For several decades now, biologists have been developing digital databanks, which are remarkable scientific instruments allowing scientists to accelerate the development of biological knowledge. From the beginnings of the Human Genome Project (HGP) onwards, genetic databanks have been a major component of current biological knowledge, and biodiversity databanks have also been developed in the wake of the HGP. The purpose of this paper is to identify the specific features of biodiversity data and databanks, and to point out their contribution to (...) biodiversity knowledge. (shrink)

Background Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material. Discussion In this paper, we discuss the (...) difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research. Summary The authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required. (shrink)

Gebhardt in his brief report1 pleads for patient organisations to establish databanks on medical complications. Given the references and the lack of argumentation, there is substantial danger of misinterpretation of the current situation, which in turn may frustrate the process of increased transparency. We would therefore like to respond to this by giving background information and reasons for some of the choices that were made with respect to the registry of complications mentioned by Gebhardt.First, a distinction needs to be made (...) between an error and an adverse outcome, which are often confused. From Gebhardt’s reference to the journalist’s article which discusses the same registry of adverse outcomes, but with the title referring to errors, both Gebhardt and the journalist think errors and adverse outcomes are the same thing. However, an error refers to the process in which something has gone wrong, a substandard performance, regardless of the outcome. It has been explained by others that such a judgement may have a degree of subjectivity.2 An adverse outcome refers to the outcome which is unwanted but does not necessarily imply that an error has been made. This is why the term “adverse outcomes” is used rather than …. (shrink)

New media can change the way that artifacts are constructed and used. Changes in these artifacts, in turn, will be reflected in work practices and processes. This article draws on an empirical investigation of the impact of computer-based technologies on classical scholarship to discuss some of the ramifications that a switch in medium may have for work. The article defines both traditional and computer-based tools as "packages" that consist of artifacts, skill sets, data, beliefs about the work process, and organizational (...) infrastructures, and applies the package metaphor to understand the multiple levels of changes taking place within classics as the use of textual databanks becomes more prevalent. (shrink)

Organized into three main parts, this paper examines some challenges for the informed-consent process in medical research where DNA databanks are employed. In Part 1, we briefly describe the principle of informed consent and show why it is ethically important. Part 2 focuses on some specific challenges that that arise for the traditional informed-consent process in population-wide genetics/genomics research, especially where data-mining techniques are used. In the third and final section, we defend a model of consent based on the notion (...) of a "charitable trust," which we believe can help to preserve the integrity of the consent process in the context of medical and genetic research involving DNA databanks. (shrink)

In 1998 a lawyer working for the Dutch consumer organisation, Consumentenbond, suggested that hospitals, like hotels, should be classified according to the quality of service they provide.1 For the establishment of such a register it would of course be necessary to determine various parameters, including the incidence of complications occurring in each hospital. It did not take long before this proposal was rejected by van Herk2 on the grounds that it would promote defensive medicine, which would not improve the ….

This paper argues that specific individual informed consent and other forms of consent predicated on a right to autonomy may not in all circumstances be appropriate for the establishment and use of large data sets of health information. We suggest that there are inherent failings in such an approach, shortcomings that we analyse below. We argue that individuals share an obligation to contribute their data, as doing so is cost-free and benefits accrue to the population as a whole. Large health (...) data sets can be considered public goods – goods that are non-rival in consumption and in some cases non-exclusive in use – and contributing to these goods may be an obligation, the meeting of which allows citizens to invest in knowledge infrastructure. The approach argued for here is a variation of a communitarian ethic in which people have an obligation to contribute their data but have no correlative right to expect or receive an individual benefit. (shrink)

Over ten years have elapsed since Virginia passed the nation's first criminal DNA banking law, which authorized law enforcement authorities to collect DNA samples from certain categories of offenders for the purposes of performing profile analysis. Within nine years, Rhode Island became the fiftieth state to enact a similar statute. The passage of a decade since the first enactment provides a convenient opportunity to assess the strengths and weaknesses of ethical safeguards under present law as well as predict the likely (...) direction of future developments.DNA forensics are merely the latest in a long line of biologically based identifying law enforcement technologies that include fingerprints and serotyping. Nevertheless, DNA has properties that make it significantly different than its predecessors with respect to the ethical and social concerns it raises. (shrink)

