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)

We study the case of a Chinese industrial policy, implemented in Shanghai that makes it mandatory for car manufacturers to share electro-mechanical performance and real time navigation data from their entire fleet of electric and hybrid vehicles with local and central government authorities. This policy seeks to prevent fraud in state subsidies, reduce emissions, assess the performance of New Energy Vehicles and strengthen the competitiveness of Chinese manufacturers of these vehicles. We argue that economies of scope in data (...) aggregation may provide traditional market failure arguments in favor of government intervention and mandatory data pooling. Our paper illustrates how data access regimes could be used for economic competition. The EU and China pursue similar data sharing and pooling policy goals that hinge on economies of scope in data aggregation. However, they follow very different political processes to achieve these goals. (shrink)

This paper provides an account of the challenges and potentialities of a solidarity-based approach to data access and governance. To do that, it offers an infraethical understanding of solidarity that describes it as a structural moral enabler that can sustain collective action and risk taking. The paper ends with a brief discussion of health data access as a possible case study to test this approach.

BackgroundIt has been argued that ethics review committees—e.g., Research Ethics Committees, Institutional Review Boards, etc.— have weaknesses in reviewing big data and artificial intelligence research. For instance, they may, due to the novelty of the area, lack the relevant expertise for judging collective risks and benefits of such research, or they may exempt it from review in instances involving de-identified data.Main bodyFocusing on the example of medical research databases we highlight here ethical issues around de-identified data sharing (...) which motivate the need for review where oversight by ethics committees is weak. Though some argue for ethics committee reform to overcome these weaknesses, it is unclear whether or when that will happen. Hence, we argue that ethical review can be done by data access committees, since they have de facto purview of big data and artificial intelligence projects, relevant technical expertise and governance knowledge, and already take on some functions of ethical review. That said, like ethics committees, they may have functional weaknesses in their review capabilities. To strengthen that function, data access committees must think clearly about the kinds of ethical expertise, both professional and lay, that they draw upon to support their work.ConclusionData access committees can undertake ethical review of medical research databases provided they enhance that review function through professional and lay ethical expertise. (shrink)

In this paper we study the semantic data complexity of several controlled fragments of English designed for natural language front-ends to OWL (Web Ontology Language) and description logic ontology-based systems. Controlled languages are fragments of natural languages, obtained by restricting natural language syntax, vocabulary and semantics with the goal of eliminating ambiguity. Semantic complexity arises from the formal logic modelling of meaning in natural language and fragments thereof. It can be characterized as the computational complexity of the reasoning problems (...) associated to their semantic representations. Data complexity (the complexity of answering a question over an ontology, stated in terms of the data items stored therein), in particular, provides a measure of the scalability of controlled languages to ontologies, since tractable data complexity implies scalability of data access. We present maximal tractable controlled languages and minimal intractable controlled languages. (shrink)

Bioethics, Volume 35, Issue 8, Page 779-786, October 2021.

(2013). Open Access Digital Data Sharing: Principles, Policies and Practices☆. Social Epistemology: Vol. 27, No. 1, pp. 47-67. doi: 10.1080/02691728.2012.760663.

The presented article is devoted to the question of whether extended access therapy can or should be accompanied by research activity. It consists of three parts. The first lists the tasks that can be used for medical information regarding extended access programs, which leads to the conclusion that even taking into account the specific limitations of their cognitive value, this type of data can be meaningfully used. The second part is devoted to the limited regulations in European (...) law concerning the discussed issue, and the Polish Act on the Professions of Physician and Dentist which grants physicians/researchers broader powers. In the last part of the article, two arguments are presented to ethically justify the granting of such broad powers to researchers, and thus limiting the autonomy of patients. (shrink)

Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be (...) openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as mechanisms of control, are put under pressure. In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data diminish individual control, the synergistic effect of new data management models can in fact improve it. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data (...) from Digital Mental Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research in an ethical manner that includes vulnerable young people as research participants. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data (...) from Digital Mental Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research that includes vulnerable young people as research participants in an ethical manner. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

