Ethical challenges in genomic epidemiology are the direct result of novel tools used to confront scientific challenges in the field. An orders-of-magnitude increase in scale of genetic data collection has created the need for establishing diffuse international partnerships, sometimes across developed- and developing-world countries, with ramifications for assigning research ownership, distributing intellectual property rights, and encouraging capacity-building. Meanwhile, the fact that genomic epidemiological research is so far upstream in the pipeline of therapy development has implications for the privacy rights of (...) research participants and for a rigorous definition of valid informed consent, particularly in resource-poor settings. From these scientific underpinnings, we distill out two main categories of ethical issues: (1) How should researchers ensure that the subjects of research are appropriately protected? and (2) What is the structure of an equitable and fair system for distributing the financial and scientific rewards of research? We attempt to delineate the contours of specific problems in each category and propose steps toward solutions with reference to a particular project, known as gMap.net, that focuses on genomic epidemiological studies of malaria. (shrink)

Many common human traits are believed to be a composite reflection of multiple genetic and non‐genetic factors and the genetic contribution is consequently often difficult to characterise. Recent advances suggest that subtle variation in the regulation of gene expression may contribute to complex human traits. In two reports,1,2 Cheung and colleagues scale up human genetics analysis to an impressive level in a genome‐wide search for the regulators of gene expression. They perform linkage analysis on expression profiles for over 3,500 genes (...) and then employ the HapMap resource3 to take positive findings through to association studies at the genome‐wide level. This work gives new insights into the complexities of gene regulation and the plausibility of genome‐wide study design. BioEssays 28: 968–972, 2006. © 2006 Wiley Periodicals, Inc. (shrink)

BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical (...) issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

BackgroundObtaining informed consent for participation in genomic research in low-income settings presents specific ethical issues requiring attention. These include the challenges that arise when providing information about unfamiliar and technical research methods, the implications of complicated infrastructure and data sharing requirements, and the potential consequences of future research with samples and data. This study investigated researchers’ and participants’ parents’ experiences of a consent process and understandings of a genome-wide association study of malaria involving children aged five and under in Mali. (...) It aimed to inform best practices in recruiting participants into genomic research.MethodsA qualitative rapid ethical assessment was undertaken. Fifty-five semi-structured interviews were conducted with the parents of research participants. An additional nine semi-structured interviews were conducted with senior research scientists, research assistants and with a member of an ethics committee. A focus group with five parents of research participants and direct observations of four consent processes were also conducted. French and translated English transcripts were descriptively and thematically coded using OpenCode software.ResultsParticipants’ parents in the MalariaGEN study had differing understandings of the causes of malaria, the rationale for collecting blood samples, the purposes of the study and the kinds of information the study would generate. Genomic aspects of the research, including the gene/environment interaction underlying susceptibility or resistance to severe malaria, proved particularly challenging to explain and understand.ConclusionsThis study identifies a number of areas to be addressed in the design of consent processes for genomic research, some of which require careful ethical analysis. These include determining how much information should be provided about differing aspects of the research and how best to promote understandings of genomic research. We conclude that it is important to build capacity in the design and conduct of effective and appropriate consent processes for genomic research in low and middle-income settings. Additionally, consideration should be given to the role of review committees and community consultation activities in protecting the interests of participants in genomic research. (shrink)

The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...) Consortium, one of the first international collaborative genomics research projects in Africa. (shrink)

Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...) including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important. (shrink)

This chapter begins by sketching an account of morally responsible agency and the general conditions under which it may fail. We discuss how far individuals with psychiatric diagnoses may be exempt from morally responsible agency in the way that infants are, with examples drawn from a sample of diagnoses intended to make dierent issues salient. We further discuss a recent proposal that clinicians may hold patients responsible without blaming them for their acts. We also consider cognitively impaired subjects in the (...) light of related issues in moral and political theory, asking whether they have been unjustly excluded from liberal conceptions of political community due to their presumed lack of agency. (shrink)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I (...) present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

The introduction of the modern diagnostic and therapeutic procedures to the medical practice provided a new challenge for the medicine. The art of medicine, with its default purpose of acting for the benefit of health, is therefore required to derive from technological progress effectively and rationally. As a result, the medical ethics has been engaged with the rules of economy and management of deficit medical procedures as well as their rational and fair distribution. The above suggests, that medics, given these (...) recourses, should approach each patient with a consideration to their therapeutic rights. However, the physicians cannot just concentrate on the good of one particular patient, but must take into account joint responsibility for the good of a potential patient. This makes medical ethical dilemmas similar to the ethical issues of business. The notion of responsibility is the key for discriminating these two kinds of ethics. (shrink)

Introduction La présente bibliographie a été constituée sur la base de celle parue en 1995-1996, sous le titre de “Bibliografia podmiotowa i przedmiotowa Profesora Jerzego Kalinowskiego”, Summarium 24-25 (44-45), Lublin, 1995-1996, elle-même inspirée, en ce qui concerne les années antérieures à 1983, de la bibliographie établie par R. Bozzi, La logique deontica di Georges Kalinowski, Naples, 1984, 193-204. Nous l’avons completée par...

Introduction La présente bibliographie a été constituée sur la base de celle parue en 1995-1996, sous le titre de “Bibliografia podmiotowa i przedmiotowa Profesora Jerzego Kalinowskiego”, Summarium 24-25 (44-45), Lublin, 1995-1996, elle-même inspirée, en ce qui concerne les années antérieures à 1983, de la bibliographie établie par R. Bozzi, La logique deontica di Georges Kalinowski, Naples, 1984, 193-204. Nous l’avons completée par...

