Life Sciences, Society and Policy最新文献

Communication by public authorities during a crisis situation is an essential and indispensable part of any response to a situation that may threaten both life and property. In the online connected world possibilities for such communication have grown further, in particular with the opportunity that social media presents. As a consequence, communication strategies have become a key plank of responses to crises ranging from epidemics to terrorism to natural disaster. Such strategies involve a range of innovative practices on social media. Whilst being able to bring about positive effects, they can also bring about a range of harmful unintended side effects. This include economic harms produced by incorrect information and a range of social harms that can be fuelled by myths and rumours, worsening negative phenomena such as stigmatisation and discrimination. Given the potential for such harms, one might expect that affected or potentially affected individuals would be able to challenge such measures before courts or administrative tribunals. As this paper demonstrates however this is not the case. More often than not seemingly applicable legal approaches are unlikely to be able to engage such methods. This is often because such measures represent activities that are purely expressive in nature and therefore not capable of imposing any binding legal or corporeal changes on individuals. Whilst some forms of soft law may pose requirements for public officials involved in such activities (e.g. codes of conduct or of professional ethics), they are not likely to offer potentially harmed individuals the chance to to challenge particular communication strategies before courts or legal tribunals. The result is that public authorities largely have a free reign to communicate how they wish and do not have to have to comply with a range of requirements (e.g. relating to form and substantive) content) that would in general apply to most forms of official administrative act.

In this article we explore how diagnostic and therapeutic technologies shape the lived experiences of illness for patients. By analysing a wide range of examples, we identify six ways that technology can (trans)form the experience of illness (and health). First, technology may create awareness of disease by revealing asymptomatic signs or markers (imaging techniques, blood tests). Second, the technology can reveal risk factors for developing diseases (e.g., high blood pressure or genetic tests that reveal risks of falling ill in the future). Third, the technology can affect and change an already present illness experience (e.g., the way blood sugar measurement affects the perceived symptoms of diabetes). Fourth, therapeutic technologies may redefine our experiences of a certain condition as diseased rather than unfortunate (e.g. assisted reproductive technologies or symptom based diagnoses in psychiatry). Fifth, technology influences illness experiences through altering social-cultural norms and values regarding various diagnoses. Sixth, technology influences and changes our experiences of being healthy in contrast and relation to being diseased and ill. This typology of how technology forms illness and related conditions calls for reflection regarding the phenomenology of technology and health. How are medical technologies and their outcomes perceived and understood by patients? The phenomenological way of approaching illness as a lived, bodily being-in-the-world is an important approach for better understanding and evaluating the effects that medical technologies may have on our health, not only in defining, diagnosing, or treating diseases, but also in making us feel more vulnerable and less healthy in different regards.

Emerging RRI practices have goals with respect to learning, governance and achieving RRI outcomes (action). However, few practices actually achieve the action phase as actors lack room to manoeuvre, and lack guidance on how to move forward because of the inherent unscriptedness of the emerging RRI practice. In this explorative research an emerging RRI practice is studied to identify factors and barriers to the creation of adaptive space, in which actors can be responsive to the other and adapt, and a narrative can be created in the act of doing. This paper describes how formal and informal ways of organizing emerging RRI practices contribute to adaptive space, and how the metaphorical heuristic of improvisational theatre provides clear action principles to actors involved in emerging RRI practices in action. The RRI practice studied here lies in the domain of juvenile justice, where barriers that restrict room to manoeuvre are abundant. Five factors - 'informality over formality', 'shared action space', 'be flexible', 'keep the action moving' and 'put the relationship central' - were identified to facilitate reflexivity and adaptation in this space.

Digital Epidemiology is a new field that has been growing rapidly in the past few years, fueled by the increasing availability of data and computing power, as well as by breakthroughs in data analytics methods. In this short piece, I provide an outlook of where I see the field heading, and offer a broad and a narrow definition of the term.

Within the domain of public health, vector-borne diseases are among the most vehemently discussed issues. Recent scientific breakthroughs in genome editing technology provided a solution to this issue in the form of a gene drive that might decrease and even eradicate vector-borne diseases. Gene drives are engineered, and designed genes that can break typical inheritance rules and be passed to almost all of the carrier's offspring. This genome editing and gene drive technology has become a powerful tool for ecological and environmental engineering, through which man can manipulate his surroundings, adjusting it to himself and directly mastering evolution and the ecosystem. Although the gene drive technology has been perceived as promising in the public health domain, ecological implications of its use are not to be underestimated. The primary aim of this paper is to overcome the ongoing discussion which mostly focuses on whether priority should be given to the environment or to public health, and to find an adequate answer and solution. In this quest to find the proper answer and solution, Pierre Teilhard de Chardin's thought might be useful, especially his concepts of the biosphere and the noosphere which may provide some clarifications as to why we are at the moment so cautious with gene drive technology and how we need to move towards a better common future on earth.