Though full of promise, Big Data research success is often contingent on access to the newest, most advanced, and often expensive hardware systems and the expertise needed to build and implement such systems. As a result, the accessibility of the growing number of Big Data-capable technology solutions has often been the preserve of business analytics. Pay as you store/process services like Amazon Web Services have opened up possibilities for smaller scale Big Data projects. There is high (...) demand for this type of research in the digital humanities and digital sociology, for example. However, scholars are increasingly finding themselves at a disadvantage as available data sets of interest continue to grow in size and complexity. Without a large amount of funding or the ability to form interdisciplinary partnerships, only a select few find themselves in the position to successfully engage Big Data. This article identifies several notable and popular Big Data technologies typically implemented using large and extremely powerful cloud-based systems and investigates the feasibility and utility of development of Big Data analytics systems implemented using low-cost commodity hardware in basic and easily maintainable configurations for use within academic social research. Through our investigation and experimental case study, we found that not only are solutions like Cloudera’s Hadoop feasible, but that they can also enable robust, deep, and fruitful research outcomes in a variety of use-case scenarios across the disciplines. (shrink)

Pharmaceutical companies can dramatically improve their understanding of how certain drugs work by having access to data from prospective research participants and those enrolled in clinical trials. Yet can data legitimately be used in ways that these individuals have not specifically authorized? In some cases it is ethically acceptable to share data with pharmaceutical companies even if there was no specific consent to do so by appealing to the principles of beneficence and respect for persons. These (...) principles require us to look not just at how well the process and documentation of consent conform to regulatory requirements, but also at how well they minimize harm and maximize benefit for research participants and future beneficiaries of the research. (shrink)

Since the adoption of the WTO-TRIPS Agreement in 1994, there has been significant controversy over the impact of pharmaceutical patent protection on the access to medicines in the developing world. In addition to the market exclusivity provided by patents, the pharmaceutical industry has also sought to further extend their monopolies by advocating the need for additional ‘regulatory’ protection for new medicines, known as data exclusivity. Data exclusivity limits the use of clinical trial data that need to (...) be submitted to the regulatory authorities before a new drug can enter the market. For a specified period, generic competitors cannot apply for regulatory approval for equivalent drugs relying on the originator's data. As a consequence, data exclusivity lengthens the monopoly for the original drug, impairing the availability of generic drugs. This article illustrates how the pharmaceutical industry has convinced the US and the EU to impose data exclusivity on their trade partners, many of them developing countries. The key arguments formulated by the pharmaceutical industry in favor of adopting data exclusivity and their underlying ethical assumptions are described in this article, analyzed, and found to be unconvincing. Contrary to industry's arguments, it is unlikely that data exclusivity will promote innovation, especially in developing countries. Moreover, the industry's appeal to a property rights claim over clinical test data and the idea that data exclusivity can prevent the generic competitors from ‘free-riding’ encounters some important problems: Neither legitimize excluding all others. (shrink)

If there is to be a natural theory of consciousness that would satisfy both philosophers and scientists, it must be based on naturalistic data and minimal clutter accumulated from semantic arguments. Carruthers offers a 'natural' theory of consciousness that is rather myopic. To explore the evolutionary basis of consciousness, a natural theory should include comparative psychological and neurological data that encompass nonlinguistic measures. Such an approach could provide a clearer picture of the adaptive function, mechanisms, and origins of (...) consciousness. (shrink)

Place is a key concept in environmental studies and criticism. However, it is often overlooked as a dimension of situatedness in social studies of information. Rather, situatedness has been defined primarily as embodiment or social context. This paper explores place attachments in Big Data by adapting close and distant approaches for reading texts to examine the accessions data of the Arnold Arboretum, a living collection of trees, vines and shrubs established by Harvard University in 1872. Although it is (...) an early and unconventional example of the phenomenon, there are several reasons that the Arboretum is a useful site for investigating the relationship between Big Data and place. First, the category of place is embedded in a range of data fields used in the Arboretum’s records. Second, the Arboretum has long sought to be a place in which scientists and citizens alike can encounter large collections of data firsthand. Third, the place has shaped fluctuations in the daily production of data over the course of the Arboretum’s 144 year history. Furthermore, Arboretum data can help us see place in ways not necessarily tied to geolocation. Each of these place attachments suggests a different way in which data can be environmental: by being about, in, from, or generative of place. Taken together, these attachments offer a model for examining other data in relation to their environments. Moreover, the paper contends that rather than being detached from place, as prevailing discourses suggest, Big Data bring together more and further reaching place attachments than data sets of smaller sizes. (shrink)

Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich (...) and detailed presentation of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data, ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: The role of HDSSs in research using public health data and data-sharing; Ownership and funding are critical factors influencing data-sharing; Other factors discourage data-sharing; Promoting and sustaining data-sharing; Ethical guidance structures; and Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching ‘share’ as a default. (shrink)

Starting from Marr's ideas about levels of explanation, a theory of the data structures and access processes in human memory is demonstrated on 10 tasks. Functional characteristics of human memory are captured implementation-independently. Our theory generates a multidimensional task classification subsuming existing classifications such as the distinction between tasks that are implicit versus explicit, data driven versus conceptually driven, and simple associative (two-way bindings) versus higher order (threeway bindings), providing a broad basis for new experiments. The formal (...) language clarifies the binding problem in episodic memory, the role of input pathways in both episodic and semantic (lexical) memory, the importance of the input set in episodic memory, and the ubiquitous calculation of an intersection in theories of episodic and lexical access. (shrink)

Whether due to simplicity or hypocrisy, the question of access to patient data for biomedical research is widely seen in the public discourse only from the angle of patient privacy. At the same time, the desire to live and to live without disability is of much higher value to the patients. This goal can only be achieved by extracting research insight from patient data in addition to working on model organisms, something that is well understood by many (...) patients. Yet, most biomedical researchers working outside of clinics and hospitals are denied access to patient records when, at the same time, clinicians who guard the patient data are not optimally prepared for the data’s analysis. Medical data collection is a time- and cost-intensive process that is most of all tedious, with few elements of intellectual and emotional satisfaction on its own. In this process, clinicians and bioinformaticians, each group with their own interests, have to join forces with the goal to generate medical data sets both from clinical trials and from routinely collected electronic health records that are, as much as possible, free from errors and obvious inconsistencies. The data cleansing effort as we have learned during curation of Singaporean clinical trial data is not a trivial task. The introduction of omics and sophisticated imaging modalities into clinical practice that are only partially interpreted in terms of diagnosis and therapy with today’s level of knowledge warrant the creation of clinical databases with full patient history. This opens up opportunities for re-analyses and cross-trial studies at future time points with more sophisticated analyses of the same data, the collection of which is very expensive. (shrink)

England and Wales are moving toward a model of ‘opt out’ for use of personal confidential data in health research. Existing research does not make clear how acceptable this move is to the public. While people are typically supportive of health research, when asked to describe the ideal level of control there is a marked lack of consensus over the preferred model of consent. This study sought to investigate a relatively unexplored difference between the consent model that people prefer (...) and that which they are willing to accept. It also sought to explore any reasons for such acceptance. (shrink)

Openness is one of science’s fundamental ethical norms, but it should not take precedence over the obligation to protect the confidentiality of data. Deidentifying the data obtained from human genomic research as a condition of providing open access to research data is a strategy to promote scientific openness while protecting research participants’ confidentiality interests. However, given recent advances in methods of reidentifying individuals whose deidentified data are in genomic databases, the best way to balance scientific (...) openness and protection of human subjects in genomic research is to permit access to genomic data on a restricted basis. (shrink)

Robert John Ackermann deals decisively with the problem of relativism that has plagued post-empiricist philosophy of science. Recognizing that theory and data are mediated by data domains (bordered data sets produced by scientific instruments), he argues that the use of instruments breaks the dependency of observation on theory and thus creates a reasoned basis for scientific objectivity. Originally published in 1985. The Princeton Legacy Library uses the latest print-on-demand technology to again make available previously out-of-print books from (...) the distinguished backlist of Princeton University Press. These editions preserve the original texts of these important books while presenting them in durable paperback and hardcover editions. The goal of the Princeton Legacy Library is to vastly increase access to the rich scholarly heritage found in the thousands of books published by Princeton University Press since its founding in 1905. (shrink)

