The importance of socio-economic impacts from the introduction and use of genetically modified crops is reflected in increasing efforts to include them in regulatory frameworks. Aiming to identify and understand the present knowledge on SEI of GM crops, we here report the findings from an extensive study of the published international scientific peer-reviewed literature. After applying specified selection criteria, a total of 410 articles are analysed. The main findings include: limited empirical research on SEI of GM crops in the (...) scientific literature; the main focus of the majority of the published research is on a restricted set of monetary economic parameters; proportionally, there are very few empirical studies on social and non-monetary economic aspects; most of the research reports only short-term findings; the variable local contexts and conditions are generally ignored in research methodology and analysis; conventional agriculture is the commonly used comparator, with minimal consideration of other substantially different agricultural systems; and there is the overall tendency to frame the research upon not validated theoretical assumptions, and to over-extrapolate small-scale and short-term specific results to generalized conclusions. These findings point to a lack of empirical and comprehensive research on SEI of GM crops for possible use in decision-making. Broader questions and improved methodologies, assisted by more rigorous peer-review, will be required to overcome current research shortcomings. (shrink)

Up to the present, there have not been any specific norms regarding medically assisted human reproduction in Romanian legislation. Due to this situation the general legislation regarding medical assistance, the Penal and Civil law and the provisions of the Code of Deontology of the Romanian College of Physicians are applied to the field of medically assisted human reproduction. By analysing the ethical and legal conflicts regarding medically assisted human reproduction in Romania, some characteristics cannot be set apart (...) because they derive from religious, cultural and socio-economic aspects. In this article the authors identify the development stages of medically assisted human reproduction in Romania, beginning from these characteristics and insisting upon the failure of the legal system in this specific field. The authors consider that the law regarding medically assisted human reproduction cannot be effective because it did not take into account the ethical and cultural aspects that might appear. Furthermore, in this framework of the legal process, no public debate involving the representatives of civil society was undertaken although the Council of Europe Oviedo Convention approved by our country according to law no. 17/2001 stipulated exactly this working method. Content Type Journal Article Pages 4-13 Authors Beatrice Ioan, PHD, MD, MA IN BIOETHICS, University of Medicine and Pharmacy, Iasi, Romania Vasile Astarastoae, PHD, MD, JD, University of Medicine and Pharmacy, Iasi, Romania Journal Human Reproduction & Genetic Ethics Online ISSN 2043-0469 Print ISSN 1028-7825 Journal Volume Volume 14 Journal Issue Volume 14, Number 2 / 2008. (shrink)

Modern genetics becomes a bridge between the natural sciences, humanities and social practtoon the social life of biomedicine and genetics this branch of science makes these branches of science by comparable in their socio-forming role to politics and economics factors. The research objective of this paper is theoretical analysis of social and cultural challenges posed by the development of basic genetics and genetic technologies. The problems of this book may be attributed to the new field of science, (...) formed at the intersection of genetics and sociology, which was called "social Genetics" (community genetics). In the field of philosophy and methodology of science, its goal is a comparative historical-scientific and philosophical and methodological analysis of general mechanisms of evolution of the dual socio-cultural and scientific paradigms. (shrink)

The economic and social essence of the current revolution in science and technology taking place under the conditions of socialism is that it shapes new societal needs and at the same time creates the conditions for satisfying them.

The advent of CRISPR has drastically moved the possibility of genetically modifying human genomes from the space of science fiction into nearby reality. Whether one considers the positive results f...

Behavioral economics focuses mainly on how limitations of the human cognitive apparatus, risk attitudes, and human sociality affect decision making. The former two lead to deviations from rationality standards, the latter to deviations from rational self-interest. Some of these research interests are also shared by evolutionary psychology which, however, explains the observed deviations by features of the human genetic endowment conjectured to have evolved under fierce selection pressure in early human phylogeny. Important as the decision-making theoretical (...) perspective of the two disciplines is, it will be claimed to be too narrow to fully account for what an evolutionary approach has to say about economic behavior. This is particularly true regarding the questions of what choices are made and what causes them, i.e., the motivational aspects of behavior. In the language of economics this points to the agents’ preferences. This article discusses how preferences relate to the human genetic endowment, how they can change over time, and what conclusions have to be drawn from extending the analysis to the motivational side. (shrink)

This target article considers the relation of fluid cognitive functioning to general intelligence. A neurobiological model differentiating working memory/executive function cognitive processes of the prefrontal cortex from aspects of psychometrically defined general intelligence is presented. Work examining the rise in mean intelligence-test performance between normative cohorts, the neuropsychology and neuroscience of cognitive function in typically and atypically developing human populations, and stress, brain development, and corticolimbic connectivity in human and nonhuman animal models is reviewed and found to provide (...) evidence of mechanisms through which early experience affects the development of an aspect of cognition closely related to, but distinct from, general intelligence. Particular emphasis is placed on the role of emotion in fluid cognition and on research indicating fluid cognitive deficits associated with early hippocampal pathology and with dysregulation of the hypothalamic-pituitary-adrenal axis stress-response system. Findings are seen to be consistent with the idea of an independent fluid cognitive construct and to assist with the interpretation of findings from the study of early compensatory education for children facing psychosocial adversity and from behavior genetic research on intelligence. It is concluded that ongoing development of neurobiologically grounded measures of fluid cognitive skills appropriate for young children will play a key role in understanding early mental development and the adaptive success to which it is related, particularly for young children facing social and economic disadvantage. Specifically, in the evaluation of the efficacy of compensatory education efforts such as Head Start and the readiness for school of children from diverse backgrounds, it is important to distinguish fluid cognition from psychometrically defined general intelligence. (Published Online April 5 2006) Key Words: cognition; cognition-emotion reciprocity; developmental disorders; emotion; fluid cognition; Flynn effect; general intelligence; limbic system; neuroscience; phenylketonuria; prefrontal cortex; psychometrics; schizophrenia. (shrink)

