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.

As a profession, librarians have proclaimed an ethical duty to ensure access to information for all people. However, many barriers exist to fulfilling this duty, including varying levels of education and technology around the globe, the cost of obtaining research information, and the concentration of scholarly publishing in English. This article outlines these barriers, concluding with a call to action for librarians to advocate for multilingual Open Access, to foster international scholarly communities, and to champion Internet (...) access for all. (shrink)

Unresolved disagreements on issues of access, censorship, and privacy within the information profession can be dangerous when entrepreneurial interests outweigh the public good and as corporations anticipate financial gain from placing limitations on information retrieval and use. The information profession can benefit from a grounding of its core values in a robust moral framework that can coherently place demands on interested parties. We argue that grounding the core values of privacy and ubiquitous access to (...) class='Hi'>information in a needs-based theory of rights is most suitable within the unique context of the information profession. (shrink)

Recently adopted international texts have given a new focus on conflicts of interests and access to information resulting from biomedical research. They confirmed ethical review committees as a central point to guarantee individual rights and the effective application of ethical principles. Therefore specific attention should be paid in giving such committees all the facilities necessary to keep them independent and qualified.

In two experiments and two different research paradigms, we tested the hypothesis that Zen meditation increases access to accessible but unconscious information. Zen practitioners who meditated in the lab performed better on the Remote Associate Test than Zen practitioners who did not meditate. In a new, second task, it was observed that Zen practitioners who meditated used subliminally primed words more than Zen practitioners who did not meditate. Practical and theoretical implications are discussed.

In Spring 2008 I went textbook-free. I linked all and only the readings for my Contemporary Analytic Philosophy course to the class website, along with powerpoints, handouts and external links to online resources.

Recently adopted international texts have given a new focus on conflicts of interests and access to information resulting from biomedical research. They confirmed ethical review committees as a central point to guarantee individual rights and the effective application of ethical principles. Therefore specific attention should be paid in giving such committees all the facilities necessary to keep them independent and qualified.

Background The convergence of neuroscience, genomics, and data science holds promise to unveil the neurobiology of psychosis and to produce new ways of preventing, diagnosing, and treating psychotic illness. Yet, moral challenges arise in neurobiological research and in the clinical translation of research findings. This article investigates the views of relevant actors in mental health on the moral challenges of accessing neurobiological information in the context of psychosis. Methods Semi-structured individual interviews with two groups: researchers employed in the National (...) Health Service (NHS) or a university in England (n = 14), and mental health professionals employed in NHS mental health services (n = 14). This article compares results in the two groups (total n = 28). Results This article presents findings around three conceptual areas: (1) research ethics as mostly unproblematic, (2) psychosis, neurobiological information, and mental health care, and (3) identity, relationships, and the future. These areas are drawn from the themes and topics that emerged in the interviews across the two groups of participants. Researchers and health professionals provided similar accounts of the moral challenges of accessing—which includes acquisition, communication, and use of—neurobiological information in the context of psychosis. Acquiring neurobiological information was perceived as mostly unproblematic, provided ethical safeguards are put in place. Conversely, participants argued that substantive moral challenges arise from how neurobiological information is delivered—that is, communicated and used—in research and in clinical care. Neurobiological information was seen as a powerful tool in the process through which individuals define their identity and establish personal and clinical goals. The pervasiveness of this narrative tool may influence researchers and health professionals’ perception of ethical principles and moral obligations. Conclusions This study suggests that the moral challenges that arise from accessing neurobiological information in the context of psychosis go beyond traditional research and clinical ethics concerns. Reflecting on how accessing neurobiological information can influence individual self-narratives will be vital to ensure the ethical translation of neuroscience and genomics into mental health. Trial registration The study did not involve a health care intervention on human participants. It was retrospectively registered on 11 July 2018, registration number: researchregistry4255. (shrink)

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)

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)

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)

