This volume investigates human genetic biobanking and its regulation in various Asian countries and areas, including Japan, Mainland China, Taiwan, Hong Kong, ...
In response to political pressures arising from controversial science policy decisions, the United Kingdom (UK) government conducted a review of its biotechnology governance framework in 1999, identifying best practices of open government and creating strategic bodies to adopt them. Drawing from empirical data on the context and nature of the open government framework, this paper argues that the framework may be interpreted as elasticizing objectivity. Value-neutral scientific objectivity is essentially 'stretched' into a pluralist objectivity that purports (...) to represent a spectrum of interests without privileging any, allowing the policy culture to retain its legitimating objectivity and authority. Governance implications of this analysis are discussed. (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)
As rapid advances in human genetic research are transferred into new areas of genetic technology, questions relatingto the use of these techniques will escalate. This paper examines some of the policy concerns surrounding recent developments in genetic screening. It discusses the impetus and implications of genetic screening in general, examines various applications, and analyzes the costs and benefits of screening programs currently in existence. Special emphasis is placed on whether or not screening should be considered a matter of (...) public health and mandated on those grounds. This paper argues against any compulsory screening programs except where the disease is easily identified, applicable across social groups, and treatable. While screening services for carriers of genetic disease and prenatal diagnosis should be made available and education programs should be expanded substantially, the burden of proof for involuntary programs is placed on the proponents. There is little public health justification at thb time for mandatory screening though this does not preclude future public health demands. It is argued that the goals and justification of various human genetic technologies must be examined at this time due to the rapid advancement of the research as well as the ultimate benefits promised for humankind. CiteULike Connotea Del.icio.us What's this? (shrink)
In this paper we will examine some ethical aspects of the role that computers and computing increasingly play in new genetics. Our claim is that there is no new genetics without computer science. Computer science is important for the new genetics on two levels:(1) from a theoretical perspective, and (2) from the point of view of geneticists practice. With respect to (1), the new genetics is fully impregnate with concepts that are basic for computer science. Regarding (...) (2), recent developments in the Human Genome Project (HGP) have shown that computers shape the practices of molecular genetics; an important example is the Shotgun Method's contribution to accelerating the mapping of the human genome. A new challenge to the HGP is provided by the Open Source Philosophy (I computer science), which is another way computer technologies now influence the shaping of public policy debates involving genomics. (shrink)
This article analogizes the state, in its role as tax collector, to that of an investor, or to be more precise, that of a residual claimant on the earnings of all of the people and firms subject to the taxing power of the state. The relationship between modern democracy and its citizens would be strengthened if this analogy were more widely acknowledged because it recognizes citizen-taxpayers as contracting partners with the state. Unlike other libertarian conceptions of the state's taxing authority, (...) the framework developed here does not jeopardize the state's ability to collect the revenues it needs to provide for the protections of its citizens. The state-as-investor framework developed in this Article leads to a number of tax policy improvements. The framework suggests limits on the government's ability to change people's tax status after they have already embarked on careers and made the sunken, non-diversifiable investments in human capital that such career training requires. The framework advanced here also suggests that people should be able to make a once-in-a lifetime payment in lieu of taxes to the state in order to discharge their tax liability. This approach articulated here also seems superior to the utopian suggestion offered by Ayn Rand that taxation be voluntary, as well as to the unrealistic suggestion made by Nozick that income taxes are violative of man's natural rights. (shrink)
This special issue of the Modern Law Review addresses a range of key issues - conceptual, ethical, political and practical - arising from the regulatory ...
For the first time in history, genetics will enable science to completely identify each human as genetically unique. Will this knowledge reinforce the trend for more individual liberties or will it create a ‘brave new world’? A law policy approach to the problems raised by the human genome project shows how far our democratic institutions are from being the proper forum to discuss such issues. Because of the fears and anxiety raised in the population, and also (...) because of its wide implications on the everyday life, the human genome analysis more than any other project needs to succeed in setting up such a social assessment. Keywords: human genome project, judiciary law policy, legislative activity, new ethics institutions, methodology in law reform, public debate, social consensus CiteULike Connotea Del.icio.us What's this? (shrink)
Mit Beitragen von: Wolfgang U. Eckart, Christian Bonah, Wolfgang U. Eckart / Andreas Reuland, Alexander Neumann, Peter Steinkamp, Volker Roelcke, Anne ...