The United Nations deemed internet access to be of critical importance for human rights in 2016. In 2020, schools around the world closed during the COVID-19 pandemic. As schools were closed, inequities in internet access gained widespread public attention as many educational opportunities shifted online. Amidst this shift, this paper analyzes an Ontario provincial announcement to provide 21,000 iPads and free data for young people, during the pandemic. The closure of schools in Ontario, Canada, meant that young (...) people and families who faced technological challenges, such as a lack of devices, stable and affordable internet connections, or sufficient data allowances, could experience barriers to their right to an education. This paper revisits a community informatics model of internet access, the Access Rainbow, to analyze attempts to operationalize the right to an education through technology in Ontario. In parallel to rights, however, the field of CI faces the ongoing presence of profit-oriented corporations within universal access efforts. This paper argues that socio-technical infrastructural elements of access to the internet became visible through the breakdown of the pandemic. Furthermore, it considers the multi-stakeholder efforts required to implement useful and effective access, where school boards responded in varied ways locally. The paper contributes the concept of refraction to offer continued theorization of a distributive paradigm and a rights-informed approach in community informatics against the backdrop of the pandemic, which could also act as an opening for privatization and disaster capitalism. (shrink)

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

ObjectivesTo determine to which degree industry partners in randomised clinical trials own the data and can constrain publication rights of academic investigators.MethodsCohort study of trial protocols, publication agreements and other documents obtained through Freedom of Information requests, for a sample of 42 trials with industry involvement approved by ethics committees in Denmark. The main outcome measures used were: proportion of trials where data was owned by the industry partner, where the investigators right to publish were constrained and if (...) this was mentioned in informed consent documents, and where the industry partner could review data while the trial was ongoing and stop the trial early.ResultsThe industry partner owned all data in 20 trials (48%) and in 16 trials (38%) it was unclear. Publication constraints were described for 30 trials (71%) and this was not communicated to trial participants in informed consent documents in any of the trials. In eight trials (19%) the industry partner could review data during the trial, for 20 trials (48%) it was unclear. The industry partner could stop the trial early without any specific reason in 23 trials (55%).ConclusionsPublication constraints are common, and data is often owned by industry partners. This is rarely communicated to trial participants. Such constraints might contribute to problems with selective outcome reporting. Patients should be fully informed about these aspects of trial conduct. (shrink)

About thirty years ago, when the Internet started to be commercialised, access to the medium became a topic of research and debate. Up-to-date evidence about key predictors, such as age, is crucial because of the Internet's ever-changing nature and the challenges associated with gaining access to it. This paper aims to give an overview of New Zealand's Internet access trends and how they relate to age. It is based on secondary analysis of data from a larger (...) online panel survey with 1,001 adult respondents. The Chi-square test of independence and Cramer's V were used in the analysis. The study provides new evidence to understand the digital divide. Specifically, it uncovers a growing disparity in the quality of Internet connectivity. Even though fibre is the most common type of broadband connection at home, older adults are less likely to have it and more likely to use wireless broadband, which is a slower connection type. Additionally, a sizable majority of people in all age categories have favourable opinions on the Internet. Interestingly, this was more prevalent among older people, although they report an increased concern about the security of their personal information online. The implications of the results are discussed and some directions for future research are proposed. (shrink)

ABSTRACTIn an era of neoliberal reforms, academics in UK universities have become increasingly enmeshed in audit. A new Teaching Excellent Framework emerged in 2017 with results determined pr...

The collection and dissemination of data on human and nonhuman organisms has become a central feature of 21st-century biology and has been endorsed by funding agencies in the United States and Europe as crucial to translating biological research into therapeutic and agricultural innovation. Large molecular data sets, often referred to as “big data,” are increasingly incorporated into digital databases, many of which are freely accessible online. These data have come to be seen as resources that play (...) a key role in mediating global market exchange, thus achieving a prominent social and economic status well beyond science itself. At the same time, calls to make all such data publicly and freely available have garnered strength and visibility, most prominently in the form of the Open Data movement. I discuss these developments by considering the conditions under which data journey across the communities and institutions implicated in globalized biology and biomedicine, and what this indicates about how Internet-based communication and the use of online databases affect scientific research and its role within contemporary society. (shrink)

Immunology researchers are beginning to explore the possibilities of reproducibility, reuse and secondary analyses of immunology data. Open-access datasets are being applied in the validation of the methods used in the original studies, leveraging studies for meta-analysis, or generating new hypotheses. To promote these goals, the ImmPort data repository was created for the broader research community to explore the wide spectrum of clinical and basic research data and associated findings. The ImmPort ecosystem consists of four components–Private (...) Data, Shared Data, Data Analysis, and Resources—for data archiving, dissemination, analyses, and reuse. To date, more than 300 studies have been made freely available through the ImmPort Shared Data portal , which allows research data to be repurposed to accelerate the translation of new insights into discoveries. (shrink)