The rise of 'big biology' is bringing academic and industrial scientists together in large consortia to address translational challenges in the life sciences. In order to assess the impact of this change, this paper examines the existing norms and styles of collaboration in one high profile translational domain; stem cell research. Data is drawn from qualitative interviews with academic and industry scientists working in a large European stem cell research project. Respondents discussed what they perceived as the main benefits and risks of collaborative research, what styles of collaboration they were familiar with, and what collaborative work in stem cell science normally involves. A wide range of materials, data, and expertise can be exchanged during collaborative work. Informal collaborations are governed by an ethos of reciprocity and mediated by trust while formal project agreements can provide a safe space for sharing between unfamiliar partners. These characteristics make stem cell research well suited to pre-competitive public-private ventures but translation of new products to market may be more challenging.

Indian Biotech opponents have attributed the increase of suicides to the monopolization of GM seeds, centering on patent control, application of terminator technology, marketing strategy, and increased production costs. The contentions of the biotech opponents, however, have been criticized for a lack of transparency in their modus operandi i.e. the use of methodology in their argumentation. The fact is, however, that with the intention of getting the attention of those capable of determining the future of GM cotton in India, opponents resorted to generating controversies. Therefore, this article will review and evaluate the multifaceted contentions of both opponents and defenders. Although the association between seed monopolization and farmer-suicide is debatable, we will show that there is a link between the economic factors associated with Bt. cultivation and farmer suicide. The underlying thesis of biotech opponents becomes all the more significant when analysed vis-à-vis the contention of the globalization critics that there has been a political and economic marginalization of the Indian farmers. Their accusation assumes significance in the context of a fragile democracy like India where market forces are accorded precedence over farmers' needs until election time.

Responsible Research and Innovation (RRI) is a science policy concept that gained traction from 2000 onwards in the EU and US, in which alignment on purposes and values between different stakeholders is a key aspect. This thought experiment problematizes this particular notion: ethically acceptable and societally desirable outcomes are not necessarily achieved when alignment is a consequence of early closure. To argue this point, we took the example of the potential development of scanning technology for the detection of paedophilia among job applicants, for which indicators of broad societal support were found in an RRI project on neuroimaging. We analysed this case by looking through several lenses, obtained by structured and non-structured literature searches. We explored how facts and values are masked when a taboo topic is considered. This results in the black boxing of the problem definition, potential solutions and development trajectories. Complex unstructured problems can thus be perceived as manageable structured problems, which can in turn lead to irresponsible policies surrounding technology development. Responsible processes of research and technology development thus require the involvement of a critical reflector who is alert to signs of early closure and who prevents foreclosure of ongoing reflexive deliberation. There is an important role for ethical, legal and societal aspect studies within the framework of RRI. This paper shows that the concepts of "value/fact diversity masking" and "early discursive closure" are new avenues for RRI research.

This paper indicates how continental philosophy may contribute to a diagnostics of contemporary life sciences research, as part of a "diagnostics of the present" (envisioned by continental thinkers, from Hegel up to Foucault). First, I describe (as a "practicing" philosopher) various options for an oblique (or symptomatic) reading of emerging scientific discourse, bent on uncovering the basic "philosophemes" of science (i.e. the guiding ideas, the basic conceptions of nature, life and technology at work in contemporary life sciences research practices). Subsequently, I outline a number of radical transformations occurring both at the object-pole and at the subject-pole of the current knowledge relationship, namely the technification of the object and the anonymisation or collectivisation of the subject, under the sway of automation, ICT and big machines. Finally, I further elaborate the specificity of the oblique perspective with the help of Lacan's theorem of the four discourses. Philosophical reflections on contemporary life sciences concur neither with a Master's discourse (which aims to strengthen the legitimacy and credibility of canonical sources), nor with university discourse (which aims to establish professional expertise), nor with what Lacan refers to as hysterical discourse (which aims to challenge representatives of the power establishment), but rather with the discourse of the analyst, listening with evenly-poised attention to the scientific files in order to bring to the fore the cupido sciendi (i.e. the will to know, but also to optimise and to control) which both inspires and disrupts contemporary life sciences discourse.

The aim of this manuscript is to highlight that from the phenomenology and psychoanalysis point of view, the meaning of the notion of the body is different from the medical biologicist discourse. In psychoanalysis, the body is an erogenized body. It is constituted as an object for another self. Similarly, in phenomenology, the body is an own body in first instance. It is the body of a self, rather than a living body and a material body. Both positions enable us to understand how this conceptualization of the body is essential in any human field. Especially in the clinic, the position of the subject before the other will lead to a specific form of intervention. From this understanding of the human body, both phenomenology and psychoanalysis confirm that the biologicist understanding of the body, presumed by all psychological and medical practices, is insufficient.