Kant identifies the “highest moral-physical good” as that combination of “good living” and “true humanity” which best harmonises in a “good meal in good company”. Why does Kant privilege the dinner party in this way? By examining Kant’s accounts of enlightenment, cosmopolitanism, love and respect, and gratitude and friendship, the answer to this question becomes clear. Kant’s moral ideal is that of an enlightened and just cosmopolitan human being who feels and acts with respect and love for all persons (...) and such an ideal is temporarily manifested in the sort of social interaction achievable at a good dinner party. (shrink)

Cosmopolitanism is currently one of the most prominent topics in the social sciences and humanities, and a key concept for understanding globalization. This collection of essays, featuring a line-up of leading international scholars, argues that most work on cosmopolitanism uses a normative model, rather than fully interrogating the issue empirically, comparatively and globally. This ambitious and ground-breaking collection will push the boundaries of the debate on cosmopolitanism into new areas, opening up new lines of inquiry and (...) analysis that will have an impact on the study of globalization and global process for years to come."--Publisher's website. (shrink)

Globalizations from Below uses a Constructivist International Relations approach that emphasizes the centrality of normative power to analyze and compare the four globalizations 'from below'. These are: (1) the counter-hegemonic globalization represented by the 'movement of movements' of alter-globalization transnational social activists, who try to put an end to the Neoliberal nature of the Western-centered globalization 'from above;' (2) the non-hegemonic globalization enacted by 'ant traders' that are part of the transnational informal economy; (3) the partially similar Chinese-centered globalization, (...) whose entrepreneurial migrants are strongly influenced and instrumentalized by the Chinese state; and (4) the first wave globalization 'from below' that paralleled (and outlived) the 1870-1914 globalization 'from above.' This book identifies their common features and uses them to define the concept of globalization 'from below' as a set of socio-economic or socio-political processes that involve large transnational flows of people, goods, and/or ideas characterized at least in part by informality. They are enacted by entrepreneurial or activistic individuals who either take advantage of the normative power of the hegemon at the origin of an international order and an associated globalization 'from above,' or - explicitly or implicitly - transgress, contest, and try to redefine dominant economic, legal, political, and socio-cultural norms, thus challenging the existing international order and globalization 'from above.' By constructing a unified theoretical framework, this book attempts to open a new field of interdisciplinary research that should take globalizations 'from below' out of their current scholarly marginality. This is one of the first scholarly works to collectively present more than one globalization 'from below,' and will be of great interest to students, scholars, and researchers of International Relations, International Political Economy, Development Studies, Economic History, Anthropology, Diaspora Studies, and Chinese Studies. (shrink)

Today the idea of cosmopolitanism has become widely accepted as an appropriate answer to what we now call globalization. A key reference is Kant who argues for a Recht of the world citizen, and this is normally understood as a cosmopolitan law. Apparently Kant lets the law of the world citizen be limited to a right to visit, but somehow his peace project must imply something more than just this very modest claim. Following a hint from Kant himself I (...) take a closer look at the material aspect of cosmopolitanism, i.e. the economy of travelling, and it appears that cosmopolitanism can function as an ideology for letting possible investors look for business cases, that is, for promising places for capitalist exploitation. As an answer to such strong material processes cosmopolitanism is insufficient, both as a moral imperative and as a stipulated right. What we need is a more comprehensive political and legal perspective and the solutions this indicates. To get inspiration for this, however, we can turn to Kant again, since it turns out that he does not argue for cosmopolitanism at all, neither as a programme nor as an ideology. For Kant the overall goal is perpetual peace, and the law of the world citizen represents only one subordinate element. As an answer to globalization we should thus drop the limited ideal of cosmopolitanism and follow Kant in his ambition of a threefold political constitution comprising state law, law of the people and law of the world citizen. (shrink)

To such sanguine expectations, Pheng Cheah responds deftly with a sobering account of how the "inhuman" imperatives of capitalism and technology are ...