Human genetics research appears to be approaching a period of re-examination due to the decades-long failure of molecular genetic research to uncover the genes presumed to underlie psychiatric disorders, psychological traits, and some common medical conditions. As currently dominant theories of genetic causation come more into question, we will see a renewed interest in reassessing the potential roles of genes and environment in these areas. To illustrate the potentially harmful and diversionary impact of emphasizing genetics over the (...) environment, the author tells a story in the form of a parable. In this parable, the citizens of a medium-size city are confronted with the task of dealing with a group of arsonists who are systematically burning down several houses each week. The Mayor argues that the best way to prevent arson is to analyze the types of wood used to build the city’s houses, with an accompanying lack of interest in arresting the arsonists. Her opponents argue that regardless of the type of wood used, the city and its citizens should prevent arson attacks by focusing attention on identifying and arresting the arsonists. The Mayor’s position prevails, and the arson attacks continue for years to come at the same time as researchers continue to study and analyze the wood used to construct the houses. Informed readers will recognize the analogous ideas, research strategies, interest groups, publications, and historical controversies related to “nature–nurture” issues, which encompass every aspect of the parable. (shrink)

Matter as such produces nothing, changes nothing, does nothing; and however convenient it may afterwards be to abbreviate our nomenclature and our descriptions, we must most carefully realize in the outset that the spermatozoon, the nucleus, the chromosomes or the germ-plasma can never act as matter alone, but only as seats of energy and as centres of force.Science is a human endeavor that is rarely if ever just about science: it is also a social, political, and economic enterprise. (...) As such it is structured around an ethos: a belief system, or theory, that accounts for the nature of relevant aspects of existence. Much like other belief systems in the broader culture in which they occur, we build stories in defense... (shrink)

The book analyses moral and legal problems of assisted reproduction providing a pluralistic approach which combines principles of procreative beneficence, procreative nonmaleficence, reproductive autonomy and rationality with the meaning and nature of the parent-child relationship as the main criterion of moral assessment.

