Spreading disease: a controversy concerning the metaphysics of disease.

This article concerns the metaphysics of disease. Is disease a fixed feature of the world or a social value or preference? I argue that disease is not a value-laden concept and thus debates concerning it differ fundamentally from debates concerning health, harm, or suffering where evaluative judgements are central. I show how the so-called social constructionist view of disease has been motivated both by ethical concerns with medical practices and general theoretical doubts about scientific naturalism. If I can show that ethical concerns about medical treatment can be answered without adopting social constructionism, that leaves only the broader theoretical question of naturalism. I cannot completely answer those theoretical doubts, but I show that the theoretical motivation is less convincing when it is separated from the moral challenge often accompanying it. I conclude that a convincing defense of the non-naturalistic conception of disease is rarely attempted and proves more difficult and counter-intuitive than its proponents assume.     

RETRACING LIBERALISM AND REMAKING NATURE: DESIGNER CHILDREN,RESEARCH EMBRYOS,AND FEATHERLESS CHICKENS

Liberal theory seeks to achieve toleration, civil peace, and mutual respect in pluralistic societies by making public policy without reference to arguments arising from within formative ideals about what gives value to human life. Does it make sense to set aside such conceptions of the good when it comes to controversies about stem cell research and the genetic engineering of people or animals? Whether it is reasonable to bracket our worldviews in such cases depends on how we answer the moral questions that the use of these biotechnologies presuppose. I argue that the moral language of liberal justice – of rights and duties, interests and opportunities, freedom and consent, equality and fairness – cannot speak to these underlying concerns about what the human embryo is, why the natural lottery matters to us, and whether ‘animal nature’ is worth preserving. I conclude that liberal theory is incapable of furnishing a coherent or desirable account to govern the way we use our emerging powers of biotechnology.     

Genes and patent policy: rethinking intellectual property rights

Concerns about human gene patents go beyond moral disquiet about creating a commodity from a part of the human body and also beyond legal questions about whether genes are unpatentable products of nature. New concerns are being raised about harm to public health and to research. In response to these concerns, various policy options, such as litigation, legislation, patent pools and compulsory licensing, are being explored to ensure that gene patents do not impede the practice of medicine and scientific progress.     

Obituary: Dorothy Nelkin (30 July 1933–28 May 2003)

Biotechnologies are expected to have profound impacts across industrial and industrializing economies. One of the critical shaping influences on the development and use of these technologies will be the multiple social contests that have developed over their sustainability. For new technologies to become embedded in social, economic and institutional systems, processes of mutual adjustment must take place in both the technology and its social contexts. These adjustment processes tend to be complex and unpredictable, and their scale and scope reflect the anticipated significance of a new technology. I review the range of debates and contests about the impacts of biotechnology on environmental and social sustainability that will influence its development and diffusion. These contests are viewed as contingent, in that they are often framed by already established concerns and interests. In this sense, debates about biotechnology are primarily 'additive', rather than wholly novel.     

After Dolly--ethical limits to the use of biotechnology on farm animals

The cloning of Dolly the sheep gave rise to a widespread call for limits on interference with life. Until recently, the main limits were technical: what it is possible to do. Now scientists are faced with ethical limits as well: what it is acceptable to do. In this context, we take ethics to involve systematic and rational reflection on moral issues raised in the public sphere. The concerns of the general public are not necessarily valid, but they are the best point of departure if the discussion is to lead to a socially robust framework for setting limits to the use of animal biotechnology. To assess public understanding, we examine two sources of data: Eurobarometer surveys from 1991 to 2002 and a qualitative interview study carried out in Denmark in 2000. Based on these sources, we formulate, and then discuss closely, the following concerns: dangers to human health and the environment, animal welfare, animal integrity, and usefulness. In the final part of the article, it is proposed that a principle of proportionality should be the foundation for socially robust applications of animal biotechnology. Only in cases where the usefulness of the technology can be said to outweigh countervailing moral concerns, as in biomedical research, will applications of animal biotechnology stand up to scrutiny in the public sphere.     