This paper analyses whether the aggregation of individual happiness scores to a National Happiness Index can still be trusted once governments have proclaimed their main objective to be the pursuit—or even maximization—of this National Happiness Index. The answer to this investigation is clear-cut: as soon as the National Happiness Index has become a policy goal, it can no longer be trusted to reflect people’s true happiness. Rather, the Index will be systematically distorted due to the incentive for citizens to (...) answer strategically and the incentive for government to manipulate the Index in its favour. Such a distortion would arise even if the measurement of subjective well-being correctly reflected actual happiness before the intervention of government. Governments in a democracy should establish the conditions enabling individuals to become happy. The valuable and important results of happiness research should be introduced into the political process. Each person should be free to pursue happiness according to his or her preferences. This process is supported by obedience to the rule of law, human rights and free media, as well as by extended political participation rights, decentralized public decision-making, an open and effective education system fostering upward mobility and the possibility to find suitable employment. (shrink)
Large-scale transnational land acquisition of agricultural land in the global south by rich corporations or countries raises challenging normative questions. In this article, the author critically examines and advocates a human rights approach to these questions. Mutually reinforcing, policies, governance and practice promote equitable and secure land tenure that in turn, strengthens other human rights, such as to employment, livelihood and food. Human rights therefore provide standards for evaluating processes and outcomes of transnational land acquisitions and, thus, (...) for determining whether they are ethically unacceptable land grabs. A variety of recent policy initiatives on the issue have evoked human rights, most centrally through the consultation and negotiation of the Voluntary Guidelines on the Responsible Governance of Tenure of Land, Fisheries and Forests concluded in 2012. However, a case of transnational land appropriation illustrates weak host and investor state enforcement of human rights, leaving the parties to in interaction with local groups in charge of protecting human rights. Generally, we have so far seen limited direct application of human rights by states in their governance of transnational land acquisition. Normative responses to transnational land acquisition—codes of conduct, principles of responsible agricultural investment or voluntary guidelines—do not in themselves secure necessary action and change. Applying human rights approaches one must therefore also analyze the material conditions, power relations and political processes that determine whether and how women and men can secure the human rights accountability of the corporations and governments that promote large-scale, transnational land acquisition in the global south. (shrink)
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)
IRBs in action -- Everyone's an expert? Warrants for expertise -- Local precedents -- Documents and deliberations: an anticipatory perspective -- Setting IRBs in motion in Cold War America -- An ethics of place -- The many forms of consent -- Deflecting responsibility -- Conclusion: the making of ethical research.