An issue about the privacy of the clustered groups designed by algorithms arises when attempts are made to access certain pieces of information about those groups that would likely be used to harm them. Therefore, limitations must be imposed regarding accessing such information about clustered groups. In the discourse on group privacy, it is argued that the right to privacy of such groups should be recognised to respect group privacy, protecting clustered groups against discrimination. According to this (...) viewpoint, this right places a duty on others, for example, private companies, institutions, and governments, to refrain from accessing such information. To defend the idea that the right to privacy should be recognised for clustered groups, at least two requirements must be satisfied. First, clustered group privacy must be conceived of as either a collective good or a participatory good. Since these forms of good are of the type from which no member of a group can be excluded from benefiting, the right to them is defined as a group right. Second, there must be group interests on which to base a group right. Group interests can be either the interests of those members that are a result of their being in the group or the interests of the group as a whole that transcend the interests of its members. However, this paper argues that clustered group privacy cannot be conceived of as either a collective or a participatory good because it is possible for some individuals to be excluded from benefiting from it. Furthermore, due to the lack of awareness among individuals that they are members of a clustered group and the nature of a clustered group itself, such groups cannot have the group interests necessary to establish a group right. Hence, the group right to privacy cannot be recognised for these groups, implying that the group right cannot be considered a means to protect clustered groups against discrimination. Instead, this paper suggests that moral principles need to be articulated within an ethics of vulnerability to identify the moral obligations of protecting vulnerable clustered groups. The duty owed to the vulnerable should involve refraining from accessing certain information about clustered groups in specific contexts. This duty is not engendered by the right to privacy of such groups; it is the duty owed to the vulnerable. The findings highlight the need to articulate moral principles regarding privacy and data protection to protect clustered groups in contexts in which accessing information about them could constitute a reason for discriminatory targeting. (shrink)

Conscious access to fear-relevant information is mediated by threshold The present report proposed a model of access consciousness to fear-relevant information according to which there is a threshold for emotional perception beyond that the subject makes hits with no false alarm. The model was examined by having the participants performed a confidence-ratings masking task with fearful faces. Measures of the thresholds for conscious access were taken by looking at the receiver operating characteristics curves generated from (...) a three-state low- and high-threshold model by Krantz. Indeed, the analysis of the masking data revealed that the ROCs had threshold-like-nature rather continuous challenging in this fashion the classical signal-detection view on perceptual processing. Moreover, the threshold ROC curve exhibited the specific y-intercepts relevant to conscious access performance. The study suggests that the threshold can be an intrinsic property of conscious access, mediating emotional contents between perceptual states and consciousness. (shrink)

The use of compulsion and restrictive interventions in mental health care has been linked to social factors including poverty and marginalization. Using an intersectionality-informed analysis of key Victorian mental health policy documents released over the past decade, we identified a consistent lack of attention to the role played by race, socioeconomic status, and other forms of marginalization in the increased likelihood of compulsory treatment. Although policymakers have strived to consider the role of social determinants in catalyzing or mitigating mental distress, (...) this social framework is often displaced by a consistently dominant biomedical approach to mental illness, which emphasizes identifying diagnoses and providing clinical treatment. This paper critically examines the stated intentions of mental health policy in Victoria, Australia, and the recent recommendations of the Royal Commission into Victoria's mental health system. We found that policies and recommendations for reform tend to express an intention to decrease the use of compulsion and restrictive interventions. However, the assumption expressed in reforms is that compulsory treatment is the result of systematic failure to provide treatment through other less intrusive avenues, thus neglecting deliberate discussion and action on the intersecting social factors that directly contribute to compulsory treatment. (shrink)

Advances in technology are bringing greater insight into the mind, raising a host of privacy concerns. However, the basic psychological mechanisms underlying the perception of privacy violations are poorly understood. Here, we explore the relation between the perception of privacy violations and access to information related to one’s “self.” In two studies using demographically diverse samples, we find that privacy violations resulting from various monitoring technologies are mediated by the extent to which the monitoring is thought to provide (...) access to self-relevant information, and generally neuromonitoring did not rate among the more invasive monitoring types. However, brain monitoring was judged to be more of a privacy violation when described as providing access to self-relevant information than when no such access was possible, and control participants did not judge the invasiveness of neuromonitoring any differently than those told it provided no access to self-relevant information. (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)

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.

