BIOETHICS AND DEMOCRACY: COMPETING ROLES OF NATIONAL BIOETHICS ORGANISATIONS

In establishing National Bioethics Organisations (NBOs), liberal democracies seek to acknowledge the diversity of strongly held ethical positions and the imperative to engage in public debate about important bioethical decisions. NBOs are typically given a range of responsibilities, including contributing to and stimulating public debate; providing expert opinion on relevant issues for policy deliberations; and developing public policy. The state is now found to have an interest in areas previously thought to be a matter of individual choice. NBOs can provide one way of opening up public debate to allow the diversity of views to be heard in a manner that is well‐informed, articulate and responsive to both expert and ‘lay’ public views. We draw on debates in political theory about democratic decision‐making and on the policy making roles of some key NBOs. We are particularly interested in examining the capacity of NBOs to meet the democratic ideal of effective participation by the public, or citizenry, especially by those who are directly affected by the policies, in the development of effective public policy. We provide a basic framework for policy development involving NBOs that can begin to meet this ideal, a process of ‘contested deliberation’.     

Regulation of hESC Research in Australia: Promises and Pitfalls for Deliberative Democratic Approaches

This paper considers the legislative debates in Australia that led to the passage of the Research Involving Human Embryos Act (Cth 2002) and the Prohibition of Human Cloning Act (Cth 2002). In the first part of the paper, we discuss the debate surrounding the legislation with particular emphasis on the ways in which demands for public consultation, public debate and the education of Australians about the potential ethical and scientific impact of human embryonic stem cells (hESC) research were deployed, and the explicit and implicit framing of the scope of public consultation. We then ask whether, given the calls for public consultations, debate and understanding, current work in democratic theory could be helpful in analysing the process of policy-making in these areas. In particular, we canvass the literature relating to aggregative and deliberative models of democracy for processes that support the legitimacy of policy. We identify features of the debate that reflect the appeal of deliberative approaches as well as some of the possible hurdles or limitations to developing deliberative democratic approaches to policy in ethically contentious areas.     

转基因生物技术育种: 机遇还是挑战？

转基因生物技术是一项全新的育种技术, 也是当前国际上进展最快、竞争最激烈的研究领域之一。自20世纪90年代生物技术育种诞生以来, 转基因作物的商品化应用及由此引发的一系列问题就引起公众的广泛关注。该文就世界上转基因生物技术育种及产业化现状、几个主要转基因作物安全性案例及最终结果, 以及如何科学推进我国转基因作物的产业化等提出了自己的思考, 以期帮助公众科学地理解和面对转基因生物技术所带来的育种技术上的革命。     

GM crops: science, politics and communication

As the public debate in Europe about genetically modified (GM) crops heats up and the trade row between the United States and the European Union over GM food escalates, what better time to examine the issues with an international group of experts (Box 1). Their views are diverse, but they all agree that we need more impartial communication, less propaganda and an effective regulatory regime that is based on a careful case-by-case consideration of GM technology. It seems that GM crops are here to stay, so let us hope that these requirements are met and that the developing nations that perhaps have the most to gain from this technology can start to reap its benefits.     

US policies on human embryonic stem cells

The United States is a federal union with separate state jurisdictions. In part owing to the sometimes heated debate about public support for human embryonic stem-cell (ESC) research, there has been restricted federal support and little central regulation of this research to date. Instead, guidelines developed by scientific organizations have set principles for oversight and good practice for this research. These guidelines are functioning well, have influenced developing state regulations and, one hopes, will affect any future federal regulation.     

Marginalizing Experience: A Critical Analysis of Public Discourse Surrounding Stem Cell Research in Australia (2005�C6)

Over the past decade, stem cell science has generated considerable public and political debate. These debates tend to focus on issues concerning the protection of nascent human life and the need to generate medical and therapeutic treatments for the sick and vulnerable. The framing of the public debate around these issues not only dichotomises and oversimplifies the issues at stake, but tends to marginalise certain types of voices, such as the women who donate their eggs and/or embryos to stem cell research and the patients who might benefit from its potential clinical outcomes. This paper draws on empirical research conducted on a recent stem cell policy episode in Australia. From the qualitative examination of 109 newspaper opinion editorials and twenty-three in-depth interviews, it is argued that these voices are marginalised because they are based on discourses that have less epistemological status in public debate. Our results suggest that the personal experiences of women and patients are marginalised by the alliances that form between more powerful discourse communities that use science as a source of authority and legitimation. It is argued that members of these communities establish legitimacy and assert authority in public debate by discursively deploying science in claims that marginalise other epistemologies. Implications are discussed along with suggestions for a more enriched and inclusive public debate.     