There is an apparent gap between public policy on embryo research in the United Kingdom and its ostensible justification. The rationale is respect for the “special status” of the embryo, but the policy actively promotes research in which embryos are destroyed. Richard Harries argues that this is consistent because, the “special status” of the human embryo is less than the absolute status of persons. However, this intermediate moral status does no evident work in decisions relating to the (...)human embryo. Rather, public policy seems to be based on a different account of “special status”: that developed by Mary Warnock. According to this, the embryo has no inherent status and the language of “special status” serves rather to accommodate the feelings of those who object to embryo research. This “emotivist” account is highly problematic, not so much for its attitude to the embryo as for its subversion of public moral reasoning. (shrink)
There have been serious controversies in the latter part of the 20th century about the roles and functions of scientific and medical research. In whose interests are medical and biomedical experiments conducted and what are the ethical implications of experimentation on subjects unable to give competent consent? From the decades following the Second World War and calls for the global banning of medical research to the cautious return to the notion that in controlled circumstances, medical research on human subjects (...) is in the best interest of the given individual and the broader population, this book addresses the key implications of experimentation on humans. This volume covers major ethical themes within biomedical research providing historical, philosophical, legal and policy reflections on the literature and specific issues in the field of research on human subjects. Focusing on special populations (the elderly, children, prisoners and the cognitively impaired) it represents the most up-to-date review of the special ethical and legal conflicts that arise with relation to experimentation on subjects from these groups. In the light of current initiatives for law reform pertaining to research ethics the world over, this volume provides a timely, comprehensive and provocative exploration of the field. The volume has been carefully organized to present important philosophical perspectives on organizing principles that should underlie any practical application. A forward-looking historical review of the regulatory regimes of principal jurisdictions, including of the legal controls already in place, provides the backdrop for future policy initiatives. Additionally, in the light of global restructuring of health care systems, several chapters have been devoted to epidemiological research and related issues. (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 costsâin particular for absenteeism, health (...) care, and lawsuitsâis 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)
Current developments in biomedicine are presenting us with difficult ethical decisions and raising complex policy questions about how to regulate these new developments. Particularly vexing for governments have been issues related to human embryo experimentation. Because some of the most promising biomedical developments, such as stem cell research and nuclear somatic transfer, involve such experimentation, several international bodies have drafted documents aimed to provide guidance to governments when developing biomedical science policy. Here I focus on two such (...) documents: the Council of Europe's Convention for the Protection of Human Rights and Dignity of the Human Being and the Additional Protocol to the Convention for the Protection of Human Rights and Dignity of the Human Being.I argue that by using human dignity as a criterion to determine the permissibility of particular human embryo research practices, these documents cannot aid in identifying research that would be contrary to human dignity. Thus, they fail to guide public policy on embryo experimentation. Their use of human dignity as a criterion makes their task of offering guidance unfeasible because the concept as used in these documents is too vague and is applied in contradictory ways. I discuss the main goals of these documents and their claims in relation to human embryo research. I then discuss how they have influenced public policy in several countries. Finally, I show that although these Council of Europe treaties attempt to serve as public policy guides in the area of embryo research, they fail to do so. (shrink)
This article is the first in a two-part review of policy design for human embryo research in Canada. In this article we explain how this area of research is circumscribed by law promulgated by the federal Parliament (the Assisted Human Reproduction Act ) and by guidelines issued by the Tri-Agencies (the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans and Updated Guidelines for Human Pluripotent Stem Cell Research ). In so doing, we provide the (...) first comprehensive account of the rules currently governing human embryo research in Canada. In this article we also provide a chronological description of relevant policy initiatives and outcomes related to these policy instruments over the past 20 years, with particular attention to public involvement in policy design. This sets the stage for the second article (scheduled to appear in vol. 6 issue 3) in which we critically analyse the history of policy design for human embryo research in Canada, applying a typology of modes of public consultation developed by Eric Montpetit. Our goal is to carefully explain the various episodes of policy development and their corresponding outcomes, in order to more effectively address emerging questions about the legitimacy of future policy initiatives for human embryo research in Canada. (shrink)
Given current constraints on universal treatment campaigns, recent advances in public health prevention initiatives have revitalized efforts to stem the tide of HIV transmission. Yet, despite a growing imperative for prevention—supported by the promise of behavioral, structural and biomedical approaches to lower the incidence of HIV—human rights frameworks remain limited in addressing collective prevention policy through global health governance. Assessing the evolution of rights-based approaches to global HIV/AIDS policy, this review finds that human rights have shifted (...) from collective public health to individual treatment access. While the advent of the HIV/AIDS pandemic gave meaning to rights in framing global health policy, the application of rights in treatment access litigation came at the expense of public health prevention efforts. Where the human rights framework remains limited to individual rights enforced against a state duty bearer, such rights have faced constrained application in framing population-level policy to realize the public good of HIV prevention. Concluding that human rights frameworks must be developed to reflect the complementarity of individual treatment and collective prevention, this article conceptualizes collective rights to public health, structuring collective combination prevention to alleviate limitations on individual rights frameworks and frame rights-based global HIV/AIDS policy to assure research expansion, prevention access and health system integration. (shrink)
The release of the Final Report of the Lyons Inquiry into Local Government in England, entitled Place-shaping: A shared ambition for the future of local government (Lyons Inquiry into Local Government) was a significant milestone in the debate on local government reform. Place-shaping is a sophisticated piece of rhetoric and policy making and can be seen to have relevance far beyond its own jurisdiction. This paper traces its theoretical antecedents alongside developments in the debate on (...) local government in England. Despite its broad appeal, we argue that problems familiar to local government such as rent-seeking and cost shifting will be heightened rather than resolved with any take-up of the place-shaping agenda. (shrink)
This book explores international governance of the human genome from a human rights perspective and challenges paradigms of property that are entrenched in relevant international instruments.