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 22 (2002) 47-60 [Access article in PDF] Economic Aspects of Social and Environmental Violence from a Buddhist Perspective Sulak Sivaraksa Pacarayasara I have been asked to write on some economic aspects of social and environmental violence, approaching the subject from a Buddhist perspective. Indeed this invitation offers a wide range of choices, but I shall try to keep my subject matter fairly general and straightforward. (...) The present economic reality, widely known as neoliberal capitalism, prizes the accumulation of profits over human well-being and environmental sustainability. As such, it is criminal and hence definitely not the way to regulate or organize the global society. The present trend, however, is increasingly giving the agents and institutions of capital a free hand to do so.The main beneficiaries of this violent and highly unjust system are invariably transnational corporations (though some critics prefer to call them transnational tyrannies), big financial investors, and their supporters. Roughly two-thirds of what is known today as world trade are simply intrafirm or interfirm trade. Small wonder that they are virtually the present-day "masters of the universe," increasingly accumulating special rights, influence, and power vis-à-vis the mass of humanity. An open secret is that the wealthiest 20 percent of the world's population receive 83 percent of the world's total income—a fact that no longer creates consternation or moral outrage in the mainstream; rather, it is taken as a healthy phenomenon that will contribute to human progress. Moreover, the environment is being plundered to quench the greed—which happens to be a bottomless pit—of the few. Inevitably, this creates a two-tiered system both within and between countries; a small opulent minority builds their castles on the suffering and impoverishment of the absolute majority of humanity. A large segment of humanity enjoys freedom with no opportunities and has the freedom to starve but does not enjoy freedom from poverty. Everyday thousands of children are dying from easily preventable disease. Millions more are malnourished or starving. It is against this backdrop that we need to discuss some of the economic aspects of social and environmental violence from a Buddhist perspective.Let us first deal with the production side of the capitalist equation. What is its main driving force and value system? How do they impact social organization and the environment? [End Page 47] Undeniably, the fuel that keeps the capitalist engine running is profit: the more of it, the better, the argument goes. Hence, corporations must be free to pursue it at all costs. The ends justify the means. It is also argued that the profit generated by the system will eventually trickle down to benefit the mass of humanity. The available evidence points otherwise. To be fair, capitalism does generate some benefits to humanity, but they are largely unintended by-products of the system.In the mainstream discourse, profit is said to derive solely from entrepreneurship —a concept that acts as a bicarbonate of soda for intellectual and moral indigestion. In reality, the easiest and cheapest way to reap massive profit is exploitation or ostracism: One is rich by keeping or making others poor, directly or otherwise. The masters then seek solace in the tenuous assumption that the global economy utilizes the best and disposes the rest. Furthermore, the environment is seen as a subsystem of international capitalism, not vice versa. Hence it is to be raped in order to lubricate the wheels of the capitalist machine. Put differently, the insatiable quest for profit upheld by capitalism really reflects greed, hatred, moral callousness, and wanton criminal negligence toward the well-being of the people and environment. The name of the game is getting ahead even at another's expense, to rise to the top of the pecking order. If one frequents any bookstore, one is likely to find business books with interesting titles such as Divide and Rule and Colonizing the Market. This nefarious aggressiveness is benignly known as "free competition" in mainstream parlance. Those who succeed to the top are lauded as "efficient." If allowed to have a firm... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Buddhist-Christian Studies 22 (2002) 2-15 [Access article in PDF] Economic Aspects of Social and Environmental Violence John B. Cobb Jr. Claremont School of Theology I When we think of violence, what first comes to mind are violent acts by individuals or groups against other individuals. We think of rapes and murders, lynchings and muggings, beatings and armed robberies. We want the police to protect us from this violence. (...) Unfortunately, we know that police are tempted, in turn, to employ their power in violent ways, chiefly against those guilty of crimes, but sometimes against the innocent. The cycle of violence on the part of individuals and groups goes on.Bad as this violence is, it is worse when the state, instead of restricting it, supports and requires it. Political authorities have always exercised violence against their own people, especially those they suspected of being threats to their power. But in the twentieth century, state violence reached previously unheard of levels. For the sake of building a communist society, Stalin killed millions and imprisoned millions more. The Nazis undertook to purify Germany of Jews, gypsies, and other undesirables through extermination undertaken through bureaucratic processes.We Americans do not think of ourselves as having employed state power in any such way. We know that national power was used violently to drive Native Americans off their land down through the nineteenth century. We know that southern states used their power to enforce segregation and protect whites who engaged in violent acts against blacks in order to maintain total white domination over them. But we now think of the national government much more as the protector of human rights. This is not entirely false.We tend not to recognize, however, the amount of violence the national government is exercising in the wars against crime and drugs. In order to reduce individual violence as well as drug use, we have created a prison population of two million. One-fourth of all the prisoners in the world are in the United States, most of them jailed for nonviolent crimes. Although drug use is more or less equally spread among ethnic and economic groups, most of those imprisoned for this crime are poor and ethnic minorities. In the name of law and order, enormous violence is inflicted by the United States against the people of its ghettos. [End Page 3]In this same century war also took on new dimensions. It has been waged against entire populations instead of armies. The aim at total destruction came to its fullest expression when twice the United States dropped atomic bombs on Japan.World War II has made all of us sadly aware of the horrors of state violence. It has turned us against nationalism. We are appalled as we see nationalism raise its ugly head again in the former Soviet Union and especially in the former Yugoslavia. When ethnic groups undertake to destroy each other, our moral condemnation is unambiguous. Personal, group, and state violence remains a problem, but at least the wrong involved in this is widely understood.In all civilization there has been another kind of violence—economic. In much of history economic violence has been closely related to the forms noted above. The rich have been able to impose their will on the poor because they could employ persons to exercise violence for them and they could influence state action. We see this glaringly in the "goon squads" employed by the wealthy in some Latin American countries to intimidate and kill those who protest their actions. These goon squads often work closely with the military power of the state.We know that in this country as well, wealth reduces the chance of conviction for crimes. It also buys influence in government. On the whole the United States government throughout history has supported the interests of those with money. Today the power of wealth in the political process is clearly evident. We recognize that this situation is corrupt, but we do not ordinarily think of it as a form of violence. This is because the violent consequences are indirect, and we are... (shrink)

Advances in genetic technology in general and medical genetics in particular will enable us to intervene in the process of human biological development which extends from zygotes and embryos to people. This will allow us to control to a great extent the identities and the length and quality of the lives of people who already exist, as well as those we bring into existence in the near and distant future. Genes and Future People explores two general philosophical questions, (...) one metaphysical, the other moral: (1) How do genes, and different forms of genetic intervention (gene therapy, genetic enhancement, presymptomatic genetic testing of adults, genetic testing of preimplantation embryos), affect the identities of the people who already exist and those we bring into existence? and (2) How do these interventions benefit or harm the people we cause to exist in the near future and those who will exist in the distant future by satisfying or defeating their interest in having reasonably long and disease-free lives? Genes and Future People begins by explaining the connection between genes and disease, placing genetic within a framework of evolutionary biology. It then discusses such topics as how genes and genetic intervention influence personal identity, what genetic testing of individuals and the knowledge resulting from it entails about responsibility to others who may be at risk, as well as how gene therapy and genetic enhancement can affect the identities of people and benefit or harm them. Furthermore, it discusses various moral aspects of cloning human beings and body parts. Finally, it explores the metaphysical and moral implications of genetic manipulation of the mechanisms of aging to extend the human life span.The aim Genes and Future People is to move philosophers, bioethicists, and readers in general to reflect on the extent to which genes determine whether we are healthy or diseased, our identities as persons, the quality of our lives, and our moral obligations to future generations of people. (shrink)