The rationing agenda in the NHS. Rationing Agenda Group.

The Rationing Agenda Group has been founded to deepen the British debate on rationing health care. It believes that rationing in health care is inevitable and that the public must be involved in the debate about issues relating to rationing. The group comprises people from all parts of health care, none of whom represent either their group or their institutions. RAG has begun by producing this document, which attempts to set an agenda of all the issues that need to be considered when debating the rationing of health care. We hope for responses to the document. The next stage will be to incorporate the responses into the agenda. Then RAG will divide the agenda into manageable chunks and commission expert, detailed commentaries. From this material a final paper will be published and used to prompt public debate. This stage should be reached early in 1997. While these papers are being prepared RAG is developing ways to involve the public in the debate and evaluate the whole process. We present as neutrally as possible all the issues related to rationing and priority setting in the NHS. We focus on the NHS for two reasons. Firstly, for those of us resident in the United Kingdom the NHS is the health care system with which we are most familiar and most concerned. Secondly, focusing on one system alone allows more coherent analysis than would be possible if issues in other systems were included as well. Our concern is with the delivery of health care, not its finance, though we discuss the possible effects of changing the financing system of the NHS. Finally, though our position is neutral, we hold two substantive views--namely, that rationing is unavoidable and that there should be more explicit debate about the principles and issues concerned. We consider the issues under four headings: preliminaries, ethics, democracy, and empirical questions. Preliminaries deal with the semantics of rationing, whether rationing is necessary, and with the range of services to which rationing relates. Under ethics and democracy are the substantive issues of principle and theory. The final section deals with empirical questions and those relating to the practicality of various strategies.     

Science policy and society: the British debate over GM agriculture

The outcome of 'GM Nation?'--a public debate on genetic modification and the commercial growing of GM crops in Britain--was published in 2003. The objective of this public consultation was 'to promote an innovative, effective and deliberative programme of debate, against the background of the possible commercial production of GM crops in the UK...[and] provide meaningful information to Government about the nature and spectrum of the public's views, particularly at the grass roots level, to inform decision making'. Complementing an independent evaluation of GM Nation?, this article puts the debate into context, comments on the legitimacy of this, and similar exercises in public consultation, and develops some ideas on the future of public consultation on technological innovation.     

Primary Amoebic Meningoencephalitis Caused by Naegleria fowleri: An Old Enemy Presenting New Challenges

First discovered in 1899, Naegleria fowleri is a protist pathogen, known to infect the central nervous system and produce primary amoebic meningoencephalitis. The most distressing aspect is that the fatality rate has remained more than 95%, despite our advances in antimicrobial chemotherapy and supportive care. Although rare worldwide, most cases have been reported in the United States, Australia, and Europe (France). A large number of cases in developing countries go unnoticed. In particular, religious, recreational, and cultural practices such as ritual ablution and/or purifications, Ayurveda, and the use of neti pots for nasal irrigation can contribute to this devastating infection. With increasing water scarcity and public reliance on water storage, here we debate the need for increased awareness of primary amoebic meningoencephalitis and the associated risk factors, particularly in developing countries.     