New prospects for technologically aided human reproduction require the development of a public policy concerning the setting of limits to reproductive autonomy and to research on human embryos. Previous American efforts to clarify policy on such matters have been ignored by the executive branch; there is a need for Congressional action to initiate the requisite processes of debate and policy formation. Keywords: human reproduction, public policy, persons, in vitro fertilization, embryo transfer, reproductive autonomy (...) CiteULike Connotea Del.icio.us What's this? (shrink)
: Gill and Sade, in the preceding article in this issue of the Kennedy Institute of Ethics Journal, argue that living individuals should be free from legal constraints against selling their organs. The present commentary responds to several of their claims. It explains why an analogy between kidneys and blood fails; why, as a matter of public policy, we prohibit the sale of human solid organs, yet allow the sale of blood; and why their attack on Kant's putative (...) argument against the sale of human body parts is misplaced. Finally, it rejects the claim that the state is entitled to interfere with the actions of individuals only if such actions would harm others. We draw certain lines grounded in what Rawls has termed "public reason" beyond which we do not give effect to the autonomous self-regarding decisions of individuals. Public resistance to the sale of human body parts, no matter how voluntary or well informed, is grounded in the conviction that such a practice would diminish human dignity and our sense of solidarity. A system of organ donation, in contrast, conveys our respect for persons and honors our common humanity. (shrink)
Researchers are increasingly interested in creating chimeras by transplanting human embryonic stem cells (hESCs) into animals early in development. One concern is that such research could confer upon an animal the moral status of a normal human adult but then impermissibly fail to accord it the protections it merits in virtue of its enhanced moral status. Understanding the public policy implications of this ethical conclusion, though, is complicated by the fact that claims about moral status cannot play (...) an unfettered role in public policy. Arguments like those employed in the abortion debate for the conclusion that abortion should be legally permissible even if abortion is not morally permissible also support, to a more limited degree, a liberal policy on hESC research involving the creation of chimeras. (shrink)
This article assesses the usefulness of Thomas Risse, Stephen Ropp and Kathryn Sikkink's spiral model as an explanation of the changes in the Chinese government's human rights practices from the time of the 'anti-rightist' campaign in 1957-1958 to the end of 2003. It is concluded that the spiral model has provided a valid explanation for many of the changes in the Chinese government's human rights practices, and its responses to its internal and external critics, over this (...) time period. Many of the responses of the transnational human rights network and the Chinese government by the end of this period indicate that the latter had progressed to phase three of the model. It is also concluded that the spiral model only conceptualises part of the constitutive relationship between the target state and international human rights norms - the influence of these norms on the identities, interests and behaviours of a target state. It does not conceptualise the influence of a target state on international human rights norms or the transnational human rights network. Therefore, the spiral model cannot explain why the Chinese government has had such a significant influence over the enforcement mechanisms of these norms. (shrink)
Background The regulation of human cloning continues to be a significant national and international policy issue. Despite years of intense academic and public debate, there is little clarity as to the philosophical foundations for many of the emerging policy choices. The notion of "human dignity" is commonly used to justify cloning laws. The basis for this justification is that reproductive human cloning necessarily infringes notions of human dignity. Discussion The author critiques one of the (...) most commonly used ethical justifications for cloning laws – the idea that reproductive cloning necessarily infringes notions of human dignity. He points out that there is, in fact, little consensus on point and that the counter arguments are rarely reflected in formal policy. Rarely do domestic or international instruments provide an operational definition of human dignity and there is rarely an explanation of how, exactly, dignity is infringed in the context reproductive cloning. Summary It is the author's position that the lack of thoughtful analysis of the role of human dignity hurts the broader public debate about reproductive cloning, trivializes the value of human dignity as a normative principle and makes it nearly impossible to critique the actual justifications behind many of the proposed policies. (shrink)
