La obra recoge, desde una perspectiva interdisciplinar, las aportaciones de un grupo de investigadores españoles e italianos que han trabajado conjuntamente durante varios años en distintas cuestiones en torno a las posibilidades y riesgos de los avances biotecnológicos y su incidencia en el campo de los derechos humanos. Los estudios y debates se han realizado en el marco del programa de doctorado internacional sobre "Derechos humanos: Problemas actuales" encabezado por las Universidades de Valencia y Palermo. El Profesor Jesús Ballesteros, Catedrático (...) de Filosofía del Derecho en la Universidad de Valencia, ha sido el encargado de dirigir y coordinar este proyecto. (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.

Machine generated contents note: 1. Seven ways of making people better; 2. Rational approaches to the genetic challenge; 3. The best babies and parental responsibility; 4. Deaf embryos, morality, and the law; 5. Saviour siblings and treating people as a means; 6. Reproductive cloning and designing human beings; 7. Embryonic stem cells, vulnerability, and sanctity; 8. Gene therapies, hopes, and fears; 9. Considerable life extension and the meaning of life; 10. Taking the genetic challenge rationally.

Several authors have suggested that we cannot fully grapple with the ethics of human enhancement unless we address neglected questions about our place in the world, questions that verge on theology but can be pursued independently of religion. A prominent example is Michael Sandel, who argues that the deepest objection to enhancement is that it expresses a Promethean drive to mastery which deprives us of openness to the unbidden and leaves us with nothing to affirm outside our own wills. Sandel's (...) argument against enhancement has been criticized, but his claims about mastery and the unbidden, and their relation to religion, have not yet received sufficient attention. I argue that Sandel misunderstands the notions of mastery and the unbidden and their significance. Once these notions are properly understood, they have surprising implications. It turns out that the value of openness to the unbidden is not just independent of theism, as Sandel claims, but is in fact not even fully compatible with it. But in any case that value cannot support Sandel's objection to enhancement. This is because it is not enhancement but certain forms of opposition to enhancement that are most likely to express a pernicious drive to mastery. (shrink)

Uniquely, this book also looks at the potential for 'horizontal' development of ABS law and policy, applying lessons from bilateral approaches to other national ...

This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns.

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)

Taiwan has a population of 23 million, of which some 500,000 are Aborigines. Recent conflicts over a national biobank as part of Taiwan's biotechnological industrial development, genetic research on Aboriginal origins, and commercialization of research findings involving Aborigines have raised a number of important ethical conflicts. These ethical conflicts involve on one hand, the importance of researchers' duties, and on the other hand, Aboriginal rights. This paper will go in three steps. First, this paper describes the three cases of ethical (...) violations of Aboriginal rights committed by Taiwanese researchers in the course of their scientific duties. After having given an account of ethical conflicts between research duties and Aboriginal rights, the paper addresses larger ethical issues underlying this Taiwanese research context. Finally, the paper considers if stronger ethical regulation could reconcile Aboriginal rights and research duties. (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)

: This essay examines the possible systematic bias against the disabled in the structure and practice of genetic counseling. Finding that the profession's "nondirective" imperative remains problematic, the authors recommend that methodology developed by feminist standpoint epistemology be used to incorporate the perspective of disabled individuals in genetic counselors' education and practice, thereby reforming society's view of the disabled and preventing possible negative effects of genetic counseling on the self-concept and material circumstance of disabled individuals.

The production of genetic knowledge -- Scientific and economic strength of genetic reductionism -- Policy implications : discourses of genetic enlightenment as new disciplinary devices -- Genetic conceptualizations of normality and the idea of genetic justice -- Beyond genetic universality and authenticity, the lure of the genetic underclass -- Previews of the future as background -- Economic and actuarial perspective on genetics and insurance -- Practical and normative arguments against genetic exceptionalist legislation -- The changing social role of private insurance (...) : risk as a new representational regime. (shrink)

This volume investigates human genetic biobanking and its regulation in various Asian countries and areas, including Japan, Mainland China, Taiwan, Hong Kong, ...