TheJournal of Medical Ethicspreviously published on the debate in the UK and the Netherlands concerning the legal age limits imposed on donor-conceived people for access to information about the identity of gamete and embryo donors. In that publication, three arguments were foregrounded against lowering these age limits as a general rule for all donor-conceived people. In this contribution, we engage with these arguments and argue why we think they are insufficient to maintain the age limits. In contrast, we (...) argue for a more suited, contextual and relational ethical framework based on care ethics, which emphasises relational autonomy and its dynamic, contextual development. This framework, we argue, provides a comprehensive approach for the analysis we made of the question of age limits and was applied in research performed in the Netherlands, commissioned by the Dutch Minister of Health. The framework enabled us to weigh the multidisciplinary—legal, psychological, phenomenological and ethical—findings of our research. (shrink)

The development of new methods in the field of prenatal testing leads to an expansion of information that needs to be provided to expectant mothers. The aim of this research is to explore opinions and attitudes of gynecologists in Germany, Poland and Russia towards access to prenatal testing and diagnostics in these countries. Semi-structured interviews were conducted with n = 18 gynecologists in Germany, Poland and Russia. The interviews were analyzed using the methods of content analysis and thematic (...) analysis. Visible in all three countries is a connection of prenatal medicine with the politically and socially contentious issue of pregnancy termination. Respondents in Poland and Russia concentrated on the topic of inadequate resources. Quality of information for expectant mothers is an important point in all three countries. Only in Germany was the issue of language barriers in communication raised. With regard to non-invasive prenatal testing (NIPT) respondents in Germany focused on the ethical issues of routinization of testing; in Poland and Russia they concentrated on fair access to NIPT. Challenges in all three countries arise from structural factors such as imprecise and prohibitive regulations, lack of resources or organization of healthcare services. These should be addressed on a political and medico-ethical level. (shrink)

Many countries have imposed strict regulations on the genetic information to which insurers have access. Commentators have warned against the emerging body of legislation for different reasons. This paper demonstrates that, when confronted with the argument that genetic information should be available to insurers for health insurance underwriting purposes, one should avoid appeals to rights of genetic privacy and genetic ignorance. The principle of equality of opportunity may nevertheless warrant restrictions. A choice-based account of this principle implies (...) that it is unfair to hold people responsible for the consequences of the genetic lottery, since we have no choice in selecting our genotype or the expression of it. However appealing, this view does not take us all the way to an adequate justification of inaccessibility of genetic information. A contractarian account, suggesting that health is a condition of opportunity and that healthcare is an essential good, seems more promising. I conclude that if or when predictive medical tests (such as genetic tests) are developed with significant actuarial value, individuals have less reason to accept as fair institutions that limit access to healthcare on the grounds of risk status. Given the assumption that a division of risk pools in accordance with a rough estimate of people's level of (genetic) risk will occur, fairness and justice favour universal health insurance based on solidarity. (shrink)

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)

During a prostate exam, Mr. Watson, age 65, learns that his prostate appears to be abnormal. The family physician conducting the exam, Dr. Kleinman, informs Mr. Watson that he may have prostate cancer. Mr. Watson agrees to a variety of tests, including blood tests, bone scans, ultrasound scanning, and a biopsy. After learning about this possible diagnosis and these tests, Mr. Watson surfs the Web for information about prostate cancer and gathers data from many different sources, including the National (...) Cancer Society, the National Institutes of Health, Johns Hopkins University, the Mayo Clinic, and medicine sites. He also searches for information from medical journals using MEDLINE, visits several chat rooms on prostate cancer, and joins some e-mail lists. He arrives in Dr. Kleinman's office for a follow-up appointment with a stack of material and many questions. Dr. Kleinman is surprised, irritated, and offended. He recommends that Mr. Watson have a prostatectomy followed by radiation, but Mr. Watson does not want this operation. He would rather receive a form of radiation therapy recently approved by the FDA that he learned about through his own research. Dr. Kleinman admits that he does not know much about this new treatment, but he says that he would read up on it and consult an oncologist. (shrink)