This paper discusses three questions concerning the ethics of performance enhancement in sport. The first has to do with the improvement to policy and argues that there is a need for policy about doping to be re-constituted and to question the conceptual priority of ‘anti’ doping. It is argued that policy discussions about science in sport must recognise the broader context of sport technology and seek to develop a policy about ‘performance’, rather than ‘doping’. The second (...) argues that a quantitative enhancement to a sporting performance has no value and is, thus, unethical, unless the motivation behind using it implies something meaningful about being human. Thus, unless the use of the technology is constitutive of our humanness, then it is not a justifiable method of altering (rather than enhancing) performance. This rules out the legitimacy of using performance enhancement to gain an advantage over other competitors, who do not have access to similar means. Finally, the third argument claims that sport ethics has had only a limited discourse and has failed to recognise broader theoretical ideas in relation to performance modification, which might be found in the philosophy of technology and bioethics . Collectively, these positions articulate important concerns about the role of science in sport and the ethical discussions arising from them. (shrink)
This article is the second in a two-part review of policy design for human embryo research in Canada. In the first article in 6(1) of the JBI , we explain how this area of research is circumscribed by law promulgated by the federal Parliament and by guidelines adopted by the Tri-Agencies, and we provide a chronological description of relevant policy initiatives and outcomes related to these two policy instruments, with particular attention to the repeated efforts at (...) public consultation. This second article analyses the history of policy design for human embryo research in Canada, applying a typology of modes of public consultation developed by Eric Montpetit to better understand the various episodes of policy design and their corresponding outcomes. On this basis, we suggest that the degree to which the views of Canadian residents and citizens on human embryo research have been solicited as part of the policy-making process has diminished significantly over time. We also suggest that this diminished participation is likely to continue given the presence of powerful interest groups and policy communities “speaking for” Canadians. This raises interesting questions about the legitimacy of future policy initiatives for human embryo research in Canada. (shrink)
Abstract Education in the human rights arena has tended to emphasise, at least in the United States, civil and political rights. Into the next century, this moral educational agenda should be expanded to include more emphasis upon economic, social, and solidarity rights and the notion of the interdependency of human rights, the official position of the UN Human Rights Commission. The Universal Declaration of Human Rights, reaffirmed at the recent World Conference on Human Rights, is (...) the authoritative definition of human rights standards, and increasingly referred to as customary international law. That document should provide an adequate grounding for human rights education, which should facilitate a ?human rights culture?. It is argued here that moral education should not seek ?converts? to the principles of the Declaration, but rather emphasise open discussion and scholarship in order that students choose their values. This expansion in people's consciousness in regard to a comprehensive understanding of human rights principles could directly impact constitutional change, social policy and the fulfilment of human needs. (shrink)
Following press disclosures in 1993 that U.S. government agencies had been using human subjects in tests and trials involving radioactive isotopes since the mid-1940s, a major national initiative to locate and declassify records concerning these tests was initiated. The U.S. Department of Energy, which led the dedassification effort, pledged that a new "culture of openness" would attend the management of classified documents in the future. Following the attacks on the United States in September 2001, this momentum was reversed. (...) Dedassification initiatives were delayed or terminated, and a significant portion of the many thousands of records about "human radiation experiments" during the 1940s and 1950s were removed from both online access, which had been in place since the mid-1990s, and from the public domain altogether. (shrink)