Over ten years have elapsed since Virginia passed the nation's first criminal DNA banking law, which authorized law enforcement authorities to collect DNA samples from certain categories of offenders for the purposes of performing profile analysis. Within nine years, Rhode Island became the fiftieth state to enact a similar statute. The passage of a decade since the first enactment provides a convenient opportunity to assess the strengths and weaknesses of ethical safeguards under present law as well as predict the likely (...) direction of future developments.DNA forensics are merely the latest in a long line of biologically based identifying law enforcement technologies that include fingerprints and serotyping. Nevertheless, DNA has properties that make it significantly different than its predecessors with respect to the ethical and social concerns it raises. (shrink)

Technology has provided state and federal governments with huge collections of DNA samples and identifying profiles stored in databanks. That information can be used to solve crimes by matching samples from convicted felons to unsolved crimes, and has aided law enforcement in investigating and convicting suspects, and exonerating innocent felons, even after lengthy incarceration. Rights surrounding the provision of DNA samples, however, remain unclear in light of the constitutional guarantee against unreasonable searches and seizures and privacy concerns. The courts have (...) just begun to consider this issue, and have provided little guidance. It is unclear whether the laws governing protected health information are applicable to the instant situation, and if so, the degree to which they apply. DNA databanks are not uniformly regulated, and it is possible that DNA samples contained in them may be used for purposes unintended by donors of the samples. As people live their lives, they leave bits of their DNA behind. They cannot be assured that these tiny specimens will not be taken or used against their will or without their knowledge for activities such as profiling to measure tendencies such as thrill-seeking, aggressiveness, or crimes with threatening behavior. Existing racial or ethnic discrimination and profiling may also encompass genetic discrimination and profiling, creating societal class distinctions. This article will explore the constitutionality of collecting genetic materials, the ethics of such activities, and balance the social good in solving crime and deterrence against the individual's security, liberty, and privacy. (shrink)

A foreign juridicial databank inquiry gives to difficulties not only with the linguistic problem of the translation but also with the comparison of the different law systems. So, it’s necessary to create a device able to resolve the collation of different juridicial systems specially when the files data retrieval is realised by a foreign user. These interfaces use specific connexion which allow an efficient documentary research and protect the integrity and the specificity of each national law systems.

Integrative and naturalistic philosophy of mind can both learn from and contribute to the contemporary cognitive sciences of dreaming. Two related phenomena concerning self-representation in dreams demonstrate the need to bring disparate fields together. In most dreams, the protagonist or dream self who experiences and actively participates in dream events is or represents the dreamer: but in an intriguing minority of cases, self-representation in dreams is displaced, disrupted, or even absent. Working from dream reports in established databanks, we examine two (...) key forms of polymorphism of self-representation: dreams in which I take an external visuospatial perspective on myself, and those in which I take someone else's perspective on events. In remembering my past experiences or imagining future or possible experiences when awake, I sometimes see myself from an external or 'observer' perspective. By relating the issue of perspective in dreams to established research traditions in the study of memory and imagery, and noting the flexibility of perspective in dreams, we identify new lines of enquiry. In other dreams, the dreamer does not appear to figure at all, and the first person perspective on dream events is occupied by someone else, some other person or character. We call these puzzling cases 'vicarious dreams' and assess some potential ways to make sense of them. Questions about self-representation and perspectives in dreams are intriguing in their own right and pose empirical and conceptual problems about the nature of self-representation with implications beyond the case of dreaming. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology of biobank, database, genetic, and (...) epidemiological research. (shrink)

