Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation is severely flawed because of (...) the difficulty in distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test (conceivably for the same multifactorial disease) raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system. (shrink)

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in human genetics. (...) He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine. (shrink)

This book highlights some of the principles which should be considered by planners, legislative drafters, and policy-makers as they work to develop legal frameworks on access to genetic resources in their countries. Contextual information on the Convention on Biological Diversity and examples of how countries have approached the issue to date are provided.

La autora de esta obra desarrolla un estudio en el que se analizan los derechos del individuo en contraposición con los del profesional de las ciencias de la vida, parte de los preceptos de la bioética, que ofrece el sustento ético-teórico, y el Derecho, que constituye el sistema normativo. Contempla temas referentes a cuestiones bioéticas y jurídicas relacionadas con el tratamiento y manipulación del embrión, apropiación indebida de material genético, responsabilidad civil en la transmisión de enfermedades congénitas y genéticas derivadas (...) de la reproducción asistida, anencefalia, clonación, entre otros aspectos relacionados con el genoma humano. (shrink)

Traz os resultados das investigações levadas a efeito em função de alguns problemas centrais no campo da Bioética e Biodireito: clonagem, patenteamento genético, eutanásia, reprodução assistida e disposição do próprio corpo.

Der gentechnische Eingriff in das vererbbare menschliche Genom, der sogenannte Keimbahneingriff, ist heute noch nicht sicher praktizierbar. Fur die Zukunft verbinden sich mit der Methode gleichermassen Hoffnungen auf die Beseitigung von schweren Erbkrankheiten und Angste vor dem Einstieg in die gentechnische Menschenzucht. In Deutschland ist der Eingriff in die menschliche Keimbahn strafrechtlich verboten. Der Autor widmet sich zunachst der Frage, ob das Verbot unter rechtlichen und ethischen Aspekten auch dann noch aufrechterhalten bleiben sollte, wenn der technische Fortschritt dereinst die gezielte (...) Durchfuhrung von Keimbahneingriffen ermoglicht. Schwerpunkte dieser Untersuchung sind die im Grundgesetz geschutzte Menschenwurde und das -slippery-slope-- oder Dammbruch-Argument. Im weiteren stellt der Autor verschiedene Modelle zur Regelung von Keimbahneingriffen am Menschen auf nationaler und internationaler Ebene vor und erortert deren Vorzuge und Nachteile.". (shrink)

本书从基因技术所引发的法律问题着手,对基因权利、基因技术引发的生命安全等方面的法律问题进行了论析,并从部门法学的角度探讨了基因技术的民法、刑法、行政法及国际法调整。.

The ArgumentMuslims share with others both the interest in and the concern about genetic engineering. Naturally their reactions and views stem from general Islamic dogma and from Islamic medical ethics, but they are not unaware of Western scientific data. Particularly relevant is the Islamic religious prohibition against “changing what Allah has created.” Muslim muftis try to offer practical solutions for individuals. Islamic law is concerned about maintaining pure lineage. Consanguineous matings are very common, but induced abortions are usually (...) ruled out. Cloning has reawakened among Muslims an old debate over the positive as well as hazardous aspects of genetic engineering. (shrink)

Human genetic enhancement, examined from the standpoint of the new field of political bioethics, displaces the age-old question of truth: What is human nature? This book displaces that question with another: What kind of human nature should humans want to create for themselves? To answer that question, this book answers two others: What constraints should limit the applications of rapidly developing biotechnologies? What could possibly form the basis for corresponding public policy in a democratic society? Benjamin Gregg focuses on (...) the distinctly political dimensions of human nature, where politics refers to competition among competing values on which to base public policy, legislation, and political culture. This book offers citizens of democratic communities a broad perspective on how they together might best approach urgent questions of how to deal with the socially and morally challenging potential for human genetic engineering. (shrink)

Food labels legislated by the U.S. government have been designed to provide information to consumers. It has been asserted that the simple disclosures “produced using genetic engineering” on newly legislated U.S. food labels will send a signal that influences individual preferences rather than providing information. Vermont is the only US state to have experienced mandatory labeling of foods produced using genetic engineering via simple disclosures. Using a representative sample of adults who experienced Vermont’s mandatory GE labeling (...) policy, we examined whether GE labels were seen by consumers and whether the labels provided information or influenced preferences. Nearly one-third of respondents reported seeing a label. Higher income, younger consumers who search for information about GE were more likely to report seeing a label. We also estimated whether labels served as information cues that helped reveal consumer preferences through purchases, or whether labels served as a signal that influenced preferences and purchases. For 50.5% of consumers who saw a label, the label served as an information cue that revealed their preferences. For 13% of those who saw the label, the label influenced preferences and behavior. Overall, for 4% of the total sample, simple GE disclosures influenced preferences. For a slight majority of consumers who used a GE label, simple disclosures were an information signal and not a preference signal. Searching for GE information, classifying as female, older age and opposing GE in food production significantly increased the probability that GE labels served as an information source. Providing such disclosures to consumers may be the least complex and most transparent option for mandatory GE labeling. (shrink)