What motives underlie the ways humans interact socially? Are these the same for all societies? Are these part of our nature, or influenced by our environments?Over the last decade, research in experimental economics has emphatically falsified the textbook representation of Homo economicus. Literally hundreds of experiments suggest that people care not only about their own material payoffs, but also about such things as fairness, equity and reciprocity. However, this research left fundamental questions unanswered: Are such social preferences stable components of (...) human nature; or, are they modulated by economic, social and cultural environments? Until now, experimental research could not address this question because virtually all subjects had been university students, and while there are cultural differences among student populations throughout the world, these differences are small compared to the full range of human social and cultural environments. A vast amount of ethnographic and historical research suggests that people's motives are influenced by economic, social, and cultural environments, yet such methods can only yield circumstantial evidence about human motives. Combining ethnographic and experimental approaches to fill this gap, this book breaks new ground in reporting the results of a large cross-cultural study aimed at determining the sources of social preferences that underlie the diversity of human sociality. The same experiments which provided evidence for social preferences among university students were performed in fifteen small-scale societies exhibiting a wide variety of social, economic and cultural conditions by experienced field researchers who had also done long-term ethnographic field work in these societies. The findings of these experiments demonstrated that no society in which experimental behaviour is consistent with the canonical model of self-interest. Indeed, results showed that the variation in behaviour is far greater than previously thought, and that the differences between societies in market integration and the importance of cooperation explain a substantial portion of this variation, which individual-level economic and demographic variables could not. Finally, the extent to which experimental play mirrors patterns of interaction found in everyday life is traced.The book starts with a succinct but substantive introduction to the use of game theory as an analytical tool and its use in the social sciences for the rigorous testing of hypotheses about fundamental aspects of social behaviour outside artificially constructed laboratories. The results of the fifteen case studies are summarized in a suggestive chapter about the scope of the project. (shrink)

Advances in understanding genetic disorders have been rapid in the last few years and with them the need and desire for genetic counselling have grown. Almost simultaneously, particularly in the USA, several large screening programmes have been initiated to screen large numbers of people who may be carriers of such deleterious genes as those of Tay-Sachs disease and sickle cell anaemia. The authors of this paper, clinical medical students at University College Hospital, London, spent some time studying the ethical issues (...) raised. The first part of their study, which is not published here, relates to the biochemistry of certain genetic disorders, so leading up to the aspect of the subject which must concern readers of this journal, genetic counselling. At present genetic counselling is generally the province of the medical practitioner working with clinical biochemists, and in this paper their function is described and how programmes of screening for carriers are designed. Whether the subjects of the screening tests are found to be 'innocent' or 'guilty' psychological problems confront them, and of these the genetic counsellor must be aware. In fact the range of ethical problems raised by such counselling is wide and can only be sketched in this article. (shrink)

Core sustainability issues concerning the governance of seeds revolve around knowledge aspects, such as intellectual property rights over genetic information or the role of traditional knowledge in plant breeding, seed production and seed use. While the importance of knowledge management for efficient and equitable seed governance has been emphasized in the scientific discourse on Seed Commons, knowledge aspects have not yet been comprehensively studied. With this paper, we aim to (i) to analyze the governance of knowledge aspects in both global (...) and local/regional Seed Commons, (ii) to highlight disconnections in knowledge governance between the local Seed Commons and global governance of plant genetic resources, and (iii) to investigate the contribution of knowledge commoning to environmentally sustainable and culturally adapted food systems. For this purpose, we will analyze knowledge governance by the International Seed Treaty (ITPGRFA) and by two local Seed Commons, a Philippine farmer-led network and a German organic-breeding association. We take the analytical lens of commoning, focusing on social practices rather than specific resources. The main challenges include finding institutional arrangements, which fruitfully integrate aspects from both traditional and scientific knowledge systems, taking into account the complex interrelation between knowledge-related, material and cultural aspects of seeds. (shrink)

During the 1920s and 1930s geneticist L. C. Dunn of Columbia University cautioned Americans against endorsing eugenic policies and called attention to eugenicists' less than rigorous practices. Then, from the mid-1940s to early 1950s he attacked scientific racism and Nazi Rassenhygiene by co-authoring Heredity, Race and Society with Theodosius Dobzhansky and collaborating with members of UNESCO on their international campaign against racism. Even though shaking the foundations of scientific discrimination was Dunn's primary concern during the interwar and post-World War II (...) years, his campaigns had ancillary consequences for the discipline. He contributed to the professionalization of genetics during the 1920s and 1930s and sought respectability for human genetics in the 1940s and 1950s. My article aims to elucidate the activist scientist's role in undermining scientific discrimination by exploring aspects of Dunn's scientific work and political activism from the 1920s to 1950s. Definitions are provided for scientific discrimination and activist scientist. (shrink)

This book highlights both the relation between technology and care, and the normative aspects of economic analyses in health care. A series of concrete examples from various clinical fields (prenatal diagnosis, genetic tests, digital imaging in psychiatry, tube feeding in care for the elderly, and palliative sedation) helps the authors to consider how to integrate these technologies in a care context aimed upon humaneness. Each topic is analysed by leading European clinicians and health care ethicists.