Between a rock and a hard place: Farmers’ perspectives on gene editing in livestock agriculture in Bavaria

Farmers’ opinions and concerns are rarely considered in public debates about the use of gene‐editing technologies to modify farm animals. Subject Categories: Synthetic Biology & Biotechnology, S&S: Economics & Business

CRISPR‐Cas9, a new method for precisely modifying DNA, has received significant public attention in recent years. Heralded as a breakthrough technology to genetically modify organisms with hitherto unknown ease, precision and at low cost, CRISPR‐Cas9 has reignited controversies in science and society about the kind of genetic modifications that can and should be achieved in animals, plants and humans. Historically, such public debates have been particularly heated in two areas: human germline modification and agricultural applications. This article focuses on the latter and explores how small‐ and medium‐scale farmers evaluate the possibility and the potential benefits of gene editing livestock. This article importantly adds their voices to the discussion – voices that are surprisingly often unheard or ignored in public debates about using genetic technologies in agriculture.

… CRISPR‐Cas9 has reignited controversies in science and society about the kind of genetic modifications that can and should be achieved in animals, plants and humans.

     

On Cloning: Advocating History of Biology in the Public Interest

Cloning – the process of creating a cell, tissue line or even a complete organism from a single cell – or the strands that led to the cloning of a mammal, Dolly, are not new. Yet the media coverage of Dolly's inception raised a range of reactions from fear or moral repulsion, to cautious optimism. The implications for controlling human reproduction were clearly in the forefront, though many issues about animals emerged as well. On topics of public interest such as cloning, historians of biology have the opportunity to make a unique contribution. Such debates are often aired as if they have no precedents, either in biology or in the ethical, moral, and social concerns arising in the public arena. The technology leading to Dolly draws on strands of research going back to the 1890s, and the cycle of public response has been repeated often in the past century. What can we learn from examining these events historically, and how can we – or should we even try – to inform public opinion? I think we should try and will outline briefly some of the ways that can work.     

Learning to navigate the ethics of boundaries: schools,youth, and inter-religious relationships in Manado,Indonesia

Contributing to recent debates on ethical self-making, this article considers how Christian and Muslim youth in Manado, Indonesia, draw on various moral frameworks, and consequentially on both individual and community-oriented modes of subjectivity in navigating inter-religious encounters. The discussion foregrounds attitudes towards and normative expectations regarding inter-religious marriage as an important lens through which the shifting salience of inter-religious boundaries becomes apparent. Public discourses emphasize two contradictory frameworks for coexistence, projecting inter-religious marriage alternatively as the foundation for coexistence and as a major social threat. A focus on high schools demonstrates how public ethical debates are channelled through institutions and relate to the ways that youth grapple with coexisting ethical frameworks in a religiously plural society. In addition, the article makes a case for investigating the role of institutions in moral learning, taking into account the normative work accomplished in schools as teachers and students deliberate about and circulate ethical frameworks.     

"So, what is an embryo?" A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland

The moral status of the human embryo has gained much attention in debates over the acceptability, or otherwise, of human embryonic stem cell research. Far less attention has been paid to the suppliers of those embryos: people who have undergone IVF treatment to produce embryos to assist them to have a baby. It is sociologically and ethically important to understand their views and experiences of being asked to donate embryos for research if we are to fully understand the wider social and regulatory aspects of hESC science. This paper reports on parallel studies investigating these issues in the UK and in Switzerland. The studies reveal the inextricable entangling of the social and moral status of embryos. Since donors participate in different discursive domains and contexts (public, clinic, family) that shape their perception of "what" an embryo is, their views of embryos embody conflicting ideas and ambivalences.     

In search of the Holy Grail: Media discourse and the new human genetics

It has widely been recognized that the media play a key role in framing debates about genetic issues. This paper provides an overview of the major areas of debate within the social scientific literature on media, public understanding of science and human genetics. It evaluates current approaches to assessing the role of the media in influencing public policy debates. It argues that an analysis of the strategies of news sources should occupy a central role in furthering understanding about the ways in which various social actors seek to influence public policy agendas. At present, within the field of human genetics, only a handful of researchers have systematically examined the strategies of news sources from the perspective of the sources themselves. While recent research has focused upon identifying the major sources and how they are used in science reporting, there remains much to be done in uncovering the processes of negotiation and contestation among social actors prior to issues gaining media coverage.     