Cosmopolitans typically argue that the realization of cosmopolitan ideals requires the creation of global political institutions of some kind. While the precise nature of the necessary institutions is widely discussed, the problem of the transition to such an order has received less attention. In this paper, we address what we take to be a crucial aspect of the problem of transition: we argue that it involves a moral coordination problem because there are several morally equivalent paths to reform the existing (...) order, but suitably placed and properly motivated political agents need to converge on a single route for the transition to be successful. It is, however, unclear how such a convergence can take place since the duty to create global institutions does not single out any coordination point. We draw on the so-called theory of hegemonic stability to address this problem and conceptualize what we call the hegemonic transition. From an explanatory point of view, we rely on the theory’s insights to explain how a hegemon may contribute to the creation of a rules-based international order by providing salient coordination points and accordingly, enabling coordination among states. From the normative point of view, we identify necessary conditions for the hegemonic transition to be morally permissible. To the extent that these conditions obtain, other states have pro tanto moral reasons to follow the salient coordination point provided by the leading state. (shrink)

Certain of Kant’s political essays suggest that the project of socio-political emancipation should be seen as a process of working ourselves out of affective attachments to pathological social relations. This aspect of Kant’s thinking is read through Marx’s materialist notion of commodity fetishism, which provides a paradigmatic approach to understanding the ways in which concrete forms of sociality either thwart or facilitate the process of emancipation. It is then suggested that Freud’s notion of the work of mourning can help (...) to clarify the possibility of breaking with the fixated attachments that contribute to our own domination. In this light, the author considers the respective accounts of the relationship between Freudian theory and Kantian cosmopolitanism given by Julia Kristeva and Judith Butler in light of Theodor Adorno’s materialist account of working-through the past. Reading Freud with Adorno offers a more coherent clarification of the concrete conditions of possibility of cosmopolitanism. (shrink)

This paper covers views on certain major challenges to the justification of ethical cosmopolitanism `s existence. They could be understood in the context of effects of the global economy on human life and values, due its social imbalances and inequalities. The foremost, guiding idea of ethical cosmopolitanism is the one that all humans must be considered as equal However, this postulate is way too much questioned today in the Globalization era. Forced migration is the first challenge in (...) topicality nowadays. It spells out global displacement of people caused by poverty and war danger. The economic and political elite in the world today ignores its obligation to treat equally victims of forced migration - and is inclined to define multiculturalism as useless. The growth of forced migration witnessed at present is caused by the existing deepening of inequalities and global injustice. We need a communitarian approach to the problem of forced migration. Another challenge is the moral criticism of global capitalism starting out from the point of view of existence of alternative globalism. Many organizations of the global civic society have established international cooperation in their collective actions for development of a socially-responsible globalization. The vast majority of people in the world are fighting against neoliberal policies and for their social rights: equal treatment from this point of view is an important aspect of cosmopolitanism. Our planet does not have adequate resources to secure a high standard of living for all humans, on a par with that of the richest peoples. Today, in the process of ongoing march of neoliberal globalization, rich men are becoming ever richer and the world community is not adequately successful in its efforts to reduce poverty. Third challenge in this context are the abuses of cosmopolitanism in its justification of the so-called “humanitarian interventions” of the international community in shouldering the responsibility for mankind`s development and securing observation of human rights. Cosmopolitanism could thus be used as an ideology by the richest elites to justify their worldwide expansionism. The idea that the international community is interested in the observation of human rights when they are violated by a “dictatorial state” is being forwarded. Yet, there is no doubt today that some of these interventions have been motivated by imperialist strategies of ‘the Great Powers’ in action. Two possible options are available here: choice of cosmopolitanism or choice republicanism; republicanism implies respect for the principle of sovereignty of each country and coalitions of countries set up on the basis of commonly-shared interests. (shrink)