This open access book examines the many contributions of Paul Lorenzen, an outstanding philosopher from the latter half of the 20th century. It features papers focused on integrating Lorenzen's original approach into the history of logic and mathematics. The papers also explore how practitioners can implement Lorenzen’s systematical ideas in today’s debates on proof-theoretic semantics, databank management, and stochastics. Coverage details key contributions of Lorenzen to constructive mathematics, Lorenzen’s work on lattice-groups and divisibility theory, and modern set theory and (...) Lorenzen’s critique of actual infinity. The contributors also look at the main problem of Grundlagenforschung and Lorenzen’s consistency proof and Hilbert’s larger program. In addition, the papers offer a constructive examination of a Russell-style Ramified Type Theory and a way out of the circularity puzzle within the operative justification of logic and mathematics. Paul Lorenzen's name is associated with the Erlangen School of Methodical Constructivism, of which the approach in linguistic philosophy and philosophy of science determined philosophical discussions especially in Germany in the 1960s and 1970s. This volume features 10 papers from a meeting that took place at the University of Konstanz. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology of biobank, database, genetic, and (...) epidemiological research. (shrink)

Territorial borders just like other boundaries are involved in a politics of belonging, a politics of “us” and “them”. Border management regimes are thus part of processes of othering. In this article, we use the management of borders and populations in Europe as an empirical example to make a theoretical claim about race. We introduce the notion of the phenotypic other to argue that race is a topological object, an object that is spatially and temporally folded in distributed technologies of (...) governance. To elaborate on these notions, we first examine a number of border management technologies through which both race and Europe are brought into being. More specifically we focus on how various such technologies aimed at monitoring the movement of individuals together with the management of populations have come to play crucial roles in Europe. Different border management regimes, we argue, do not only enact different versions of Europe but also different phenotypic others. We then shift the focus from border regimes to internal practices of governance, examining forensic DNA databanks to unravel articulations of race in the traffic between databases and societies. (shrink)

Genomics is increasingly considered a global enterprise – the fact that biological information can flow rapidly around the planet is taken to be important to what genomics is and what it can achieve. However, the large-scale international circulation of nucleotide sequence information did not begin with the Human Genome Project. Efforts to formalize and institutionalize the circulation of sequence information emerged concurrently with the development of centralized facilities for collecting that information. That is, the very first databases build for collecting (...) and sharing DNA sequence information were, from their outset, international collaborative enterprises. This paper describes the origins of the International Nucleotide Sequence Database Collaboration between GenBank in the United States, the European Molecular Biology Laboratory Databank, and the DNA Database of Japan. The technical and social groundwork for the international exchange of nucleotide sequences created the conditions of possibility for imagining nucleotide sequences as a “global” objects. The “transnationalism” of nucleotide sequence was critical to their ontology – what DNA sequences came to be during the Human Genome Project was deeply influenced by international exchange. (shrink)

Integrative and naturalistic philosophy of mind can both learn from and contribute to the contemporary cognitive sciences of dreaming. Two related phenomena concerning self‐representation in dreams demonstrate the need to bring disparate fields together. In most dreams, the protagonist or dream self who experiences and actively participates in dream events is or represents the dreamer: but in an intriguing minority of cases, self‐representation in dreams is displaced, disrupted, or even absent. Working from dream reports in established databanks, we examine two (...) key forms of polymorphism of self‐representation: dreams (or dream episodes) in which I take an external visuospatial perspective on myself, and those in which I take someone else's perspective on events. In remembering my past experiences or imagining future or possible experiences when awake, I sometimes see myself from an external or ‘observer’ perspective. By relating the issue of perspective in dreams to established research traditions in the study of memory and imagery, and noting the flexibility of perspective in dreams, we identify new lines of enquiry. In other dreams, the dreamer does not appear to figure at all, and the first person perspective on dream events is occupied by someone else, some other person or character. We call these puzzling cases ‘vicarious dreams’ and assess some potential ways to make sense of them. Questions about self‐representation and perspectives in dreams are intriguing in their own right and pose empirical and conceptual problems about the nature of self‐representation with implications beyond the case of dreaming. (shrink)

DNA databases have significant commercial value. Direct-to-consumer genetic testing companies have built databanks using samples and information voluntarily provided by customers. As the price of genetic analysis falls, there is growing interest in building such databases by paying individuals for their DNA and personal data. This paper maps the ethical issues associated with private companies paying for DNA. We outline the benefits of building better genomic databases and describe possible concerns about crowding out, undue inducement, exploitation, and commodification. While certain (...) objections deserve more empirical and philosophical investigation, we argue that none currently provide decisive reasons against using financial incentives to secure DNA samples. (shrink)

Recent expansions of federal and state law enforcement databanks to include DNA samples and profiles of innocent persons threaten individual privacy, impose unjustifiable costs on society, and may undermine our pursuit of justice. The move to permanently retain DNA from arrestees and proposals for a universal database should be vigorously opposed on matters of principle, legality, and practicality.