EMERGING TECHNOLOGIES AND DEVELOPING COUNTRIES: STEM CELL RESEARCH REGULATION AND ARGENTINA

Given its intimate relationship with the human body and its environment, biotechnology innovation, and more particularly stem cell research innovations as a part thereof, implicate diverse social and moral/ethical issues. This paper explores some of the most important and controversial moral concerns raised by human embryonic stem cell research (and the closely associated field of cloning), focusing on concerns relating to the wellbeing of the embryo and the wellbeing of society (the collective). It then considers how and whether these concerns are dealt with in regulatory instruments in Argentina, a southern developing country, examining in particular whether the values underlying these concerns have been translated into practical and effective rules reflective of the primary moral positions advanced. It concludes that Argentina's current state of stem cell research governance fails to consistently reflect the moral positions that have formed and is inadequate given Argentina's activity in this field.     

Public reasoning about voluntary assisted dying: An analysis of submissions to the Queensland Parliament,Australia

The use of voluntary assisted dying as an end‐of‐life option has stimulated concerns and debates over the past decades. Although public attitudes towards voluntary assisted dying (including euthanasia and physician‐assisted suicide) are well researched, there has been relatively little study of the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. Using a mix of computational textual mining techniques, keyword study and qualitative thematic coding to analyse public submissions to a parliamentary inquiry into voluntary assisted dying in Australia, this study critically examines the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. The analysis identified complex and potentially contradictory ethical principles being invoked on both sides of the debate. These findings deepen our understanding of the moral basis of public reasoning about end‐of‐life matters and will help to inform future discussions on policy and law reform. The findings underscore the importance of sound normative reasoning and the use of caution when interpreting opinion polls to inform policy.     

Defining the spectrum of genome policy

Many achievements in the genome sciences have been facilitated by policies that have prioritized genome research, secured funding and raised public and health-professional awareness. Such policies should address ethical, legal and social concerns, and are as important to the scientific and commercial development of the field as the science itself. On occasion, policy issues take precedence over science, particularly when impasses are encountered or when public health or money is at stake. Here we discuss the spectrum of current issues and debates in genome policy, and how to actively engage all affected stakeholders to promote effective policy making.     

Synthetic biology in society: learning from past experience?

Drawing an analogy to past debates over biotechnology, some stakeholders fear that synthetic biology (SB) could raise public concerns. Accordingly, ‘lessons from the past’ should be applied to avoid controversies. However, biotechnology in the 1990s is not the only possible comparator. The potential to become contested has been attributed to a number of other novel technologies. Looking at nanotechnology for example, controversies have not materialised to the extent predicted. The article discusses factors relevant for controversies over technologies as well as differences to the situation when modern biotechnology began to proliferate. Certain properties attributed to SB in the discussion so far indeed suggest a potential for controversies of its own, but perceptions may follow those on other aspects of biotechnology subject to local contingencies. Finally, it is questioned whether ELSI research should see its task in applying lessons from the past to ease technology introduction. Today, rather than seeing themselves being embedded in a linear model of technology development, social scientists take an interest in developments ‘upstream’ where technologies take shape.     

The appeal to nature implicit in certain restrictions on public funding for assisted reproductive technology

Certain restrictions on public funding for assisted reproductive technology (ART) are articulated and defended by recourse to a distinction between medical infertility and social infertility. We propose that underlying the prioritization of medical infertility is a vision of medicine whose proper role is to restore but not to improve upon nature. We go on to mark moral responses that speak of investments many continue to make in nature as properly an object of reverence and gratitude and therein (sometimes) a source of moral guidance. We draw on the work of Ludwig Wittgenstein in arguing for the plausibility of an appeal to nature in opposition to the charge that it must contain a logical fallacy. We also invite consideration of the moral plausibility of some appeal to nature. Finally, we examine what follows in the case of ART. Should medicine respect as natural limits that should not be overcome: the need for a man and a woman in reproduction; menopause; and even declining fertility with age? We must first ask ourselves to what degree we should defer to nature in the conduct of medicine, at least in the particular if not the general case. This will involve also asking ourselves what we think is natural and in what instances and spirit might we defy nature. Divergent opinions and policies concerning who should receive ART treatment and public funding are more easily understood in view of the centrality, complexity and fundamental nature of these questions.     