The ethics of hospitality – the welcome of the foreigner – is implied in all moral debate in international relations ranging from questions of asylum to those of humanitarian intervention. Why then has there been so little reflection on hospitality in the study of international relations to date? Seeking to correct this striking omission, and making an important and original contribution to debates about ethics in international relations in the process, Baker outlines a theory of cosmopolitanism as hospitality which (...) goes beyond existing cosmopolitanisms. He argues that we must understand cosmopolitanism not as the pursuit of a world in which there are no more foreigners but as the welcome of the foreigner. However, though hospitality calls for a welcome, there is always a decision on the welcome to be made. Cosmopolitanism as hospitality is therefore always as much a politics as it is an ethics. Addressing issues of central concern for those who seek to understand our obligations to strangers, this book will be of interest to students and scholars of international relations, security studies, ethics, and political and international theory. (shrink)

Over the last 20 years, cosmopolitan theories have been benefiting greatly from the dialogue between defenders and critics of world citizenship. Yet, the decidedly polemic aspect of this debate, while allowing for intellectual progress, is also responsible for overdrawn generalizations. Instead of entering into the debate directly, this article attempts to refute a specific anti-cosmopolitan claim raised by Chantal Mouffe. Her realist objection to cosmopolitanism, derived from the conceptual framework of agonistic pluralism, is mistaken at a crucial point: a (...) firm dichotomy between politics and morality cannot provide an alternative to theories of world citizenship, because Mouffe’s embrace of multipolarity as a principle of global politics must equally appeal to a set of universal norms governing international relations. This article argues that even the realist model of multipolarity needs to conceive of a minimal morality to create the symbolic ground on which various power centres can be held accountable. (shrink)

From its inception in 1987 social epistemology has been divided into analytic and critical approaches, represented by Alvin I. Goldman and Steve Fuller, respectively. In this paper, the agendas and some basic ideas of ASE and CSE are compared and assessed by bringing into the discussion also other participants of the debates on the social aspects of scientific knowledge—among them Raimo Tuomela, Philip Kitcher and Helen Longino. The six topics to be analyzed include individual and collective epistemic (...) agents; the notion of scientific community; realism and constructivism; truth-seeking communities; epistemic and social values; science, experts, and democracy. (shrink)

The main goals of this work are: Ethical and social aspects of policy, contemporary liberal democratic structures, morality in political decision-making, human rights and their individual conceptions, political-philosophical ideas, function of a social-scientific education, selected aspects of security policy, environmental policy, eco-social market economy and religion and law.

The relevance of the study of the problem of Christian axiology is due to the growing interest in religion and the associated change in world outlook and values ​​in contemporary Ukrainian society. The study of religious values ​​is caused by the urgent problem of finding universal moral values ​​of social development and clarifying the content, structure and nature of their functioning. The scientific study of religious values ​​is also relevant because this problem is closely linked to the value (...) class='Hi'>aspects of political life. Christian values ​​are one of the most important factors influencing the formation and development of Ukrainian culture. (shrink)

En la actualidad Cuba desarrolla un Programa de Atención Integral al Paciente con Úlcera de Pie Diabético mediante el uso del Heberprot-P, esencial para disminuir la amputación y la discapacidad. El trabajo tiene el objetivo de realizar un diagnóstico sobre la aplicación del Heberprot-P en el Servicio de Angiología del Hospital Provincial Universitario Manuel Ascunce Domenech de Camagüey. Se realizaron encuestas a pacientes para identificar necesidades sentidas relacionadas con el tratamiento y para las actitudes manifiestas, y se hicieron entrevistas al (...) personal médico y de enfermería. El diagnóstico permitió corroborar la necesaria investigación con enfoque social del servicio de salud escogido a nivel territorial. Destaca elevar el trabajo de captación de pacientes desde el nivel primario de salud para garantizar un mayor alcance del programa, así como la trascendencia del apoyo familiar y la relación profesional de la salud- paciente a fin de lograr la calidad requerida. At present Cuba is developing a program concerning the care of patient with ulcer of the diabetes foot by means of Heberprot-P essential to reduce the amputation and disability. The aim of this paper is to carry out a diagnosis about social aspects of the application of the Heberprot-P in the Angiology service at Manuel Ascunce Domenech Hospital in Camaguey. Some surveys were carry out to identify certain needs related with the treatment and the attitude shown and on the other hand some interview were made to the medical and nursing staff. The diagnosis allowed to verify the need of the research with social approach. The paper highlight how to incorporate patients from the primary health level, in order this program has a higher scope and the importance of the family support and the professional relationship to accomplish the quality required. (shrink)