We report the latest structural information on PREP1 tumor suppressor, the specific “oncogene” and “tumor suppressive” signatures of MEIS1 and PREP1, the molecular rules regulating PREP1 and MEIS1 binding to DNA, and how these can change depending on the interaction with PBX1, cell‐type, neoplastic transformation, and intracellular concentration. As both PREP1 and MEIS1 interact with PBX1 they functionally compete with each other. PREP1, PBX1, and MEIS1 TALE‐class homeodomain transcription factors act in an interdependent and integrated way in experimental tumorigenesis. We (...) also pool together the plethora of data available in human cancer databanks and connect them with the available molecular information. The emerging picture suggests that a similarly basic approach might be used to better dissect and define other oncogenes and suppressors and better understand human cancer. (shrink)

We introduce stellar photometry, its purpose and relationship to other astronomical quantities, presenting it within the context of astronomical research at the Vatican Observatory. We demonstrate the usefulness of the Vilnius Photometric System previously shown at Vilnius Astronomical Obs., Edinburgh Royal Obs., and Università di Roma “La Sapienza”, and then adopted by the Vatican Observatory for use with its Vatican Advanced Technology Telescope on Mount Graham, AZ, USA. The development of astronomical observations has led from photographic plates, through photoelectric detectors (...) to the use of sensitive CCD cameras. Expanding the photoelectric databank of “Vilnius Stars”, we describe the development of new techniques of data-acquisition, calibration to photometric standards, stellar classification and interstellar-matter characterization. Looking ahead, we briefly describe the extensive data set, and our plans for further detailed analyses. (shrink)

This paper examines the existing statutory frameworks in the US limiting government use of individual fingerprint, DMV, and tax data, drawing lessons for the existing statutory limitations on the use of government-controlled offender DNA databanks.

Chronic diseases represent the major illness burden of developed nations. A chronic disease databank system consists of parallel longitudinal data sets from diverse locations describing the courses of thousands of patients with chronic illness over many years. Illustrated by ARAMIS (The American Rheumatism Association Medical Information System), such data resources facilitate analysis of long term health outcomes and the factors associated with particular outcomes. A model for clinical investigation of contemporary disease is presented, based on the overwhelming prevalence of (...) chronic illness, the variability, complexity, and uniqueness of the individual patient course, the difficulties of traditional univariate reductionist approaches, and the time span required for study. In this model, data are systematically accrued and continually analyzed, and the data collected are gradually modified based upon evolving anticipation of future needs. The strategies underlying the development of ARAMIS are described, investigational results summarized, and future directions outlined. Keywords: ARAMIS, Chronic Disease Databanks, Prognosis, Health Outcomes CiteULike Connotea Del.icio.us What's this? (shrink)

The emergent Coronavirus Disease 2019 caused by the Severe Acute Respiratory Syndrome Coronavirus 2 could produce a maternal immune activation via the inflammatory response during gestation that may impair fetal neurodevelopment and lead to postnatal and adulthood mental illness and behavioral dysfunctions. However, so far, limited evidence exists regarding long-term physiological, immunological, and neurodevelopmental modifications produced by the SARS-CoV-2 in the human maternal-fetal binomial and, particularly, in the offspring. Relevant findings derived from epidemiological and preclinical models show that a MIA (...) is indeed linked to an increased risk of neurodevelopmental disorders in the offspring. We hypothesize that a gestational infection triggered by SARS-CoV-2 increases the risks leading to neurodevelopmental disorders of the newborn, which can affect childhood and the long-term quality of life. In particular, disruption of either the maternal or the fetal cholinergic anti-inflammatory pathway could cause or exacerbate the severity of COVID-19 in the maternal-fetal binomial. From a translational perspective, in this paper, we discuss the possible manifestation of a MIA by SARS-CoV-2 and the subsequent neurodevelopmental disorders considering the role of the fetal-maternal cytokine cross-talk and the CAP. Specifically, we highlight the urgent need of preclinical studies as well as multicenter and international databanks of maternal-fetal psychophysiological data obtained pre-, during, and post-infection by SARS-CoV-2 from pregnant women and their offspring. (shrink)