Randomised Placebo-controlled trials and HIV-infected Pregnant Women in Developing Countries. Ethical Imperialism or Unethical Exploitation

The maternal-fetal HIV transmission trials, conducted in developing countries in the 1990s, undoubtedly generated one of the most intense, high profile controversies in international research ethics. They sparked off a prolonged acrimonious and public debate and deeply divided the scientific community. They also provided an impetus for the revision of the Declaration of Helsinki – the most widely known guideline for international research. In this paper, I provide a brief summary of the context, outline the arguments for and against the controversial use of placebo controls, and focus on particular areas that I believe merit further discussion or clarification. On balance, I argue that the researchers failed in their duties to protect the best interests of their research subjects, and to promote distributive justice. I discuss the difficulties of obtaining valid consent in this research context, and argue that it is unethical to inform women of their HIV status without at least offering them prophylactic treatment for their unborn children. A global view of justice, which endorses international equity, cannot be squared with international research guidelines that allow 'local conditions' to define the scope of duty to the control group. Finally, I suggest that the heated debate reflects a tension, if not an outright war, between two conflicting meta-ethical systems, or incommensurable paradigms, that underpin scientific research involving human subjects.     

Scientific Citizenship and good governance: implications for biotechnology

In the wake of public distrust regarding biotechnology, it has been suggested that the debate should be moved "upstream", whereby the public help to set research priorities. Although many scientists see this as an illogical reaction to a loss of faith in science, we argue that the boundaries between science and its technological applications have become blurred and this produces conflicts of interests that have led to this crisis of trust. Furthermore, this distrust is also a crisis in governance that calls for a new open and democratic approach to scientific research. We propose that the concept of Scientific Citizenship, based on good governance, will help to restore public trust and bridge the gap between science and the society that it serves. Integral to this is the suggestion that the governance of science forms part of the training for scientists.     

New issues and future legislation on biosafety.

The current debate on gene technology in Europe is reviewed with particular emphasis on the role of EFB and science in general. From this debate important lessons have been learned by scientists, industrial companies, legislators, parliamentarians and interest organisations. This gives confidence that the continued debate will eventually lead to public acceptance of gene technology even in the food area.     

Ethical issues in medical research in the developing world: a report on a meeting organised by Fondation Mérieux

This paper reports on a multidisciplinary meeting held to discuss ethical issues in medical research in the developing world. Many studies, including clinical trials, are conducted in developing countries with a high burden of disease. Conditions under which this research is conducted vary because of differences in culture, public health, political, legal and social contexts specific to these countries. Research practices, including standards of care for participants, may vary as a result. It is therefore not surprising that ethical issues emerge. This meeting sought to identify and discuss these issues from the perspectives of the many actors in such research, including community representatives, with a view to finding ethical and pragmatic solutions to these issues. Dialogue between these actors was also promoted, with a view to identifying the need to develop such dialogue in future.
Drawing from the experiences of the speakers, the colloquium attempted to outline some answers to several key questions characterising the field today. Experiences related to epidemiologic research, vaccine trials, drug trials, diagnostic tests and to some fundamental ethical issues in health research. Speakers were from different countries, disciplines and professions. The meeting provided a forum for consultation and debate between different ethics actors. Both encouraging findings and challenges emerged.     

Bioethics and Climate Change: A Response to Macpherson and Valles

Two articles published in Bioethics recently have explored the ways that bioethics can contribute to the climate change debate. Cheryl Cox Macpherson argues that bioethicists can play an important role in the climate change debate by helping the public to better understand the values at stake and the trade‐offs that must be made in individual and social choices, and Sean Valles claims that bioethicists can contribute to the debate by framing the issues in terms of the public health impacts of climate change. While Macpherson and Valles make valid points concerning a potential role for bioethics in the climate change debate, it is important to recognize that much more than ethical analysis and reflection will be needed to significantly impact public attitudes and government policies.     

On evaluating the GM Nation? Public debate about the commercialisation of transgenic crops in Britain

Abstract

The public debate about GM crops that took place in Britain in 2002–03 was an unprecedented experiment for the UK in public engagement. The Government, which sponsored the exercise, made a pledge: to take into account lay perspectives, as well as the views of its expert advisers, when making a decision about the possible commercialisation of this controversial technology. As officially accredited but independent evaluators of the debate, we were given unique behind-the-scenes access to the organisation and execution of the debate process. In this paper we report on our findings, which reveal a debate process that, whilst innovative, suffered from a number of important flaws: in terms of both design and implementation. These shortcomings in part reflect constraints on time and budget, and the context of political pressure in which the debate took place. However, they also demonstrated a lack of design knowledge and availability of appropriate expertise: matters with an important bearing on future plans for such initiatives.     

