To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which (...) they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues. (shrink)

Fornece um panorama sobre os avanços biotecnológicos, dando ênfase aos aspectos jurídicos e éticos do impacto destes na área genética sobre o homem e o meio ambiente.

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)

The governance of human (germline) genome modification at the international and transnational level -- The regulation of human germline genome modification in Canada (E Kleiderman) -- The regulation of human germline genome modification in the United States (Kerry Macintosh) -- The regulation of human germline genome modification in Mexico (M Medina Arellano) -- The regulation of human germline genome modification in Europe (J Almqvist, C Romano) -- The regulation of human germline genome modification in the United Kingdom (J Lawford Davies) (...) -- The regulation of human germline genome modification in Germany (T Faltus). (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.

For the first time in the history of civilization, humans have procured the power to rewrite nature's book of life. Following the discovery of CRISPR and other key scientific developments at the dawn of the twenty-first century, humankind has-for better or worse-reached the Rubicon of precise genetic manipulation, which existed only in science fiction until now. Those familiar with genome editing understand its colossal power and potential to become a global transformative agent that surpasses the impact of electricity, the (...) atomic bomb, or the Internet. REWRITING NATURE is an interdisciplinary odyssey through the law, science, and policy of genome editing-the most significant breakthrough of our generation. The volume addresses a critical need to bridge gaps between law, science, and policy, and challenges the conventional, false dichotomy frequently associated with mutually exclusive normative roles for science and law. Through exploration of heuristic inquiries into an array of interdisciplinary fields, the book seeks to ignite thoughtful dialogues about authentic-rather than manufactured or sensationalized-issues raised by the technology. This timely resource is intended for keen audiences focused on venturing beyond the headlines and talking points to develop a deeper understanding of the prospects and challenges of genome editing. (shrink)

Technologies like CRISPR and gene drives are ushering in a new era of genetic engineering, wherein the technical means to modify DNA are cheaper, faster, more accurate, more widely accessible, and with more far-reaching effects than ever before. These cutting-edge technologies raise legal, ethical, cultural, and ecological questions that are so broad and consequential for both human and other-than-human life that they can be difficult to grasp. What is clear, however, is that the power to directly alter not (...) just a singular form of life but also the genetics of entire species and thus the composition of ecosystems is currently both inadequately regulated and undertheorized. In Gene Editing, Law, and the Environment, distinguished scholars from law, the life sciences, philosophy, environmental studies, science and technology studies, animal health, and religious studies examine what is at stake with these new biotechnologies for life and law, both human and beyond. (shrink)

In March 1986, a public symposium took place in Heidelberg about the “unresolved potential dangers of genetic engineering”. The event was organized by institutions affiliated with the environmental movement. Choosing this symposium as an example, the article shows how the public appearance of scientists can be understood as a form of political activism. The article shows how specialists from fields as diverse as biology, chemistry, physics, law and political sciences tried to place political messages by putting themselves in (...) the limelight as independent scientists. I argue that the symposium was both: a place of science communication intertwined with political agitation that, as should be noted, happened in a time when the West German government was working on the legislation of genetic engineering, legitimated by relying on independent expertise. It can be concluded that the discourse of scientific independence became a strategic tool in the controversial debate about the uses and dangers of genetic engineering. Thus, it draws attention to a dimension of political-scientific activity which cannot be fully grasped by the concept of ‘the expert’ that is established in the history of science. (shrink)

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)

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)

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)

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)

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。.

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)

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)

The first IVF baby was born in the 1970s. Less than 20 years later, we had cloning and GM food, and information and communication technologies had transformed everyday life. In 2000, the human genome was sequenced. More recently, there has been much discussion of the economic and social benefits of nanotechnology, and synthetic biology has also been generating controversy. This important volume is a timely contribution to increasing calls for regulation - or better regulation - of these and other new (...) technologies. Drawing on an international team of legal scholars, it reviews and develops the role of human rights in the regulation of new technologies. Three controversies at the intersection between human rights and new technology are given particular attention. First, how the expansive application of human rights could contribute to the creation of a brave new world of choice, where human dignity is fundamentally compromised; second, how new technologies, and our regulatory responses to them, could be a threat to human rights; and, third, how human rights could be used to create better regulation of these technologies. (shrink)

Biomedical Science Law & Practice is a practical strategic guide to the management of legal risks in biomedical science transactions, and commercialization of innovation and technology through strategic intellectual property licensing. This book provides a concise introduction to strategic legal risk management issues and strategic value creation in the entire biomedical science value chain, including legal liability issues from R&D, clinical trials, production of devices and market roll-out, protection of innovation through intellectual property (patents, copyrights, trade marks and trade secrets); (...) and commercialization of biomedical science innovation through strategic licensing and technology transfer, including unique licensing arrangements relating to genome. Checklists, sample agreements and biomedical patents and real life and hypothetical case studies used in the book facilitate learning at the operational or technical level of execution. (shrink)

GMOS and Political Stance: Global GMO Regulation, Certification, Labeling, and Consumer Preferences provides a foundational-to-current challenges resource for those involved in developing and applying regulations to these important resources. Beginning with basics of GMOs, the book first familiarizes the reader with the history, economic status, associated risks, global politics, and socio-economics of GMOs. From exploring the necessity of GMO regulations with the existing GMO technology as well as new gene editing technologies to discussion by GMO regulations experts from different continents (...) and countries, readers will find the information necessary to understand the laws, rules, regulations and policies at domestic and international scale. A last chapter delivers an update and future look on gene-edited food and feed and discusses the possibilities on the future risk assessment, legislation and regulation of gene-edited products. GMOS and Political Stance provides a unique and applicable synchronization of all regulatory information on GMOs to facilitate effective and efficient regulatory development and adherence." -- Amazon. (shrink)

This volume examines the impact of advances in genetics and assisted reproduction technologies on family law, human rights and the rights of the child, ...

This edited collection examines the ethical, legal, social and policy implications of genome editing technologies. Moreover, it offers a broad spectrum of timely legal analysis related to bringing genome editing to the market and making it available to patients, including addressing genome editing technology regulation through procedures for regulatory approval, patent law and competition law. In twelve chapters, this volume offers persuasive arguments for justifying transformative regulatory interventions regarding human genome editing, as well as the various legal venues for introducing (...) necessary or desirable changes needed to create an environment for realizing the potential of genome editing technology for the benefit of patients and society. (shrink)