This feels like a time of environmental and moral crisis without parallel.... Not only do human beings seem not to believe in anything but, despite exponential advances in information production, we do not appear to know much either. This book is a guide for everyone who feels understandably perplexed. The book considers issues as diverse as: the lure of alternative religions and belief systems; the use of the rhetoric of economics to justify amoral decisionmaking; green politics and genetically-modified crops; (...) new technology's power to preserve the status quo; and the true impetus behind the Human Genome Project. Presenting an explanation of recent findings in science and their relationship with society and politics, the book seeks to give guidance towards responsible political action. Starting from themes developed in the companion volume The Search for Mind, the author attempts to provide intellectual roots for the 'anti-capitalist' or 'anti-globalization' movement and, in particular, treats social protest as a form of knowledge-seeking. The author brings to very topical and controversial concerns some much-needed clarity. Complete with reader-friendly summaries of current thought in the biological, physical, and social sciences, this book is designed primarily for the popular market but will also appeal to those working or studying in these fields. (shrink)

Feminism offers three separate but equally important insights about human genetics and the new reproductive technologies. First, feminism is concerned with ways in which these new technologies have the potential to exploit women, particularly in the treatment of their reproductive tissue, while seeming to offer both sexes greater reproductive freedom. This risk has been largely ignored by much bioethics, which has concentrated on choice and autonomy at the expense of justice, giving it little to say about the concept (...) of exploitation. Second, feminist scholars have developed complex and subtle analyses of how women's labour is incorporated into the global bioeconomy in a gendered manner. Although feminist perspectives vary on such issues as surrogate motherhood, they have provided important studies of how women's labour is commodified in the new reproductive technologies. Finally, feminist analysts and activists have been among the leaders in identifying and resisting the threats from commodification and commercialisation in genetic research and patenting, which often affect women disproportionately. In all three areas, feminist writers have drawn specific attention to medical, economic and political impacts on women that had not been adequately considered. (shrink)

Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity, adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, so as (...) to enable research subjects to claim a share of the benefits to be negotiated on a case-by-case basis. Our conclusion on this question is: 'No, the CBD should not be expanded to include human genetic resources.' There are essential differences between human and non-human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity. When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as 'window dressing'. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization's Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed. (shrink)

SummaryCertain revolutionary changes in medicine—measurement, chemistry, genetics—have led to recasting both the criteriology and the conceptualization of the terms of discourse. But advances along this path rest no longer on naive observation but intimately and inextricably involve modeling, that is, a system of inference which derives no immediate warrant from the primordial data of the senses. This system is not totally new in quality, since all “fact” involves interpretation of data; nor is it entirely new in having heuristic value (...) in unearthing, or calling attention to, unsuspected evidence. But it differs in two major respects. First, it requires patterns of surmise which can no longer be immediately corroborated at all stages by naive means but rest more and more on internal theoretical consistency and confirmatory predictions to be verified by other sophisticated and indirect means. Second, it is leading to fundamental upheavals in even the broad perception of human biology, undermining well-established groupings and exposing certain classical fields of inquiry as meaningless. The problem yet to be confronted in this field is how an epistemology of the model (in this sense) is to be constructed. The model is useless (as the whole scientific endeavor is useless) if it has not a more economical structure than the totality of the raw data, even if the success of this economy is in some degree factitious (“robustness”). On the other hand, the model is also useless unless it has heuristic value and helps in adjudicating among competing interpretations (“power”). A good model will help also to distinguish relevant aspects of the data from the irrelevancies ascribed to error. The paradigmatic function of the model, then, defines certain “sufficient statistics” which condense the relevant features of the data. In fact a close analogy can be developed between the methodology of statistical inference and nosology. Both are necessarily tentative, and healthy development of both, in practice, is iterative; that is, the evidence and the model are mutually correcting and lead to advancement one of another. (shrink)

Cet ouvrage porte sur les transformations du droit de la propriété intellectuelle intervenus au cours des vingt dernières années dans le contexte de développement rapide des recherches sur les gènes et de quête d'innovations biotechnologiques appliquées à la médecine. L'apparition des brevets sur les gènes humains témoigne d’un puissant mouvement de marchandisation des connaissances. Celui-ci a pour base un déplacement important des équilibres entre science et technologie, entre le système de recherche public fonctionnant selon un régime de 'science ouverte', et (...) la recherche industrielle et privée fonctionnant selon un régime de réservation et d’appropriation des connaissances. La forme privilégiée prise par ce processus est le développement d’un secteur 'mixte' - un marché de la recherche de base sur lequel opèrent start-ups et gestionnaires de capital risque. Nous entrons dans l'ère post-industrielle - aux côtés de l’économie de l'information se dessine une économie de la connaissance qui propulse la recherche fondamentale dans la sphère marchande. Cette mutation s'accompagne d'un remaniement des concepts juridiques à l'aune d'une politique scientifique fondée sur la concurrence et la rentabilisation des coûts. La recherche en génétique est sans doute le domaine où s'exposent le plus clairement les interactions droit-économie induites par cette nouvelle donne. En effet, se constitue autour de la connaissance sur le gène humain devenue marchandise, un secteur aux allures d’ordre scientifico-concurrentiel. Le droit est partie prenante de cette évolution puisqu'il offre au secteur émergent tous les outils juridiques nécessaires à son développement. Cette étude présente les risques liés à cet état du droit - atteintes à la liberté de la recherche, appropriation de la connaissance, abandon d’une conception du droit comme lieu indépendant et maître de l'intérêt général au profit d'une attitude de suivisme et de gestion purement pratique des usages dominants. La vision transdisciplinaire ici offerte dépouille le débat des entraves idéologiques et des faux-semblants qui l’obèrent sur le plan scientifique, éthique, politique et même économique. En proposant une alternative, par la mise en place d'une autorité de régulation, à l’économisme ambiant, sans tomber dans le refus éthique catégorique, l’ouvrage invite scientifiques et juristes à poursuivre un travail d’imagination plus novateur dans le but de préserver le développement des sciences du vivant, spécialement du vivant humain, dans le respect de l'Homme. (shrink)

Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries were collected as part of a European Research Project examining human and non-human biobanking. A total of 147 institutions concerned with biobanking of human samples and data (...) were investigated by questionnaires and interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised. Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project. (shrink)

Genetics is a biomedical science that investigates heredity, variability, occurrence of genetic diseases and their prevention. Genetic science has many fields of science, which deal with different genetic processes, methods, aspects and fields of application. The genetic research in Europe related to the individual as the main subject of the research is exposed to a wide range of ethical and legal issues. From the developments in genetic science other sciences have evolved, thanks to which the modern world is able (...) to protect the genetic information of data, and to receive the sanction while ignoring the laws of such data. However, many problems still persist in the field of protection of personal genetic information, such as regulatory standards, the inviolability of an individual, the assurance of freedom and privacy of information. This manuscript attempts to reveal the main aspects of genetic human data protection, to research conduct regulations, ethics and issues related to the protection of individuals, such as protection of privacy, discrimination, confidentiality, etc. The article mainly focuses on the Conventions and Protocols elaborated by the Council of Europe because of its role in bioethics and focus on human rights. The author examined the documents such as the Convention on Human Rights and Biomedicine, the Additional Protocol to the Convention on Human Rights and Biomedicine concerning Biomedical Research, Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data and others. Genetic discrimination is strictly forbidden by international conventions and declarations, which means that discrimination on the grounds of personal genetic information (diseases, abnormalities) is not possible in all areas, including employment and insurance. However, individuals face some problems in getting a job due to the publicity and information disclosure to their employers, or in increasing the amount of insurance premiums. However, the disclosure of genetic information may have relevant, statutory consequences and the victims may apply to court for defending these rights. It is essential to protect genetic rights, as any form of discrimination against a person on the grounds of their genetic heritage is prohibited and intervention in the health field or disclosure of such information is only possible after the person concerned has given their free and informed consent. (shrink)

Today it is possible to screen for mutated DNA sequences which do not induce any diseases but predispose to develop diseases under certain environmental condition. These latter disorders are called multifactorial since they result from the interplay of genetic and environmental factors. Among multifactorial disorders there are job-related diseases whose genetic component can be identified by genetic screening tests. The use of these tests to predict occupational disorders, to cut down on them, and to save costs—in particular for absenteeism, health (...) care, and lawsuits—is of interest to employers and insurers. As for employees, it could entail an extremely deep invasion of privacy, economic problems and, very likely, a jeopardy of the present position of the individual who may be screened even if his/her potential disease is never developed. (shrink)

Human rights legislation pertaining to applications of human genetic science is still lacking at an international level. Three international human rights documents now serve as guidelines for countries wishing to develop such legislation. These were drafted and adopted by the United Nations Educational, Scientific and Cultural Organization, the Human Genome Organization, and the Council of Europe. It is critically important that the international nursing community makes known its philosophy and practice-based knowledge relating to ethics and (...) class='Hi'>human rights, and contributes to the globalization of genetics. Nurses have particular expertise because they serve in a unique role at grass roots level to mediate between genetic science and its application to public health policies and medical interventions. As a result, nurses worldwide need to focus a constant eye on human rights ideals and interpret these within social, cultural, economic and political contexts at national and local levels. The purpose of this article is to clarify and legitimate the need for an international declaration on nursing, human rights, human genetics and public health policy. Because nurses around the world are the professional workforce by which genetic health care services and genetic research protocols will be delivered in the twenty-first century, members of the discipline of nursing need to think globally while acting locally. Above all other disciplines involved in genetics, nursing is in a good position to articulate an expanded theory of ethics beyond the principled approach of biomedical ethics. Nursing is sensitive to cultural diversity and community values; it is sympathetic to and can introduce an ethic of caring and relational ethics that listen to and accommodate the needs of local people and their requirements for public health. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.1 (2002) 103-113 [Access article in PDF] Scope Note Update Searching Across Boundaries: National Information Resource on Ethics and Human Genetics* While indeed an historical moment, the announcement of the mapping of the human genome has been treated in the literature as a beginning—a new way to think about biology and the ways in which biological concepts are applied to medicine. (...) Issues of both Science and Nature magazines celebrated the event by establishing interdisciplinary websites where readers can access essays on aspects of genome mapping and directly link to databases to search for more information on the topics (IV. Genome Gateway 2001; The Human Genome 2001). Since 1994, the National Information Resource on Ethics and Human Genetics (NIREHG), a special project of the National Reference Center for Bioethics Literature (NRC), has been providing such an integrated information service on ethics and genetics. Designed to enable a wide range of users to go from annotated bibliographies (Scope Notes) and brief essays (called "enotes") to database searching, NIREHG fosters an interdisciplinary approach to research on ethics and genetics. Links are provided between and among Scope Notes and enotes to information maintained on the NIREHG site as well as to sources found throughout the Internet. In providing the following annotations added to NIREHG materials since 1997, the Kennedy Institute of Ethics Journal (in its online presence through Project Muse) becomes an additional forum for NIREHG links. "It is a rare and wonderful moment when success teaches us humility, and this, I argue, is precisely the moment at which we find ourselves at the end of the twentieth century" (IV. Keller 2000, p. 7). It is with both joy and humility that we celebrate the mapping of the human genome. [End Page 103] I. Genetic Testing Andrews, Lori B. Future Perfect: Confronting Decisions About Genetics. New York: Columbia University Press, 2001. 264 p.Noting the wide impact of genetic testing, Andrews discusses patient self concept, reproduction decisions, confidentiality, discriminations in health insurance and employment, the need for competent counseling, and the legal, ethical, and social regulations she deems important to help solve dilemmas arising from the tests and their ensuing ramifications. She describes three models, pointing out both advantages and problems: a medical model with physician gatekeepers, a public health model that could provide education as well some testing for those unable to afford tests, and a fundamental rights model that could give greater weight to individuals decisions about the use of health care services. The book has 85 pages of footnotes.American Society of Human Genetics. Social Issues Subcommittee on Familial Disclosure. Professional Disclosure of Familial Genetic Information. American Journal of Human Genetics 62 (2): 474-83, February 1998.The ASHG statement outlines points to consider: the general rule of confidentiality, exceptional circumstances that permit disclosure, and the ethical duty to inform patients about familial implications. Background discussion includes: ethical frameworks for disclosure of otherwise confidential information, the duty to warn under law, and international trends and positions.Boetzkes, Elisabeth. Genetic Knowledge and Third-Party Interests. Cambridge Quarterly of Healthcare Ethics 8 (4): 386-92, Summer 1999.Protection from the interests of insurers or prospective employers are discussed from the point of view of the ethical basis of the professional obligation to confidentiality as well as the right to privacy of those tested. However, the author supports family members, saying that "first-party resistance to disclosure may be overcome by weighty third-party claims."Chadwick, Ruth; Shickle, Darren; ten Have, Henk; and Wiesing, Urban, eds. The Ethics of Genetic Screening. Dordrecht, The Netherlands: Kluwer Academic Publishers, 1999. 255 p.Twenty-one chapters and 23 authors provide views of genetic testing/screening in different European countries and offer brief discussions of sociological perspectives, moral and philosophical issues, privacy, reconciling liberty and the common good, and questions raised in genetic testing of children.Clayton, Ellen Wright. Genetic Testing in Children. Journal of Medicine and Philosophy 22 (3): 233-51, June 1997.Clayton argues that there is room for... (shrink)