The democratic side of science-fiction

Suspicion towards technological advances has progressively grown during the xx(th) century. However, in the XXI(st) century, reading the NBIC (nanotechnology, biotechnology, information technology and cognitive science) report of the National Science Foundation, we can note that science has caught up with science fiction. These changes in public mentality on one side and in scientific capacities on the other argue for an evolution of the debate on sciences. The recent example of the national debate on nanotechnology in France has clearly shown that the public is no longer waiting for additional sources of scientific knowledge but rather waiting for the recognition of its authority to participate in the definition of the national R&D priority and associated scientific strategies. This is all the more legitimate that these strategies will have profound impact on the future of our societies and therefore cannot be decided only by scientists. Hence, it is crucial to identify innovative tools promoting debate on sciences and their technological spin-off. Here, we contend that science fiction has major assets that could face this challenge and facilitate the dialogue between sciences and society.     

The utopian promise of government

Today academic debate and public discourse about the Pacific often focuses on the collapse of government – on failed nation-states. Yet ever since Self-Government and Independence, Melanesians have experimented with developing their own alternative forms of local government, which have often embraced but also side-tracked official governmental schemes, structures, and practices. Using the Pomio Kivung movement in East New Britain, this article explores how government, together with its projects and promises of sovereignty, civilization, and development, is displaced and re-mediated through the world of the dead. The customary shamanic worlds of dreams and possession are redeployed and merged with the pastoral practices and disciplinary schemes of civilizing projects originally belonging to Western churches and governments.     

International stem cell research considerations

Legislative bodies in the international arena and in individual countries are actively engaged in developing policies regarding the establishment, distribution and use of human embryonic stem cells. Present and anticipated policies concerning research on human adult and embryonic stem cells of possible medical importance reflect the wide spectrum of popular views that range from complete rejection to enthusiastic support. Since the public debate concerning the use of human gametes or embryos for research purposes is not likely to abate anytime soon, all the more urgent becomes the quest for alternative approaches toward generating stem cells that are not embryonic and yet are pluripotent.     

Skepticism, statistical methods, and the cigarette: a historical analysis of a methodological debate

The discipline of modern "risk factor" epidemiology was in its formative stages in the early 1950s, when epidemiologic studies revealed a strong association between cigarette smoking and lung cancer mortality. Many medical scientists and physicians were reluctant to accept these studies as a demonstration of causation because the methods were "statistical" and involved data collected in uncontrolled conditions outside the laboratory. But a substantial number of senior biostatisticians and epidemiologists also voiced concerns, albeit more methodologically sophisticated, about the quality of the evidence at the time. Statistical methods were just beginning to work their way into medicine and public health, and many epidemiologists and statisticians were concerned about the potential misuse of these methods by untrained investigators. When studies of smoking and lung cancer gained increasing publicity and were being used to recommend public health policies, some prominent epidemiologists and statisticians highlighted this debate in their efforts to pursue methodological reform. Participants in the debate over smoking and lung cancer saw the need for explicit and rigorous standards for evaluating etiologic hypotheses, but they held conflicting views about what those standards should be. These diverging views reflect an underlying tension within the discipline of epidemiology between the search for "objective" methods of scientific inference and the practical needs of public health research that persists today.     

Biocontrol of Pests on Plant Crops in Denmark: Present Status and Future Potential

In this review, the status of biocontrol in plant crops in Denmark is analysed and factors governing the present use and future potential are described. In glasshouse vegetables, biocontrol is the dominant method to control pests while it is much less used in glasshouse ornamentals. On outdoor crops, the use of biocontrol is negligible. The main factors determining future prospects include: research, political initiatives, the scale of organic farming, the interest of companies marketing and advising on biocontrol, and public opinion. Good communication between scientists, advisers, growers, government authorities and the public has occurred for many years in Denmark, and has been essential for the successful implementation of biocontrol in glasshouses. Future development of microbial control (to which some organic growers and some members of the public show concerns) will require both research and a debate among the partners, particularly about environmental safety.