This article explores the ethics of access in relation to globalization, feminism and information society. It argues that the virtual settings of information and communication technologies (ICTs) are beginning to place significant emphasis on sociospatial as well as geospatial understandings of the world and the interactions that take place within it. The article examines the extreme material and other associated inequalities of contemporary globalization, and the concentration of technological development and power in the rich economies. Historical developments (...) related to these factors are discussed, including the gendered nature of technologies and social processes shaping their production, application and use. It is argued that feminist theory and practice is relevant to broad debates about inequality of access in the information age, as well as to those concentrating specifically on gender and women. The tension between liberal/neoliberal focus on 'equality' and the 'grotesque' levels of contemporary inequality is raised. It is argued that feminism's long-standing and extensive critique of the problematic masculinist and partial nature of liberal/neoliberal theory, and its framing of agency, offers a major contribution in addressing this. Cyberfeminism works in theory and practice on horizontal networks and consciousness-raising about their potential, arguing that the era of the cybercitizen raises new and important risks of marginalization, on the basis of gender and other factors, and new forms of empowerment. (shrink)

Aims and objectives. Participant narratives from a feminist and queer phe- nomenological study aim to broaden current understandings of trauma. Examin- ing structural marginalisation within perinatal care relationships provides insights into the impact of dominant models of care on queer birthing women. More specifically, validation of queer experience as a key finding from the study offers trauma-informed strategies that reconstruct formerly disempowering perinatal relationships. Background. Heteronormativity governs birthing spaces and presents considerable challenges for queer birthing women who may also have (...) an increased risk of trauma due to structurally marginalising processes that create and maintain socially constructed differences. Design. Analysis of the qualitative data was guided by feminist and queer phe- nomenology. This was well suited to understanding queer women’s storied narra- tives of trauma, including disempowering processes of structural marginalisation. Methods. Semistructured and conversational interviews were conducted with a purposeful sample of thirteen queer-identified women who had experiences of birthing in rural Nova Scotia, Canada. Results. Validation was identified as meaningful for queer women in the context of perinatal care in rural Nova Scotia. Offering new perspectives on traditional models of assessment provide strategies to create a context of care that recon- structs the birthing space insofar as women at risk do not have to come out as queer in opposition to the expectation of heterosexuality. Conclusions. Normative practices were found to further the effects of structural marginalisation suggesting that perinatal care providers, including nurses, can challenge dominant models of care and reconstruct the relationality between queer women and formerly disempowering expectations of heteronormativity that govern birthing spaces. Relevance to clinical practice. New trauma-informed assessment strategies recon- struct the relationality within historically disempowering perinatal relationships through potentiating difference which avoids retraumatising women with re- experiencing the process of coming out as queer in opposition to the expectation of heterosexuality. (shrink)

In order to predict and explain behavior, one cannot specify the mental state of an agent merely by saying what information she possesses. Instead one must specify what information is available to an agent relative to various purposes. Specifying mental states in this way allows us to accommodate cases of imperfect recall, cognitive accomplishments involved in logical deduction, the mental states of confused or fragmented subjects, and the difference between propositional knowledge and know-how .

In India, more than ninety percent of the workforce is informal. In spite of this enormous percentage of informal workers, these workers remain invisible to law and policy circles. One of the reasons for such exclusion and invisibility is the absence of unionism involving informal workers. In order to overcome this invisibility, informal workers are increasingly organizing into associations that are different from traditional trade unions. These organizations devise their strategies and their legal statuses in view of the atypical characteristics (...) of informal activities. In this Article, I document some of these organizations of self-employed informal workers in India – their characteristics and functions. On this basis, I contend that these organizations offer a model for collective action by informal workers. I argue that these associations are a sui generis organization of informal workers, and could become a precursor to solidarity-based collective initiatives by informal workers globally. In the backdrop to this proposition, I analyze the role of law in promoting such aggregation of informal workers in furtherance of their collective action. I argue that while organizations of informal workers in India employ the existing legal framework to the best of their advantage, the law fails to recognize some of their status as workers, thereby creating hurdles towards informal workers’ collective action. A small farmer works on her own farm. In tough times, she also works on other farms as a laborer. When the agriculture season is over, she goes to the forest to collect gum and other forest produce. Year round, she produces embroidered items either at a piece rate for a contractor or for sale to a trader who comes to her village to buy goods. Now, how should her trade be categorized? Does she belong to the agricultural sector, the factory sector, or the home-based work sector? Should she be categorized as a farmer or a farm worker? Is she self-employed or is she a piece-rate worker? Because her situation cannot be defined and contained neatly in a box, she has no work status and her right to representation in a union is unrealized. She is denied access to financial services or training to upgrade her skills. The tyranny of having to belong to a well-defined “category” has condemned her to having no “identity.” — Ela R. BhattEla R. Bhatt, We Are Poor but So Many: The Story of Self-Employed Women in India 17. (shrink)