Particular social aspects of the nature of science, such as economics of, and entrepreneurship in science, are understudied in science education research. It is not surprising then that the practical applications, such as lesson resources and teaching materials, are scarce. The key aims of this article are to synthesize perspectives from the literature on economics of science, entrepreneurship, NOS, and science education in order to have a better understanding of how science works in society and illustrate how such (...) a synthesis can be incorporated in the practice of science education. The main objectives of this article are to argue for the role and inclusion of EOS and entrepreneurship in NOS and re-define entrepreneurship in the NOS context; explore the issues emerging in the “financial systems” of the Family Resemblance Approach to NOS and propose the inclusion of contemporary aspects of science, such as EOS and entrepreneurship, into NOS; conceptualize NOS, EOS, and entrepreneurship in a conceptual framework to explain how science works in the society; and transform the theoretical knowledge of how science operates in society into practical applications for science teaching and learning. The conceptual framework that we propose illustrates the links between State, Academia, Market and Industry. We suggest practical lesson activities to clarify how the theoretical discussions on the SAMI cycle framework can be useful and relevant for classroom practice. In this article, science refers to physics, chemistry, and biology. However, we also recommend an application of this framework to other sciences to reveal their social-institutional side. (shrink)

Some contemporary philosophers of action have contended that the intentions, decisions, and actions of collective social agency are reducible to those of the individuals involved. This contention is based on two assumptions: (1) that collective agency would require super-minds, and (2) that actions presuppose causes that move our bodies. The problem of how to account for collective action had not been regarded as a problem in the history of philosophy earlier.The explanation of why ancient Greek philosophers did not see (...) joint agency as a problem is not, as sometimes assumed, that they had no, or only a weak, sense of individuality. Nor is it because they simply overlooked the difference between individual and collective agency. It is, rather, as Aristotle’s conception of humans as ‘social’ or ‘political’ animals indicates, that the aims and ends of actions, and the means to bring them about by acting together, is the result of practice from early on. Without the acquisition of language and moral habituation humans would not become humans. There is, then, a shared understanding about common agency from infancy on. Individuals may disagree about some particular aim and action, and act only because it is a decision of the majority. But no super-minds are required to explain the communality of wishes. That Aristotle ignored the fact that all motion starts in individual bodies is explained by the difference between motions and actions: moves that are not determined by their ends are mere motions, not actions. So what moves an individual body can be the wish to bring about a joint action with another person or with a collective of persons. (shrink)

In the epistemological context of theory transferand scientific exchanges, the aim of this paper is to indicate the presence of Weberian categories and ideas on dependency theory formulated by Fernando Cardosoand Enzo Faletto. Here we see how the construction of this paradigm was based on some issues, concepts, approaches and orientations of the Weberian research program formulated by José Medina Echavarría to explain Latin American development. We will also consider the contexts of enunciation and reception theories, allowing us to talk (...) about the "sociological school" that was formed in the Social Planning Division of ILPES in mid-sixties, crucial for understanding the history of sociology in Latin America. En el contexto de la discusión epistemológica sobre el examen de las transferencias y los intercambios científicos de las teorías, el objetivo de este artículo es señalar la presencia de categorías e ideas weberianas en lateoría de la dependencia formulada por Fernando Cardoso y Enzo Faletto. Aquí veremos cómo la construcción de este paradigma se sustentó en algunos temas, conceptos, enfoques y orientaciones del programa de investigación weberiano formulado por José Medina Echavarría para explicar el desarrollo latinoamericano. También tendremos en cuenta los contextos de enunciación y de recepción de las teorías, lo que nos permitirá hablar de la "escuela sociológica" que se formó en la División de Planificación Social del ILPES a mitad de los años 60, decisiva para comprender la historia de la sociología en América Latina. (shrink)