In this essay, I argue that environmental risk is a strategic situation that places the individual citizen in the position of an imprisoned rider who is being exploited without his or her knowledge by the preferences of others. I contend that what is at stake in policy decisions regarding environmental risk is not numerical probabilities or consistent, complete, transitive preferences for individual welfare, but rather respect for the human agency of the individual. Human agency is a prerequisite (...) to one’s utility function and is threatened and exploited in the strategic situation that produces the imprisoned rider. This problem is created by the policy maker’s assumption that his or her task is to assume rational preferences and aggregate them. The guidelines for evaluation and justification of policy should move beyondwelfare preferences and involve an active state protecting human agency and empowering the imprisoned rider. Only in this way can we free all citizens (a priori) from fear of exploitation by those who would impose collective and irreversible risk on each of them in violation of their unconditional right to their own agency. (shrink)
Policy making is not only about the cut and thrust of politics. It is also a bureaucratic activity. Long before laws are drafted, policy commitments made, or groups consulted on government proposals, officials will have been working away to shape the policy into a form in which it can be presented to ministers and the outside world. Policy bureaucracies - parts of government organizations with specific responsibility for maintaining and developing policy - have (...) to be mobilized before most significant policy initiatives are launched. -/- This book describes the range of work policy officials do. The 140 civil servants interviewed for this study included officials who helped originate policies which were subsequently taken over as manifesto commitments by the Labour Party; officials who helped devise the formula by which billions of pounds are allocated to local government in grants; and also officials who recommended to the Secretary of State that a controversial publisher be allowed to take over a national newspaper. The background and career paths of middle-ranking officials show them to be a diverse group who do not tend to develop long-term subject specialisms. The instructions to which these officials work - whether coming from ministers or senior officials - are often very broad and leave much to personal interpretation. -/- Policy Bureaucracy goes on to examine how ministers and senior officials affect the work of middle ranking officials and the cues policy bureaucrats use to develop policy. The analytical approach adopted in the book is derived from Alvin Gouldner's Patterns of Industrial Bureaucracy and his elaboration of Max Weber's notion that hierarchy and expertise place a fundamental tension at the heart of modern bureaucracies. In the UK this tension is handled by combining 'invited authority' with 'improvised expertise'. The book also explores other models of handling this tension in political systems in Europe and the USA. (shrink)
In this paper, we provide as accurate a picture as possible of transnational trade in human eggs involving Canadians. We explain the legal status in Canada, and call for reform in the regulation, of such trade.
The first stage of the human embryonic stem(ES) cell research debate revolved aroundfundamental questions, such as whether theresearch should be done at all, what types ofresearch may be done, who should do theresearch, and how the research should befunded. Now that some of these questions arebeing answered, we are beginning to see thenext stage of the debate: the battle forproperty rights relating to human ES cells. The reason why property rights will be a keyissue in this debate is (...) simple and easy tounderstand: it costs a great deal of money todo this research, to develop new products, andto implement therapies; and private companies,researchers, and health professionals requirereturns on investments and reimbursements forgoods and services. This paper considersarguments for and against property rightsrelating to ES cells defends the followingpoints: (1) It should be legal to buy and sellES cells and products. (2) It should be legalto patent ES cells, products, and relatedtechnologies. (3) It should not be legal tobuy, sell, or patent human embryos. (4) Patentson ES cells, products, and related technologiesshould not be excessively broad. (5) Patents onES cells, products, and related technologiesshould be granted only when applicants statedefinite, plausible uses for their inventions. (6) There should be a research exemption in EScell patenting to allow academic scientists toconduct research in regenerative medicine. (7)It may be appropriate to take steps to preventcompanies from using patents in ES cells,products, and related technologies only toblock competitors. (8) As the field ofregenerative medicine continues to develop,societies should revisit issues relating toproperty rights on a continuing basis in orderto develop policies and develop regulations tomaximize the social, medical, economic, andscientific benefits of ES cell research andproduct development. (shrink)
The individual self and its critics -- The individualist assumptions of bioethical frameworks -- The genetic self is the connected self -- The failures of individual ethics in the genetic era -- The communal turn -- Developing alternatives: benefit sharing -- Developing alternatives: trust -- The ethical toolbox part one: recognising goods and harms -- The ethical toolbox part two: applying appropriate practices -- Possible futures.