我国转基因技术风险交流分析

随着生物技术的迅猛发展,发展转基因产业的战略选择与公众对转基因安全疑虑的矛盾十分突出。通过转基因舆情分析,指出我国转基因风险交流存在的不足主要为风险交流工作缺乏顶层设计,信息公开程度较低,风险交流方式和内容单调,公益机构未能发挥应有作用。在此基础上,提出了加强转基因风险交流的政策建议:(1)明确转基因风险交流的目标;(2)建立转基因风险交流协调框架;(3)建立转基因信息公开平台和信息监测平台;(4)完善管理部门和公益机构的风险交流职能;(5)改革科技项目政策。     

Gene patents, health care policy and licensing schemes

Human gene patents continue to stir social controversy, including the possibility that they might adversely affect public access to useful technologies. It has been suggested that a compulsory licensing policy might be used to alleviate the adverse effect of patents in this context. We suggest, however, that it is unclear whether existing international policies and licensing practices will permit compulsory licensing to be used in a way that would address common concerns. Indeed, given the minor role that genetic technologies have in most health care systems, it would be difficult to justify compulsory licensing. At a minimum, policy makers need to be more realistic about the potential effects of international trade agreements on the development of biotechnology policies.     

Public consultation in ethics an experiment in representative ethics

Genome Canada has funded a research project to evaluate the usefulness of different forms of ethical analysis for assessing the moral weight of public opinion in the governance of genomics. This paper will describe a role of public consultation for ethical analysis and a contribution of ethical analysis to public consultation and the governance of genomics/biotechnology. Public consultation increases the robustness of ethical analysis with a more diverse set of moral experiences. Consultation must be carefully and respectfully designed to generate sufficiently diverse and rich accounts of moral experiences. Since dominant groups tend to define ethical or policy issues in a manner that excludes some interests or perspectives, it is important to identify the range of interests that diverse publics hold before defining the issue and scope of the discussion and the premature foreclosure of ethical dialogue. Consequently, a significant contribution of ethical dialogue strengthened by social analysis is to consider the context and non-policy use of power to govern genomics and to sustain social debate on enduring ethical issues.     

The Icelandic genome debate

Three of the central issues in contemporary debates about the commodification of the human body are those of property, ownership, and access. This article uses the case of the central medical database on Icelanders to discuss contesting claims about the ownership of the human genome, with respect to the rapid development of biotechnology, human genome projects and DNA collections. We emphasize the contrast between commercial and communitarian perspectives and to illustrate our argument we explore debates about the Icelandic database. These debates have been intense, focusing on a range of issues, including ethics, academic freedom, public health and, last but not least, the control and ownership of medical records, genetic information and genealogical data. This article should be seen primarily as an anthropological commentary on ongoing developments.     

Options for a rational dialogue on the acceptance of biotechnology

This paper explores how framing discussions about biotechnology in different ways influences how scientists, policy makers, and members of the public communicate with each other, to either inhibit or promote acceptance. It argues for the use of new techniques to create a rational dialogue with the public, based on scientific knowledge, that allows them to fully participate as informed stakeholders in debates about new technologies. Several different outlooks on the role of science in society are presented. Effectively communicating these different positions to the public requires innovative approaches. Drawing on advances in scientific communication practices, we briefly describe four principles that consider not only the scientific content, but also its delivery. New views need to be delivered with confidence, to be sensible within existing frameworks of understanding and not overwhelming, to reveal both potentially positive and negative aspects, and to promote interactive discussion with stakeholders. The authors conclude using the regional initiative in Southern Africa--the African Policy Dialogues on Biotechnology--as an illustration of this approach, where discussions started by first seeking agreement about establishing a process for dialogue, rather than initially trying to achieve consensus on any substantive points.