This paper summarizes three lines of research that are motivated by the practical problem of helping users find information from external data sources, most notably computers. The application areas include information retrieval, text categorization, and question answering. A common theme in these applications is that practical information access problems can be solved by analyzing the statistical properties of words in large volumes of real world texts. The same statistical properties constrain human performance, thus we believe that (...) solutions to practical information access problems can shed light on human knowledge representation and reasoning. (shrink)

Down syndrome (Trisomy 21) is a mild to moderate intellectual disability. Historically, this condition has been a primary target for prenatal testing. However, Down syndrome has not been targeted for prenatal testing because it is an especially severe illness. The condition was just one that could be easily identified prenatally using the techniques first available decades ago. We are moving into an era in which we can prenatally test for a vast range of human traits. I argue that when we (...) can test for anything, there is no longer any reason to continue targeting Down syndrome. I present an argument based on the value of nondiscrimination. It is justified to set limits on access to prenatal information if the information is going to be used for discriminatory purposes. I use the examples of (1) prenatal testing for misogynistic fetal sex selection, and (2) homophobia-motivated prenatal testing for potential homosexuality, as compelling analogies. (shrink)

PurposeThe purpose of this paper is to study the evolution of Freedom of Information/Right to Information from an international perspective and analyse it as an indispensable tool for good governance through the use of information and communication technologies with special reference to India.Design/methodology/approachThis study examines the worldwide occurrence of Right to Information with reference to International Covenants, the genesis of RTI Act in India and the use of ICT in India as a tool for empowering the (...) citizen's.FindingsThe study demonstrates that RTI has far reaching impact and it clearly contributes to a better and informed citizenry however the use of ICT in India can further facilitate the access of such records.Research limitations/implicationsThe study focuses on the genesis of RTI from an international perspective but the use of ICT for further facilitating the use of RTI is limited to Indian context.Practical implicationsThe paper will outline a detailed analysis on the present usage of ICT and the initiatives taken for facilitating information dissemination and further provide suggestions for the benefit of civil society towards good governance.Originality/valueThe study is the first to address the issue of the implementation of right to information act through the use of ICT and also suggests methodology for its further improvement. Also, the study comprehends the genesis of RTI both from the international as well as Indian perspective. (shrink)

The background of this paper is the ongoing dismantling of the social insurance systems in favour of commercialisation and privatisation of insurances needed for illness, old age and premature death. This combined with the increased possibility of using genetic testing for differentiating personal insurance premiums has the potentiality of creating a ‘genetic proletariat’ — an uninsurable high-risk population. The common way of handling this problem in Sweden, and many other developed countries around the North Atlantic, has been to regulate insurance (...) companies’ right to ask for and use genetic information in various ways. There is a distinction between partial regulation (that allows insurance companies access to genetic information from genetic tests already made, sometimes only above a specified amount, but not to demand new tests) and total regulation (that forbids insurance companies to ask for or use any genetic information). I will argue that these forms of regulation probably will have adverse consequences given the dismantling of collective social insurance systems. If this is convincing, a better way to solve the problem of an uninsurable high-risk population (and other problems) is to resurrect the collective, obligatory insurance systems in which the individual risk profile does not constitute a basis for premium determination. Both arguments cast in terms of consequences and justice render support for this conclusion. (shrink)