In this article, I discuss calls for access to empirical data within controversies about climate science, as revealed and highlighted by the publication of the e-mail correspondence involving scientists at the Climatic Research Unit at the University of East Anglia in 2009. I identify several arguments advanced for and against the sharing of scientific data. My conclusions are that, whereas transparency in science is to be valued, appeals to an unproblematic category of ‘empirical data’ in climate (...) science do not reflect the complexities of scientific practice in this field. (shrink)

This open access book explains how leading business organizations attempt to achieve the responsible and ethical use of artificial intelligence (AI) and other advanced information technologies. These technologies can produce tremendous insights and benefits. But they can also invade privacy, perpetuate bias, and otherwise injure people and society. To use these technologies successfully, organizations need to implement them responsibly and ethically. The question is: how to do this? Data ethics management, and this book, provide some answers. -/- The (...) authors interviewed and surveyed data ethics managers at leading companies. They asked why these experts see data ethics as important and how they seek to achieve it. This book conveys the results of that research on a concise, accessible way. -/- Much of the existing writing on data and AI ethics focuses either on macro-level ethical principles, or on micro-level product design and tooling. The interviews showed that companies need a third component: data ethics management. This third element consists of the management structures, processes, training and substantive benchmarks that companies use to operationalize their high-level ethical principles and to guide and hold accountable their developers. Data ethics management is the connective tissue makes ethical principles real. It is the focus of this book. -/- This book should be of use to organizations that wish to improve their own data ethics management efforts, legislators and policymakers who hope to build on existing management practices, scholars who study beyond compliance business behavior, and members of the public who want to understand better the threats that AI poses and how to reduce them. (shrink)

In their open peer commentary: “Making It Count: Extracting Real World Data from Compassionate Use and Expanded Access Programs”, Rozenberg and Greenbaum discuss impo...

How can we disentangle the neural basis of phenomenal consciousness from the neural machinery of the cognitive access that underlies reports of phenomenal consciousness? We can see the problem in stark form if we ask how we could tell whether representations inside a Fodorian module are phenomenally conscious. The methodology would seem straightforward: find the neural natural kinds that are the basis of phenomenal consciousness in clear cases when subjects are completely confident and we have no reason to doubt (...) their authority, and look to see whether those neural natural kinds exist within Fodorian modules. But a puzzle arises: do we include the machinery underlying reportability within the neural natural kinds of the clear cases? If the answer is ‘Yes’, then there can be no phenomenally conscious representations in Fodorian modules. But how can we know if the answer is ‘Yes’? The suggested methodology requires an answer to the question it was supposed to answer! The paper argues for an abstract solution to the problem and exhibits a source of empirical data that is relevant, data that show that in a certain sense phenomenal consciousness overflows cognitive accessibility. The paper argues that we can find a neural realizer of this overflow if assume that the neural basis of phenomenal consciousness does not include the neural basis of cognitive accessibility and that this assumption is justified by the explanations it allows. (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.

Volume 20, Issue 7, July 2020, Page 89-92.

The American Journal of Bioethics, Volume 11, Issue 11, Page 31-38, November 2011.

This paper conducts a comparative analysis of data governance mechanisms concerning the secondary use of health data in Taiwan and the European Union (EU). Both regions have adopted distinctive approaches and regulations for utilizing health data beyond primary care, encompassing areas such as medical research and healthcare system enhancement. Through an examination of these models, this study seeks to elucidate the strategies, frameworks, and legal structures employed by Taiwan and the EU to strike a delicate balance between (...) the imperative of data-driven healthcare innovation and the safeguarding of individual privacy rights. This paper examines and compares several key aspects of the secondary use of health data in Taiwan and the EU. These aspects include data governance frameworks, legal and regulatory frameworks, data access and sharing mechanisms, and privacy and security considerations. This comparative exploration offers invaluable insights into the evolving global landscape of health data governance. It provides a deeper understanding of the strategies implemented by these regions to harness the potential of health data while upholding the ethical and legal considerations surrounding its secondary use. The findings aim to inform best practices for responsible and effective health data utilization, particularly in the context of medical AI applications. (shrink)