In moments of daring, some physical scientists consider problems of social inquiry, hoping naively that the methods of physical inquiry will provide them with special insight. In my own work on problems of industrial production where I am searching for “practical” means for optimizing production in some socially satisfactory sense, I find that the physical scientist cannot escape the responsibility for social inquiry. So far as I can understand the nature of this work, it requires for its fruitful (...) pursuit a methodology which leans heavily on the concepts of statistical control of Shewhart, of cybernetics of Wiener and of experimentalism of Singer, Churchman and Ackoff. (shrink)

My comments on Jacqueline Taylor's rich and interesting study1 will focus on a theme which I found particularly thought provoking: the discussion of Hume's treatment of pride. I think the topic of pride is central to the book's structure—closely integrated with the recurring consideration of what is distinctive in Hume's approach to the social significance of the passions.I am going to come at this theme indirectly—through consideration of the differences between Hume and Spinoza on the nature and significance of (...) pride. Taylor shows that Hume has made it possible for pride to be considered as a positive trait, perhaps even as a virtue. Spinoza's attitude to pride in the Ethics is, in contrast, quite negative. The... (shrink)

The interdisciplinary field of neurorobotics looks to neuroscience to overcome the limitations of modern robotics technology, to robotics to advance our understanding of the neural system’s inner workings, and to information technology to develop tools that support those complementary endeavours. The development of these technologies is still at an early stage, which makes them an ideal candidate for proactive and anticipatory ethical reflection. This article explains the current state of neurorobotics development within the Human Brain Project, originating from a close (...) collaboration between the scientific and technical experts who drive neurorobotics innovation, and the humanities and social sciences scholars who provide contextualising and reflective capabilities. This article discusses some of the ethical issues which can reasonably be expected. On this basis, the article explores possible gaps identified within this collaborative, ethical reflection that calls for attention to ensure that the development of neurorobotics is ethically sound and socially acceptable and desirable. (shrink)

Inspired by Ronald Giere’s cognitive approach to scientific models, Cognitive Structural Realism has presented a naturalist account of scientific representation. CSR characterises the structure of theories in terms of cognitive structures. These are informational structures embodied in the brains of scientists. CSR accounts for scientific representation in terms of the dynamical relationship between the organism and its environment. The proposal has been criticised on account of its negligence of social aspects of scientific practice. The present paper aims to (...) chart out a reply to the objection. It shows that cognitive structures do not need to be put inside the brains of single individuals. Cognitive structures are redefined as extended structures in distributed cognitive systems under Free Energy Principle. (shrink)

Symptom Checker Applications (SCA) are mobile applications often designed for the end-user to assist with symptom assessment and self-triage. SCA are meant to provide the user with easily accessible information about their own health conditions. However, SCA raise questions regarding ethical, legal, and social aspects (ELSA), for example, regarding fair access to this new technology. The aim of this scoping review is to identify the ELSA of SCA in the scientific literature. A scoping review was conducted to identify (...) the ELSA of SCA. Ten databases (e.g., Web of Science and PubMed) were used. Studies on SCA that address ELSA, written in English or German, were included in the review. The ELSA of SCA were extracted and synthesized using qualitative content analysis. A total of 25,061 references were identified, of which 39 were included in the analysis. The identified aspects were allotted to three main categories: (1) Technology; (2) Individual Level; and (3) Healthcare system. The results show that there are controversial debates in the literature on the ethical and social challenges of SCA usage. Furthermore, the debates are characterised by a lack of a specific legal perspective and empirical data. The review provides an overview on the spectrum of ELSA regarding SCA. It offers guidance to stakeholders in the healthcare system, for example, patients, healthcare professionals, and insurance providers and could be used in future empirical research to investigate the perspectives of those affected, such as users. (shrink)