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

Current evolutionary and cognitive theories of religion posit that supernatural agent concepts emerge from cognitive systems such as theory of mind and social cognition. Some argue that these concepts evolved to maintain social order by minimizing antisocial behavior. If these theories are correct, then people should process information about supernatural agents’ socially strategic knowledge more quickly than non-strategic knowledge. Furthermore, agents’ knowledge of immoral and uncooperative social behaviors should be especially accessible to people. To examine these hypotheses, we measured (...) response-times to questions about the knowledge attributed to four different agents—God, Santa Claus, a fictional surveillance government, and omniscient but non-interfering aliens—that vary in their omniscience, moral concern, ability to punish, and how supernatural they are. As anticipated, participants respond more quickly to questions about agents’ socially strategic knowledge than non-strategic knowledge, but only when agents are able to punish. (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 this chapter, it is suggested that our epistemic access to metaphysical modality generally involves rationalist, a priori elements. However, these a priori elements are much more subtle than ‘traditional’ modal rationalism assumes. In fact, some might even question the ‘apriority’ of these elements, but I should stress that I consider a priori and a posteriori elements especially in our modal inquiry to be so deeply intertwined that it is not easy to tell them apart. Supposed metaphysically necessary identity (...) statements involving natural kind terms are a good example: the fact that empirical input is crucial in establishing their necessity has clouded the role and content of the a priori input, as I have previously argued. For instance, the supposed metaphysically necessary identity statement involving water and its microstructure can only be established with the help of a controversial a priori principle concerning the determination of chemical properties by microstructure. The Kripke-Putnam framework of modal epistemology fails precisely because it is unclear whether the required a priori element is present. My positive proposal builds on E. J. Lowe’s work. Lowe holds that our knowledge of metaphysical modality is based on our knowledge of essence. Lowe’s account strives to offer a uniform picture of modal epistemology: essence is the basis of all our modal knowledge. This is the basis of Lowe’s modal rationalism. I believe that Lowe’s proposal is on the right lines in the case of abstract objects, but I doubt that it can be successfully applied to the case of natural kinds. Accordingly, the case of natural kinds will be my main focus and I will suggest that modal rationalism, at least as it is traditionally understood, falls short of explaining modal knowledge concerning natural kinds. Yet, I think that Lowe has identified something of crucial importance for modal epistemology, namely the essentialist, a priori elements present in our modal inquiry. The upshot is that rather than moving all the way from modal rationalism to modal empiricism, a type of hybrid approach, ‘empirically-informed modal rationalism ’, can be developed. (shrink)

Objective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK. Design: Qualitative study using focus groups (10) and interviews (13). Setting: England and Northern Ireland. Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals. Results: People with MS expressed open and altruistic views towards the use of their (...) personal information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant’s proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register. Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided. (shrink)

Can heroin addicts give consent to research on trials in which heroin is prescribed to them? Analyses of addicts and informed consent have been objects of debate in several articles. Informed consent requires the agent not only to be competent but also to give consent voluntarily. This has been questioned because of alleged features of heroin addiction. Until recently the discussion has focused on heroin addicts' desires for heroin, whether these are irresistible and thus pose a problem for giving consent. (...) Still, in light of empirical evidence, there seems to be a consensus more or less that the problem is not whether the addicts can resist their desire for heroin. A recent article concentrates specifically on heroin addicts' false assumptions of options and voluntariness. We argue that the prevailing framing of the options in this discussion in terms of heroin and access to it is problematic. The way in which the options are typically laid out suggests an assumption that participation in the research is allegedly based on the addicts' views on using the drug. We argue that this way of presenting the options is, first, a mismatch to the studies carried out and, second, symptomatic of potential misconceptions about heroin addiction and addicts. Furthermore, we also suggest that the account of voluntariness needs to be realistic in order for subjects to be able to give consent voluntarily in actual situations, and for medical research to carry out studies on improving outcomes in addiction treatment in an ethical way. (shrink)