Scientific citizenship in a democratic society (original) (raw)
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Democracy, participation and'scientific citizenship': New Zealand Initiatives
2003
The Royal Commission on Genetic Modification (2000-2001) was a major exercise in the construction of 'scientific citizenship' in Aotearoa/New Zealand. It was closely followed by a general election in which state regulation of genetic modification was a significant issue. In the aftermath of intensive public discussion about the utilization of new biotechnologies and the development of a national biotechnology strategy, the state is investing in research directed at dialogic approaches to debates about new technologies. This paper reflects on these initiatives and analyses the challenges confronting those experimenting with interventions directed at dialogic discussion between Māori and non-Māori members of community organisations, scientists, clinicians, policy-makers, lobby groups and actors in the biotechnology industry. It explores the ways in which participatory processes pioneered in Scandinavia, Canada, the UK and Europe are being modified in the New Zealand context and reflects on the possibility of developing New Zealand-specific strategies for effecting 'scientific citizenship'. 1 This paper is informed by discussion with members of the 'Constructive Conversations' research team and their contributions to project proposals, memos, discussion documents and methodological strategies.
Public deliberation on the life sciences
In this article I sketch several versions of the deliberative approach and then discuss five problems which confront a deliberative ethicist of contemporary problems of the life sciences, in particular about food, nature and agriculture. I begin by discussing problems of unequal participation in deliberations and secondly analyze cognitive and normative uncertainties that abound in the life sciences like biotechnology. Thirdly, these sciences comprise different scripts (e.g.nutrigenomics: personalized or public health) that steer the type of outcome, like products and services. Dependent on the framing, the products and services look different. Fourthly, multi-level problems are addressed, in particular the relationship between local, regional, national, international opinion formation and decision making. Fifthly, I will turn the table and argue that some scientific and technological project can have a large and severe deliberative impact and others not. Discussing these challenges I will develop some tools, like mapping different arrangements of the interaction between genomics and societal developments, developing imaginary futures by aesthetic explorations and by scenarios, by different moral screenplays and dramatic rehearsals,deliberative leadership, and designing deliberation eliciting technologies. KEYWORDS: participation, framing, uncertainties, multi-level governance, life sciences
Public Bioethics and Deliberative Democracy
Political Studies, 2010
This article aims to specify the dynamics of the democratisation of expertise by analysing public bioethics as a form of deliberative democracy. Public bioethics refers to the whole range of bodies and procedures, such as national ethics councils, parliamentary ethics commissions or public consultations on ‘ethical issues’, which are meant to inform and guide political decision making with respect to ethical considerations. The article draws from empirical research on three UK public bioethics bodies (the Human Genetics Commission, Nuffield Council on Bioethics and the Human Fertilisation and Embryology Authority). The article will show how public bioethics addresses some established problems of expert domination and rejects the aim of revealing substantial ethical unity in favour of facilitating and preparing public debate by representing the range of ethical positions on a particular issue, and as such seems to resemble more closely the ‘mixed’ discursive spheres advocated by Hendriks. However, the article argues that problems of expertise are transformed but not removed. By assuming the authority to categorise different publics and arrange them in a hierarchy, and framing ethical questions such that some kinds of concerns appear legitimately ethical while others are merely political or transient matters of public concern, public bioethics may be reproducing problems of expert domination at the more rarefied level of the construction of ethical positions.
BMC Medical Ethics, 2016
Background: The language of "participant-driven research," "crowdsourcing" and "citizen science" is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more "democratic," "patient-centric," or "lay" alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs are embracing this populist rhetoric to encourage wider public participation. Discussion: We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of "citizen science" outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of "public engagement" when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the "care.data" project of the National Health Service in England, and its proactive uses in the "Precision Medicine Initiative" of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. Summary: We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of "citizen science," the contexts in which it is used, and its demands with respect to participation, engagement, and governance.
Citizen Science in Deliberative Systems: Participation, Epistemic Injustice, and Civic Empowerment
Minerva
In this paper, we bring together the literature on citizen science and on deliberative democracy and epistemic injustice. We argue that citizen science can be seen as one element of “deliberative systems,” as described by Mansbridge et al. But in order to fulfil its democratic potential, citizen science needs to be attentive to various forms of exclusion and epistemic injustice, as analyzed by Fricker, Medina and others. Moreover, to tap the potentials of citizen science from the perspective of deliberative democracy, it needs to move towards a more empowered approach, in which citizens do not only deliver data points, but also, in invited or uninvited settings, participate in discussions about the goals and implications of research. Integrating citizen science into the deliberative systems approach embeds it in a broader framework of democratic theory and suggests the transmission of certain practical strategies (e.g., randomized sampling). It can also contribute to realism about b...
Technology and citizenry: a model for public consultation in science policy formation
Journal of Evolution and Technology, 2008
Probably the most interesting feature of the 40-year history of biomedical biotechnology is the extent to which it has been open to-and influenced by-concerns over social values and the public's voice. Good intentions notwithstanding, however, benchmarks and best practices are woefully lacking for informing the policy-making process with public values. This is particularly true in the United States where the call for "public debate" is often heard but seldom heeded by policy-making bodies. Geneforum, an Oregon-based non-profit, has developed a practical and working model designed to encourage deliberative democratic processes for addressing the ethical and social issues raised by emerging biotechnologies. Ordinary citizens do not need to be scientists to understand the important implications of the new technological advances. When factual information and basic principles are conveyed in linguistically and culturally appropriate ways, the scene is set for a shift from monologue to dialogue, from "I-thinking" to "We-thinking," to occur. This paper describes the Geneforum model structured to intensify the democratization of policy decision-making, in general, using genomic science, in particular, as one example of its application.