilard engine (a variant of the Maxwell's demon thought experiment), Landauer's principle (supposed to embody the fundamental principle of the thermodynamics of computation) and possible connections between the two. A variety (...) of attempts to answer these questions have illustrated many open questions in the foundations of statistical mechanics. (shrink)

While positive information in the context of clinical care can lead to placebo effects, negatively framed information can have negative or nocebo effects. Extant literature documents how doctor–patient encounters are fertile ground for suboptimal interactions leading to negative experiences for ethnoracial minority patients. In their _JME_ paper, Blease presents a critical perspective on the potential for patients’ access to their doctors’ clinical notes, ‘open notes’, to engender nocebo effects. 1 In this commentary, we affirm the central claim that (...) nocebo effects could emerge ‘via negative wording or framing of health information expressed by clinicians in documentation’. The advent of electronic health records (EHR) allowed patients the unprecedented opportunity to access personal clinical documentation, giving them a window into decision making around their health. This shift is undoubtedly complex, and thus warrants a more fulsome rendering of the unique challenges faced by ethnoracial minority patients. Herein, we highlight three... (shrink)

Providing high quality and user oriented information about mammographic screening is no easy task, as screening has been subject to heated professional and public debates. Although the information has to be developed and provided in context for each screening program, the basic challenges are very much the same for all programs. Accordingly, the objective of this article is to analyze key ethical challenges in informing about mammographic screening, and based on these, to suggest some guiding principles for practical (...) solutions. A literature review identifies five crucial issues with respect to informing women about mammographic screening. By analyzing and addressing these issues, five guiding principles are suggested: the content and the form of information should be developed through open and transparent processes with strong stakeholder involvement. Facts should be presented in a balanced way and uncertainties should be acknowledged, e.g., by presenting outcomes in ranges. Information should be layered without attempts to frame information. Attending mammographic screening should be as easy as not attending. Although apparently trivial, the suggested principles can be useful for elaborating specific information material about mammographic screening in a field of great ethical controversy. (shrink)

I flesh out the sense in which the informational approach to interpreting quantum mechanics, as defended by Pitowsky and Bub and lately by a number of other authors, is (neo-)Bohrian. I argue that on this approach, quantum mechanics represents what Bohr called a “natural generalisation of the ordinary causal description” in the sense that the idea (which philosophers of science like Stein have argued for on the grounds of practical and epistemic necessity) that understanding a theory as a theory of (...) physics requires that one be able to “schematise the observer” within it is elevated in quantum mechanics to the level of a postulate in the sense that interpreting the outcome of a measurement interaction, as providing us with information about the world, requires as a matter of principle, the specification of a schematic representation of an observer in the form of a ‘Boolean frame’—the Boolean algebra representing the yes-or-no questions associated with a given observable representative of a given experimental context. I argue that the approach’s central concern is with the methodological question of how to assign physical properties to what one takes to be a system in a given experimental context, rather than the metaphysical question of what a given state vector represents independently of any context, and I show how the quantum generalisation of the concept of an open system may be used to assuage Einstein’s complaint that the orthodox approach to quantum mechanics runs afoul of the supposedly fundamental methodological requirement to the effect that one must always be able, according to Einstein, to treat spatially separated systems as isolated from one another. (shrink)

There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to the collection, storage, and re-use (...) of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. (shrink)

Originally published March 20, 2020. This version published December 30, 2020.