Key ethical issues arise in association with the conduct of stem cell research by research institutions in the United States. These ethical issues, summarized in detail, receive no adequate translation into federal laws or regulations, also described in this article. U.S. Federal policy takes a passive approach to these ethical issues, translating them simply into limitations on taxpayer funding, and foregoes scientific and ethical leadership while protecting intellectual property interests through a laissez faire approach to stem cell patents and (...) licenses. Those patents and licenses, far from being scientifically and ethically neutral in effect, virtually prohibit commercially sponsored research that could otherwise be a realistic alternative to the federal funding gap. The lack of federal funding and related data-sharing principles, combined with the effect of U.S. patent policy, the lack of key agency guidance, and the proliferation of divergent state laws arising from the lack of Federal leadership, significantly impede ethical stem cell research in the United States, without coherently supporting any consensus ethical vision. Research institutions must themselves implement steps, described in the article, to integrate addressing ethical review with the many legal compliance issues U.S. federal and state laws create. (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 (France, Germany, the Netherlands, Portugal, Spain and the UK) were collected as part of a European Research Project examining human and non-human biobanking (EUROGENBANK, coordinated by Professor JC Galloux). (...) 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 (identified or identifiable samples). 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)
Background: Sharing of tissue samples for research and disease surveillance purposes has become increasingly important. While it is clear that this is an area of intense, international controversy, there is an absence of data about what researchers themselves and those involved in the transfer of samples think about these issues, particularly in developing countries. Methods: A survey was carried out in a number of Asian countries and in Egypt to explore what researchers and others involved in research, storage and transfer (...) of human tissue samples thought about some of the issues related to sharing of such samples. Results: The results demonstrated broad agreement with the positions taken by developing countries in the current debate, favoring quite severe restrictions on the use of samples by developed countries. Conclusions: It is recommended that an international agreement is developed on what conditions should be attached to any sharing of human tissue samples across borders. (shrink)
Ethical reflection on the justice/injustice of past public health policy can inform current and future policy creation and assessment. For eight years in the 1980s, Haitians were prohibited from donating blood in the USA due to their national origin, a supposed risk factor for AIDS. This case study underlines the racial stereotypes and cultural ignorance at play in risk assignment—which simultaneously marked Haitians as risky ‘others’ and excluded them as significant participants in policy-making. This article also discerns (...) Haitian understandings of justice related to this donor policy and explores how dimensions of this past policy relate to current blood donor policy. (shrink)
This article briefly reviews the various papers contained in this volume. They were originally presented at a research workshop held at Keele University in the UK in February 2003. It is suggested that the different papers raise a series of related legal, social and ethical issues and can be collectively seen to demonstrate the fact that policy formation in relation to reproductive matters is highly contested. It is concluded that ethical policy formation in this area needs to be (...) based on actual evidence of harm rather than assumed harm and that this therefore entails more empirical research into reproductive matters. (shrink)
Whats human rights got to do with it? That is, whats human rights got to do with the June 2004 report of the Social Sciences and Humanities Research Ethics Special Working Committee to the Inter-Agency Advisory Panel on Research Ethics. The disturbing answer is not enough. Certain key recommendations of the working committee, it is suggested, would unacceptably weaken the researchers legal and moral accountability to research participants. Those particular recommendations rely on misguided references to academic freedom and (...) the nature of the non-medical research context. In fact, universal human rights, and the legal instruments in which they are embodied ought to inform the research endeavor at every stage; from problem selection to analysis and conclusions. This will lead us closer to shared truths rather than simply to the academic elites vision of truth. Without sufficient regard for the human rights of research participants academic freedom itself is not possible. (shrink)