Economics plays a key role in human rights issues as decision-makers weigh the incentives associated with choosing how to use scarce resources in the context of committing or escaping human rights violence. This textbook provides an introduction to the microeconomic analysis of human rights utilizing economics as a lens through which to examine social topics including capital punishment, violence against women, asylum seeking, terrorism, child abuse, genocide, and hate. Whether analyzing the decisions made in capital punishment cases, (...) the causes and consequences of genocide, or the impact of terrorist acts on domestic and international decision-making, the science of economics provides tools and a systematic method of analysis and policy recommendation. This key text presents a method for integrating the social sciences of economics and human rights to create new opportunities for the investigation of social issues. Within each chapter, readers gain a fundamental understanding of a specific human rights issue, the decision-makers and the decision-making process involved, and the benefits and costs leading to the decisions. Experts on each issue, drawn from a variety of fields, contribute to each chapter and present first-hand accounts and different perspectives on each issue. The detailed analyses and accounts provided also explore the potential incentives involved in the prevention and termination of human rights violations. Aiming to further economic inquiry and enhance interdisciplinary research, this textbook serves as a multi-purpose guide for a range of readers. Students, researchers, and educators, as well as those working in organizations supporting victims of human rights violations and policy-makers facing human rights challenges, will find this book informative and engaging. (shrink)

Current research on the human genome holds enormous long-term promise for improvements in health care, but it poses an immediate ethical challenge in the area of health insurance, by raising the question of whether insurers should be allowed to take genetic information about customers into account in the setting of premiums. It is widely held that such discrimination is immoral and ought to be illegal, and the prevalence of this view is understandable, given the widespread belief, which I endorse, (...) that every individual in a society as affluent as ours has a basic right to affordable health care. But prohibiting genetic discrimination in health insurance is not an effective way to protect this right. On the contrary, I argue that because of the nature of insurance as a product sold in a competitive market, such a prohibition is misguided, and its worthy aims must, instead, be pursued through reforms in our country’s system of publicly provided health care. (shrink)

Introduction. The article raises the problem of eugenics as a direction of scientific thought and practice of improving the human species. The modern advances in reproductive medicine, the development of biology, the emergence of methods for editing the human genome have updated the debate around eugenics. The aim of the work is a comprehensive study of the discourse and practice of eugenics in the period of the 19th — 21st centuries. This aim involves solving a number of tasks: (...) 1) analysis of the historical context and prerequisites for the eugenics emergence; 2) the study of the institutionalization and practical implementation of its ideas in Western countries in the period until the end of World War II; 3) research on the position of eugenics after the war and the transition of discussions to the mainstream of genetics, bioethics, transhumanism; 4) study of the modern discourse of eugenics, ethical issues and the degree of government intervention in population reproduction. Methods. The author uses the historical-retrospective method, which makes it possible to comprehensively consider the context of the emergence and development of eugenics, the comparative method (when comparing the characteristic features of the «old» (authoritarian, forced) and «new» (democratic, based on personal choice) eugenics), the institutional approach ( when identifying the main institutions involved in the development, dissemination, implementation of the ideas of eugenics) and a discursive approach (to study modern discussions about the «new» eugenics and related ethical problems). Scientific novelty of the research. A comprehensive study of eugenics has been carried out, a connection has been established between the «old» and «new» eugenics, and their similarities and differences have been investigated. Results. The need to distinguish eugenics as a theory of human selection and as a practice has been proven, and the latter, depending on the political, cultural and socio-economic situation in the country, can take a variety of forms: from counseling and preventive measures to racial cleansing. It was found that population growth, urbanization, mass migration, instability in society, combined with the ideas of modernism about social order by the forces of science and technology, contributed to the spread of eugenics ideas in the late 19th - early 20th centuries. After the Nuremberg trials, the concept under study temporarily dropped out of scientific discourse. The article examines in detail the socio-economic and other preconditions that contributed to the revival of interest in eugenics in the 60s of XX century and at the present stage. It is shown that today part of the discussion has shifted to the mainstream of genetics, bioethics and transhumanism. Conclusions. It has been established that discussions about eugenics run up against the problem of breeding control, which means that they raise the question of who should perform selection, how, what are its criteria. The ethical aspects of introducing control are complicated by the fact that perceptions of the «norm» and the degree of permitted interference depend on the particular society. (shrink)