I argue that the existence of sexual dimorphism poses a profound challenge to those philosophers who wish to deny the moral significance of the idea of ‘normal human capacities’ in debates about the ethics of human enhancement. The biological sex of a child will make a much greater difference to their life prospects than many of the genetic variations that the philosophical and bioethical literature has previously been concerned with. It seems, then, that bioethicists should have something to say about (...) the choice between a male and a female embryo. Either, 1) parents have reason to choose boys over girls; (2) parents have reason to choose girls over boys; or, (3) parents have neither reason to choose girls over boys nor reason to choose boys over girls. Embracing either of the first two alternatives has strongly counterintuitive – and arguably morally repugnant – consequences. To motivate the third option we must either make reference to the idea of ‘normal human capacities’ or argue that parents should consider the interests of society when thinking about what sort of children they should bring into the world – an implication that should be extremely controversial in debates about the ‘new eugenics’. I conclude, then, that the idea of ‘normal human capacities’ is properly crucial to reasoning about the ethics of shaping future persons. (shrink)

"There are two broad approaches to human flourishing. Monists think there is one best way for human lives to be, and that judgements about how good a given life is depend on how close it comes to this ideal. Monism will demand that enhancement technologies be used to create humans as close as possible to the ideal state. I described two monistic views in chapter 1. The Nazis would have proposed the list of characteristics for admission to the SS as (...) the universal template for enhancement technologies. Hedonistic utilitarianism is a less objectionable version of monism, according to which the best human life is one that contains as much pleasure and as little suffering as possible - but like Nazism, it leaves no room for meaningful choice about enhancement.". (shrink)

An accessible survey, this collection will enlighten historians of science, their students, practicing scientists, and anyone interested in the relationship ...

The history of eugenics is getting tricky. Once regarded as an initially idealistic concept that degenerated into the monstrous Nazi race hygiene project or into an American sterilization assault against the disadvantaged and racially “inferior”, eugenics was deemed to have died after the Second World War, utterly discredited by better biological science and more enlightened social ideas. However recent research has shown that eugenics was more variegated than once thought — there were leftist and “reform” eugenists as well as (...) “mainline” or reactionary eugenists, with dedicated opposition coming more from liberal and religious quarters. Ingrained into contemporary structures and social issues such as demography, welfare, race and gender, eugenics proved more resilient and widespread than previously thought. Historians were slow to recognize its pervasive influence in Scandinavia, Latin America and Asia, where local variants evolved as adaptations to local culture and conditions. And it has persisted to the present day. In welfarist Scandinavia, eugenics has been repackaged as reproductive autonomy or “medical” measures.1 In Communist China it is alive and well in sterilization programmes and the one baby policy.2 More than this, critics allege, it has been resurrected in the “new genetics” of recent times. Geneticists have historically been strong supporters of eugenics as a way of scientifically improving (now read “enhancing”) the genetic quality of the human race. As I have argued in another place, during the inter-war period they failed properly to scrutinize methodologies and data used to support sterilization of mental defectives,3 and it is contendable that social and ideological factors have continued to play a role — alongside epistemic factors associated with the expansion of genetic knowledge — in.. (shrink)

Proceedings of the Pittsburgh Workshop in History and Philosophy of Biology, Center for Philosophy of Science, University of Pittsburgh, March 23-24 2001 Session 1: Eugenics Narrative and Reproductive Engineering.

Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programs in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. This paper discusses genetic testing and screening within the framework of eugenics in the health care context of India. Observations are based on literature review and empirical research using qualitative methods. I distinguish ‘private’ from ‘public’ eugenics. I refer (...) to the practice of prenatal diagnosis as an aspect of private eugenics, when the initiative to test comes from the pregnant woman herself. Public eugenics involves testing initiated by the state or medical profession through (more or less) obligatory testing programmes. To illustrate these concepts I discuss the management of thalassaemia, which I see as an example of private eugenics that is moving into the sphere of public eugenics. I then discuss the recently launched newborn screening programme as an example of public eugenics. I use Foucault’s concepts of power and governmentality to explore the thin line separating individual choice and overt or covert coercion, and between private and public eugenics. We can expect that the use of genetic testing technology will have serious and far-reaching implications for cultural perceptions regarding health and disease and women’s experience of pregnancy, besides creating new ethical dilemmas and new professional and parental responsibilities. Therefore, culturally sensitive health literacy programmes to empower the public and sensitise professionals need attention. (shrink)

In this paper I begin by arguing that there are significant intellectual and normative continuities between pre-Victorian hereditarianism and later Victorian eugenical ideologies. Notions of mental heredity and of the dangers of transmitting hereditary 'taints' were already serious concerns among medical practitioners and laymen in the early nineteenth century. I then show how the Victorian period witnessed an increasing tendency for these traditional concerns about hereditary transmission and the integrity of bloodlines to be projected onto the level of national health. (...) Tracing the gradual emergence of eugenical thought, I also highlight some of the more fundamental social, political and intellectual factors that promoted this predilection for extrapolating from the individual lineage to the nation and race. In doing so I argue that fully fledged eugenical thought was always unlikely to emerge prior to the early Victorian period. However, I am also able to show that Francis Galton's 1865 eugenical proposals were far from innovative and that identifying him as the 'father' of the eugenics movement is highly misleading. (shrink)