This paper considers the relevance of humangenetics as a case study through which links between bioethics and sport ethics have developed. Initially, it discusses the science of gene-doping and the ethics of policy-making in relation to future technologies, suggesting that the gene-doping example can elucidate concerns about the ethics of sport and human enhancement more generally. Subsequently, the conceptual overlap between sport and bioethics is explored in the context of discussions about doping. From here, the (...) paper investigates the ethics of gene-doping, arguing that a straightforward mapping of medical ethics onto sport ethics is not justified. In conclusion, it argues that gene-doping is consistent with a broader ethics of enhancement within elite sports. Moreover, the increased legitimacy of lifestyle medicine in society is likely to reduce the relevance of an anti-doping programme that is concerned with protecting the integrity of an alleged natural athlete. (shrink)
In this essay I analyze some conceptual difficulties associated with the demand that global institutions be made more democratically accountable. In the absence of a world state, it may seem inconsistent to insist that global institutions be accountable to all those subject to their decisions while also insisting that the members of these institutions, as representatives of states, simultaneously remain accountable to the citizens of their own countries for the special responsibilities they have towards them. This difficulty seems insurmountable in (...) light of the widespread acceptance of a state-centric conception of human rights, according to which states and only states bear primary responsibility for the protection of their citizens' rights. Against this conception, I argue that in light of the current structures of global governance the monistic ascription of human rights obligations to states is no longer plausible. Under current conditions, states are bound to fail in their ability to protect the human rights of their citizens whenever potential violations either stem from transnational regulations or are perpetrated by non-state actors. In order to show the plausibility of an alternative, pluralist conception of human rights obligations I turn to the current debate among scholars of international law regarding the human rights obligations of non-state actors. I document the various ways in which these obligations could be legally entrenched in global financial institutions such as the WTO, the IMF and the World Bank. These examples indicate feasible methods for strengthening the democratic accountability of these institutions while also respecting the accountability that participating member states owe to their own citizens. I conclude that, once the distinctions between the obligations to respect, protect and fulfill human rights are taken into account, no conceptual difficulty remains in holding states and non-state actors accountable for their respective human rights obligations. (shrink)
Government interference in free enterprise is growing. Should they intercede in business ethics and corporate responsibility; and if so, to what extent? The Morality of Business: A Profession for Human Wealthcare goes beyond the utilitarian case in discussing the various elements of business ethics, social policy, job security, outsourcing, government regulation, stakeholder theory, advertising and property rights. "Professor Machan has done it again! Profit seeking behavior by business is ethical and prudent, but it only can be (...) ethical when a person is free, and that depends upon having private property rights. Business ethics is not about ‘corporate citizenship,’ as so many others seem to believe. The contemplative life, so highly valued by many in academe, is made possible by the success of those in commerce. Which one lives a more ethical life? Read Machan’s, The Morality of Business for his answer." -Don Booth, Chapman University, California, USA. (shrink)
Introduction to the Ethical Perspectives Theme Issue (19/1) on Genetics and Justice, with contributions by Greg Bognar, David Hunter, Michele Loi, Oliver Feeney, Vilhjálmur Arnason, Durnin et al.
Government agencies and private risk assessors use (quasi) scientific risk assessment procedures to try to estimate or predict risk to human health or the environment that might result from exposure to toxic substances in order to take steps to prevent such risks from arising or to eliminate the risks if they already exist. In this paper I discuss several ways in which the "science" of carcinogen risk assessment differs from ordinary scientific enterprises. I also consider several ways in (...) which normative policy considerations infect this regulatory science. Scientists, philosophers of science, moral philosophers and policy makers should address these issues forthrightly in order to serve better the aims of science and regulation. (shrink)
In a critical review of late twentieth-century gene-culture co-evolutionary models labelled as ‘global phylogeny’, the authors present evidence for the long legacy of co-evolutionary theories in European-based thinking, highlighting that (1) ideas of social and cultural evolution preceded the idea of biological evolution, (2) linguistics played a dominant role in the formation of a unified theory of human co-evolution, and (3) that co-evolutionary thinking was only possible due to perpetuated and renewed transdisciplinary reticulations between scholars of different disciplines—especially within (...) the integrative framework of the ‘humanid’ and the ‘hominid’ branches of anthropology. (shrink)