One interesting aspect of the Hwang-case has been the way in which this affair was assessed by academic journals such as Nature. Initially, Hwang’s success was regarded as evidence for the detrimental effects of research ethics, slowing down the pace of research in Western countries. Eventually, however, Hwang’s debacle was seen as evidence for the importance of ethics in the life sciences. Ironically, it was concluded that the West maintains its prominence in science (as a global endeavour) precisely because it (...) has its ethics in place. Bioethics was now seen as an indispensable part of quality control. In this article, I will claim that the Hwang case rather reveals that there is no reason for complacency and that there are substantial challenges awaiting us. They have to do with major transformations in the way knowledge is produced and research in the life sciences is conducted (such as the increase in pace and scale, globalisation and the growing importance of ICT and bioinformation). These transformations call for a different kind of bioethics. The focus must shift from duties of autonomous researchers concerning visible research subjects (“micro-ethics”) to responsibilities of institutionalised research networks in managing and processing large amounts of bioinformation (“macro-ethics”). Concepts such as transparency, reliability and benefit-sharing will become more important than concepts such as informed consent. Basically, it is a resurgence of the tension between the Kantian and the Hegelian view of ethics. The contours of macro-ethics will be elaborated notably as it is emerging in bioethical debates over biobanking and genetic databanks. (shrink)

Recent expansions of federal and state law enforcement databanks to include DNA samples and profiles of innocent persons threaten individual privacy, impose unjustifiable costs on society, and may undermine our pursuit of justice. The move to permanently retain DNA from arrestees and proposals for a universal database should be vigorously opposed on matters of principle, legality, and practicality.

Dans cette contribution, nous présentons la base CLAPI développée au laboratoire ICAR dans le contexte de l’évolution des bases de données de langues parlées en France au cours des trente dernières années. Nous détaillons les deux composantes de CLAPI, l’archive de corpus de langue parlée en interaction audio et vidéo enregistrés dans des situations sociales naturelles variées, et la plateforme d’outils.L’usage et l’apport de CLAPI sont illustrés par deux études. L’une décrit comment la base peut être utilisée pour des travaux (...) de linguistique interactionnelle intégrant la multimodalité (« oh là là ») ; l’autre concerne une recherche combinant données et métadonnées (« trop »). L’article est aussi l’occasion d’un bilan plus général. La mise en perspective montre en effet qu’après la période des questions est venue celle des dilemmes. La période des questions, choix et décisions à toutes sortes de niveaux a accompagné la mise en place des bases de données. L’expérience permet maintenant de mesurer leurs indéniables apports en termes non seulement de quantité de données disponibles (et traitables grâce aux outils), mais aussi de qualité (comme conséquence des exigences de standardisation liées au partage des données). La période des dilemmes nous conduit à nous interroger sur les meilleurs choix à opérer aujourd’hui dans les relations entre la poursuite des recherches sur des corpus variés (et parfois sensibles) et les exigences des bases de données ouvertes. (shrink)

During the past four years, the International Institute for Indigenous Resource Management has sponsored and co-sponsored a series of discursive roundtables on the ethical, legal, social, and cultural implications of genetic research on Indian tribes and Indian people. The deliberations of the tribal leaders, legal scholars, researchers, representatives of non-governmental organizations, and others who participated in these roundtables laid out a range of barriers to informed tribal participation in genetic research and proposed a policy, legal, and scientific research agenda to (...) fill gaps in knowledge and to otherwise support indigenous peoples' decision-making on genetic research issues.An understanding of Native American attitudes toward genetic research on their community cannot be fully understood absent an appreciation of the interrelationship among native peoples, genetic research, and the landscape, contaminated as it is by governmental and other factors. The deliberations described herein present invaluable insights into tribal attitudes toward genetic research that have application to ethical, legal and social aspects of forensic DNA databanks, sample collection and retention, and, in particular, issues of secondary non-forensic uses of such DNA. (shrink)