Nanotechnology is an important platform technology which will add new features like improved biocompatibility, smaller size, and more sophisticated electronics to neuro-implants improving their therapeutic potential. Especially in view of possible advantages for patients, research and development of nanotechnologically improved neuro implants is a moral obligation. However, the development of brain implants by itself touches many ethical, social and legal issues, which also apply in a specific way to devices enabled or improved by nanotechnology. For researchers developing nanotechnology such (...) issues are rather distant from their daily work in the lab, but as soon as they use their materials or devices in medical applications such as therapy of brain diseases they have to be aware of and deal with them. This paper is intended to raise sensitivity for the ethical, legal and social aspects (ELSA) involved in applying nanotechnology in brain implants or other devices by highlighting the short term problems of testing and clinical trials within the existing regulatory frameworks (A), the short and medium-term questions of risks in the application of the devices (B) and the long-term perspectives related to problems of enhancement (C). To identify and address such issues properly nanotechnologists should involve ethical, legal and social experts and regulatory bodies in their research as early as possible. This will help to remove pressure from regulatory bodies, to settle public concern and to prevent non-acceptable developments for the benefit of the patients. (shrink)

This study addresses the social aspect of the duty of pilgrimage through the documentation method based on sociological perspective. The aim of this paper is to determine the social gains of people through the pilgrimage. Religion is an phenomenon that people need in every aspect of their daily life. Because religion is one of the phenomenon that deeply affect the individual and society. The pilgrimage, which is one of the sociological expressions of religion, and maintains its existence in (...) the form of creed, worship and religious community, is instrumental in strengthening and consolidating the faith and feeling the feelings of brotherhood. For instance; spiritual fundamentals of integration are based on Quran by means of worships such as salaat, fasting and alms with the pilgrimage as well as the messages serving as guidance for socio-cultural integration. In accordance with this, worships, with its psychological effects, lead people to attain social aspects such as brotherhood, solidarity, protecting each other, enduring and overcoming distresses together, accomplishing societal sharing by meeting on the common ground of benefaction in the establishment and subsistence of the Islamic community. The pilgrimage, on that sense, is required to have its principal qualification once more in where the historical, social, political and economic issues of the Islamic world are discussed and solutions addressing such issues are delivered accordingly. Therefore, the pilgrimage is not expected to only affects the individuals, families, groups but also regulates the national and transnational lives of societies. (shrink)

Using agent‐based modelling, Harrington, Kleber, Reubold, Schiel & Stevens (2018) develop a unified model of sound change based on cognitive processing of human speech and theories of how social factors constrain the spread of change throughout a community. They conclude that many types of change result from how biases in the phonetic distribution of phonological categories are transmitted via accommodation processes between individuals in interaction.

After reading the essays of Mr. Ts'ai and Mr. Chu, I have a few immature opinions. Generally speaking, I feel that in dealing with the errors of their opponents, both Ts'ai I in his criticism of Huang Yüeh-mien and Chu Kuang-ch'ien in his criticism of Ts'ai I are quite accurate and convincing. However, in presenting their own arguments of what is right, both of them are on shaky ground and in error. That is because in one way or another, consciously (...) or unconsciously, they either deny the objective aspect of the existence of beauty or deny the social aspect of the existence of beauty . All of them consider the objective and the social aspects of beauty as being either this or that, as mutually exclusive and irreconcilable opposites. They think that if we acknowledge the social aspect of beauty, we then have to deny the objective aspect, the fact that the existence of beauty does not depend on the subjective conditions of a person ; or if we acknowledge the objective aspect, we have to deny the social aspect, the fact that the existence of beauty depends on the social life of human beings. But in fact it is not like that. On the one hand, beauty cannot be separated from human society; on the other hand, it can have an objective existence which is independent of man's subjective consciousness. It is this question that I shall discuss. (shrink)

How are individuals socialized today? To answer these questions, a unique investigation has been carried out using two scales of analysis: the scale of the cosmopolitan world as well as the scale of everyday life and socialization to otherness.