As our scientific and technical abilities expand at breathtaking speeds, concern that modern genetics and bioengineering are leading us to a posthuman future is growing. Is Human Nature Obsolete? poses the overarching question of what it is to be human against the background of these current advances in biotechnology. Its perspective is philosophical and interdisciplinary rather than technical; the focus is on questions of fundamental ontological importance rather than the specifics of medical or scientific practice.The authors -- (...) all distinguished scholars in their fields -- take on questions about technology's goals and values that are often ignored or sidelined in the face of rapid scientific advances and the highly specialized nature of technical knowledge. The essays included represent a rich variety of thought, ranging from finely nuanced philosophical and theological arguments to historical studies and cultural commentaries. Several explore the historical background of today's biotechnology: Timothy Casey traces such developments as the emergence of cybernetic humanity from Cartesian dualism, and Diane Paul presents the history of "positive" versus coerced eugenics. Jean Bethke Elshtain discusses cloning as a "messianic project" to perfect the body and exclude natural diversity -- giving as an example the elimination of Down Syndrome as an acceptable human type -- while Harold Baillie calls for an examination of the metaphysical roots of personhood. Robert Proctor finds no evidence in paleontology for any "essence of humanity," and Tom Shannon argues against materialist reductionism. Addressing social concerns, Lisa Sowle Cahill finds the possibility of a political solution to the problems raised by genetic engineering in Catholic teachings on social justice, and Langdon Winner looks critically at the "scientific enthusiasts of a posthuman future." Taken as a whole, the book provides a humanistic overview of a subject too often considered only in its technological aspect. (shrink)

Building on a theory of human intelligence, this book explores the importance of - and limits of - cost/benefit calculus (safety first in hostile environment), on the evolution of economic activity and political discourse. Arguing that intelligence consists of wisdom, cost/benefit reasoning, and creative genius, the book explores the history of the world from hunting and gathering to modern times, drawing on art, literature and invention. It emphasizes ethics, expectations and the importance of historical experience in shaping the (...) humanist economics story. (shrink)

The alleged threats to human nature are at the root of many concerns about the use of nanotechnology to extend human health and capabilities. Bu the concept of human nature is illusory, selectively deployed, and does not impose any ethical constraint on human enhancement. Human nature is not only a meaningless concept, a product of our imperfect human cognition and a relic of the idea of a "soul," but, as it is deployed today against (...) human enhancement technologies, it is also a morally offensive, racist concept. The "human-racists" who deploy the concept of human nature are more inclusive than their forebears, but the make the same mistake of tying citizenship and value to biology. By setting aside the concept of human nature, we can affirm the value of the myriad aspects of human existence that we wish to preserve and extend using human enhancement technologies, including whatever genetic capacities and limits we may discover. Human enhancement technologies, such as those that may be enabled by nanotechnology and genetic engineering, enable us to define a new and more dynamic set of human capabilities, and to better achieve many moral virtues, regardless of whether they are part of "human nature" or not. (shrink)

The article highlights the issues of modeling processes of a socio-economic nature, considers the problems and reveals the factors influencing the construction of the model algorithm. In our opinion, studies of economic processes undoubtedly affect the social side of the development of the territory. The scientific novelty lies in the development and testing of new approaches to the construction of a model that allows us to systematically characterize the processes taking place, based on the analysis of the whole, (...) territorial development, in relation to the structure of its parts, including human capital, which will make it possible to create a mechanism that ensures maneuverability in order to effectively use the potential of the region. As a result, an assessment of the current state of affairs for a certain subject of the Russian Federation is given, but some aspects touched upon in the study require an additional information block. The considered structural factors are determined in the share influence, which allows us to conclude about the regulation of processes with external and internal influence. (shrink)

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy and (...) quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics. (shrink)

Many of the existing ethical analyses of genetic engineering technologies (GET) focus on how they can be used to enhance individuals—to improve individual well-being, health and cognition. There is a gap in the current literature about the specific ways enhancement technologies could be used to improve our populations and species, viewed as a whole. In this paper, I explore how GET may be used to enhance the species through improvements in the gene pool. I argue one aspect of the species (...) that may be desirable to enhance is ‘persistence’ or long-term viability. I then look at some of the ways in which GET could be used to improve human persistence and argue that the use of GET to secure benefits for individuals may compromise persistence. This suggests conflicts between uses of GET to enhance individuals and uses to promote the persistence of the species may occur. As GET are further developed, the likelihood that these conflicts will actually arise, and how we should resolve them if they do, will need to be considered. (shrink)