This book grew out of the conviction that the original concepts of the Poznań School of Legal Theory are still perfectly suited for application today, in the era of moral pluralism and multicentric legal systems. Moreover, since we are in the midst of a period of heated disputes over the grounds of the normativity of law, and are confronting controversies about the basis for the legitimacy of court decisions, over the results of legal interpretation, and concerning the coherence of legal (...) systems, it would seem that the legal-theoretical proposals put forward by the circle of Poznań legal theorists, supported as they are by firm methodological foundations, have not by any means lost their value. (shrink)

Educated historians of philosophy reluctantly expose connections between Western esotericism and the mainstream modern philosophy Esotericism is usually associated with intellectual quackery, which leads many of its followers to heresy and exclusion from the Christian world. However, prominent representatives of the European philosophy sometimes drew their inspiration from esoteric knowledge, e.g. G. Bruno and Spinoza from kabbalah or F. W. J. Schelling from F. C. Oetinger’s theosophy. G. W. F. Hegel was probably aware that the esoteric thought played an essential (...) role in the establishing of the modern scientific method. Therefore, in his Lectures on the History of Philosophy he devoted a separate chapter to J. Boehme, who provided the basis for the modern dialectic in his theosophy. The author of this article makes a comparative analysis between the elected elements of Boehme’s and Hegel’s thought and exposes many structural similarities in their works. At the same time, the author suggests that Boehme’s theory could have been an important source of inspiration for Hegel, especially in the early phase of his intellectual development. (shrink)

Izydora Dąmbska presented her views on the semiotics of proper names in her two studies: O bezimienności [On Namelessness] and Filozofia imion własnych [Philosophy of Proper Na­mes]. The author refers mainly to the second work. I. Dąmbska begins with a syntactic definition of proper name, then she attempts to define the basic semantic function of proper name, that is, the function of naming. She emphasises the essential difference between this function of proper names and the function of denotation played by (...) descriptive names. The difference consists in the fact that a descriptive name denotes an individual object as a representative of a respective class, whereas a proper name names an individual person without any class references. A name represents an individual by way of universaliter, i.e. in its many aspects and as one despite differences in the course of his whole life. As such, the proper name represents a conscious object of knowledge and agency. It mediates in personal relations between people and is the material of legends and history, affirms the unity of its bearer, and ensures his duration beyond death and grave. Its secondary meaning is that it plays the function of naming and representing also fictionary literary figures. (shrink)

The subject matter of our considerations here is the concept of classical logic. The author begins with a brief etymological reflection and a presentation of some views ancient philosophers had (from Heraclitus to Plato) and inspired Aristotle’s and stoic discussion of logic. They brought about the first systems of formal logic and rich outlines of other branches of logic in their broad understanding, such as the methodology of sciences and semiotics. Aristotle’s logical discoveries (mainly syllogistic logic of assertoric propositions, syllogistic (...) logic of modal propositions, and theory of scientific proof), and stoics’ discoveries (logic of propositions and semiotics) are the first, highly advanced approaches to classical logic. The later history of logic consisted mainly in the reception of those ancient achievements, or in their semantic enrichment. (shrink)

This book is a formidably compelling source of insights for those who are interested in subjects ranging from moral philosophy, social justice, hermeneutics and education. It reconciles traditional theories of ethics by re-framing them through hypertextual techniques, bringing together contrasting and contradictory ethical views.

Is it OK to lie to Siri? Is it bad to mistreat a robot for our own pleasure? Under what condition should we grant a moral status to an artificial intelligence (AI) system? This paper looks at different arguments for granting moral status to an AI system: the idea of indirect duties, the relational argument, the argument from intelligence, the arguments from life and information, and the argument from sentience. In each but the last case, we find unresolved issues with (...) the particular argument, which leads us to move to a different one. We leave the idea of indirect duties aside since these duties do not imply considering an AI system for its own sake. The paper rejects the relational argument and the argument from intelligence. The argument from life may lead us to grant a moral status to an AI system, but only in a weak sense. Sentience, by contrast, is a strong argument for the moral status of an AI system—based, among other things, on the Aristotelian principle of equality: that same cases should be treated in the same way. The paper points out, however, that no AI system is sentient given the current level of technological development. (shrink)

Introduction : Picturing technology -- A sense of the transcendental -- The blank page -- Embodiment conditions -- Three exceptional technologies -- Which way to turn? -- Conclusion : Exceptional technologies, not technological exceptionalism.

Neo-picturesque landscapes are former industrial sites redeveloped as parks in a way that preserves, maintains, and shapes memory of the materials, mechanics, and scale of the industrial age. This paper presents case studies of Duisburg Nord, the High Line, and Evergreen Brick Works. It distinguishes neo-picturesque ruins from archaeological ruins on the one hand and mere redevelopment projects on the other hand; traces a continuity between the eighteenth-century picturesque and the neo-picturesque; pinpoints the distinctive form of memory that the neo-picturesque (...) engages; and defends the importance of the neo-picturesque in contemporary life. (shrink)

This chapter contains section titled: Introduction Objectivism and Constructivism Problems for Constructivism Objectivism Troubles with Objectivism References.