ABSTRACT The aim of this article is to determine whether genetic engineering is ever acceptable. The prominent arguments which have been put forward by the opponents of genetic engineering are examined and evaluated. The arguments ‘we should not interfere with nature’, ‘we should not alter the genetic constitution of organisms’, and ‘we should not alter the genetic constitution of organisms to this extent’are found to be inadequate as valid arguments against all genetic (...) class='Hi'>engineering. However, it remains a possibility that there is nothing intrinsically unethical about genetic engineering, but that the risks of misuse render the techniques ethically unacceptable. Since universal legislation is not possible, and the risks of genetic engineering are so real, this alone may be sufficient to dismiss all genetic engineering as wrong. (shrink)

Intrinsic value and animal integrity are two key concepts in the debate on the ethics of the genetic engineering of laboratory animals. These concepts have, on the one hand, a theoretical origin and are, on the other hand, based on the moral beliefs of people not directly involved in the genetic modification of animals. This ‘external’ origin raises the question whether these concepts need to be adjusted or extended when confronted with the moral experiences and opinions of (...) people directly involved in the creation or use of transgenic laboratory animals. To answer this question, 35 persons from the practice of biomedical research who are directly involved in genetic engineering (scientists, biotechnicians, animal caretakers and laboratory animal scientists) were interviewed. They were asked to give their moral opinion on different aspects of the genetic engineering of animals and to react to statements about the concepts of intrinsic value and animal integrity. Analysis of the interviews showed that, contrary to what is often assumed, the respondents embraced these concepts, even those senses that (more) specifically apply to genetic engineering. And although the respondents raised some objections that go beyond issues of animal welfare, these objections could quite well be expressed in terms of the concepts of intrinsic value and animal integrity. In short, the results of the present study strongly suggest that these concepts do not have to be adjusted or extended in the light of the moral experiences and opinions from practice. (shrink)

A Bioética, que podemos qualificar, sem a menor dúvida, como uma ciência jovem - embora cheia de vigor, dinamismo e em plena expansão - se ocupa, desde as multifacetadas óticas das grandes perguntas que se formula a cada dia, o homem moderno, em torno da vida. Neste livro, os autores tratam de alguns aspectos conceituais que, às vezes, são obliterados no discurso bioético. Por exemplo, quais as relações que se interpõem entre Bioética e Direito, começando por delimitar cada uma destas (...) disciplinas. (shrink)

Estuda de forma multidisciplinar a bioética e o biodireito, em face dos avanços provocados pela biotecnologia na área jurídica e metajurídica.

La contractualisation du vivant, tous règnes confondus, est aujourd'hui une réalité incontestable. Puisant ses racines dans la révolution scientifico-technique qui a constitué le vivant en réservoir de ressources biologiques exploitées à des fins diverses, le phénomène se matérialise par un foisonnement d'opérations dont le contrat est le maillon emblématique. Fondé sur l'analyse d'un corpus de quelque 120 contrats, l'ouvrage présente cette évolution selon une triple entrée. Une première partie brosse le contexte dans lequel se déploie la chaîne du vivant. Dans (...) une deuxième partie, les contrats sont analysés pour eux-mêmes, de façon technique. La troisième partie propose d'appréhender la contractualisation du vivant en termes de politique juridique. Trois constats ressortent de cette analyse. D'une part, la contractualisation contribue à uniformiser le vivant : il apparaît que par le prisme du contrat, les ressources biologiques végétales, animales et humaines sont, mutatis mutandis, l'objet d'opérations très similaires. D'autre part, et contre toute attente, les opérations scandant la circulation des ressources biologiques se coulent pour la plupart dans les catégories du droit des contrats, en dépit de l'irréductible spécificité de l'objet matériel, qui contraint souvent les parties à faire preuve d'inventivité dans l'élaboration de stipulations contractuelles adaptées à leurs besoins. Enfin, si originalité il y a, elle se manifeste tout particulièrement quand il s'agit de déterminer les enjeux de la contractualisation en termes de politique juridique, spécialement dans un domaine fortement empreint d'intérêt général. A cet égard, même si la loi demeure, à l'évidence, le cadre de référence obligé de la circulation des ressources biologiques, le contrat en apparaît comme un indispensable relais. (shrink)

Catherine Bachelard-Jobard a choisi une approche pluridisciplinaire afin de comprendre, sans aucun manichéisme, si notre société est réellement en marche vers l'eugénisme. En d'autres termes, sommes-nous en train de nous diriger vers un monde d'enfants parfaits procédant de la sélection pré-natale, décidée par les parents et autorisée par la loi? Les parents peuvent-ils encore choisir de mettre au monde un enfant différent? Enfin, les barrières posées par le législateur aux désirs individuels sont-elles suffisantes? C'est ce débat passionnant que l'auteur se (...) propose d'éclairer, à la lumière des origines historiques de ce problème, dans un ouvrage de référence. (shrink)

Avec l'arrivée dans les années 1990 du développement des OGM et de méthodes de séquençage de l'ADN, la question de la brevetabilité du vivant est devenue un débat d'ordre éthique majeur. Encore aujourd'hui, la possibilité de déposer des brevets dans le domaine des biotechnologies est un thème d'actualité. Face à la complexité d'un sujet peu ou mal connu du grand public, Pierre Sartor nous propose d'aborder avec clarté les différents domaines touchés par les brevets du vivant, afin d'en comprendre les (...) problématiques et les enjeux. Le droit, l'économie, l'éthique, les aspects sociétaux et écologiques y sont développés, exemples concrets à l'appui. (shrink)