Despite increased focus on emotional language, research lacks for the most emotional language: Swearing. We used event-related potentials to investigate whether swear words have content dist...

Rare diseases are a heterogenic group of disorders with a little in common except of their rarity affecting by less than 5 : 10.000 people. In the world is registered about 6000-8000 rare diseases with 6-8% suffering population only in the European Union. In spite of rarity, they represent an important medical and social problem due to their incidence. For many rare diseases have no treatment, but if it exists and if started on time as being available to patients, (...) there is a good prognosis for them to be able for normal life. The problems of patients affected by rare diseases are related to the lack of diagnosis and timely undergoing as well as their treatment or prevention. Orphan drugs are products intended for treatment, diagnosis or prevention of rare diseases, but for their development and marketing the industry has not been interested in yet because of their marketing reasons. Patients suffering from a rare disease although belonging to the vulnerable group for their specific health needs, is becoming invisible in the health care system due to their additional needs un properly recognized. Ethical problems faced by patients, but also health care professionals are related to the allocation of medical diagnostics, unequal approach to health care, inappropriately specialized social services as well as therapy and rare orphan drugs unavailability. Ethical questions related to clinical trails on orphan drugs, population screening and epidemiology testing on rare diseases will also be discussed in this paper. [Projekat Ministarstva nauke Republike Srbije, br. 41004: Rare diseases: Molecular pathophysiology, the diagnostic and therapeutical modalities, social, ethical and legal aspects] Retke bolesti su veoma heterogena grupa poremecaja i imaju malo toga zajednickog osim retkosti, posto pogadjaju manje od pet osoba na 10.000 ljudi. U svetu je evidentirano izmedju 6.000 i 8.000 retkih bolesti koje pogadjaju sest do osam procenata stanovnistva samo u Evropskoj uniji. Dakle, iako retke, one predstavljaju vazan medicinski i socijalni problem s obzirom na broj obolelih. Za mnoge retke bolesti nema terapije, a ukoliko ona postoji i ako se na vreme zapocne i bude dostupna pacijentima, postoje dobri izgledi da ce oboleli moci da zive normalnim zivotom. Problemi s kojima se susrecu pacijenti sa retkim bolestima vezani su za dijagnostikovanje u smislu nemogucnosti ili nepravovremenog postavljanja dijagnoze, kao i same terapije ili prevencije pojave bolesti. Orphan lekovi su proizvodi koji su namenjeni za lecenje, dijagnozu ili prevenciju retkih bolesti, za ciji razvoj i marketing industrija nije zainteresovana iz trzisnih razloga. Pacijenti s retkim bolestima, iako pripadaju osetljivoj grupi, jer imaju specificne zdravstvene potrebe, ostaju nevidljivi u zdravstvenom sistemu, jer se njihove dodatne specificne potrebe ne prepoznaju. Eticki problemi s kojima se susrecu pacijenti, ali i zdravstveni radnici, ticu se alokacije zdravstvene dijagnostike, nejednakog pristupa zdravstvenoj zastiti i nezi, nedostatka specijalizovanih socijalnih usluga, kao i nepostojanja i nedostupnosti terapije orphan lekovima. Eticka pitanja retkih klinickih ispitivanja orphan lekova i populacionih i skrining ispitivanja u vezi sa retkim bolestima takodje su razmatrani u ovom radu. PR Projekat Ministarstva nauke Republike Srbije, br. 41004: Rare diseases: Molecular pathophysiology, the diagnostic and therapeutical modalities, social, ethical and legal aspects. (shrink)