The label ‘Translational Research’ (TR) has become ever more popular in the biomedical domain in recent years. It is usually presented as an attempt to bridge a supposed gap between knowledge produced at the lab bench and its use at the clinical bedside. This is claimed to help society harvest the benefits of its investments in scientific research. The rhetorical as well as moral force of the label TR obscure, however, that it is actually used in very different ways. In (...) this paper, we analyse the scientific discourse on TR, with the aim to disentangle and critically evaluate the different meanings of the label. We start with a brief reconstruction of the history of the concept. Subsequently, we unravel how the label is actually used in a sample of scientific publications on TR and examine the presuppositions implied by different views of TR. We argue that it is useful to distinguish different views of TR on the basis of three dimensions, related to (1) the construction of the ‘translational gap’; (2) the model of the translational process; and (3) the cause of the perceived translational gap. We conclude that the motive to make society benefit from its investments in biomedical science may be laudable, but that it is doubtful whether the dominant views of TR will contribute to this end. (shrink)

Public funding institutions are able to influence what aspects researchers take into account when they consider the future impacts of their research. On the basis of a description of the evaluation systems that public research funding institutes in the Netherlands (STW and SenterNovem) use to estimate the quality of engineering science, this article shows that researchers are now predominantly required to reflect on the intellectual merit of their research and on the usability and marketability of the technology it contributes to. (...) In addition, SenterNovem also mandates reflection on sustainability. Here it is argued that these requirements do not suffice. Funding institutions should also do more to enhance reflection during the research process on the “soft impacts” of technologies, which refer to the alterations that technologies may bring about in the quality of human life. To do this it is suggested that it is helpful to engage a specifically trained ethicist to monitor the research process and create a feedback loop from the ethicist to the funding institution. (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different from (...) or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

During the last decades several tools have been developed to anticipate the future impact of new and emerging technologies. Many of these focus on ‘hard,’ quantifiable impacts, investigating how novel technologies may affect health, environment and safety. Much less attention is paid to what might be called ‘soft’ impacts: the way technology influences, for example, the distribution of social roles and responsibilities, moral norms and values, or identities. Several types of technology assessment and of scenario studies can be used to (...) anticipate such soft impacts. We argue, however, that these methods do not recognize the dynamic character of morality and its interaction with technology. As a result, they miss an important opportunity to broaden the scope of social and political deliberation on new and emerging technologies.In this paper we outline a framework for building scenarios that enhance the techno-moral imagination by anticipating how technology, morality and their interaction might evolve. To show what kind of product might result from this framework, a scenario is presented as an exemplar. This scenario focuses on developments in biomedical nanotechnology and the moral regime of experimenting with human beings. Finally, the merits and limitations of our framework and the resulting type of scenarios are discussed. (shrink)

Making better choices about future technologies that are being researched or developed is an important motivator behind lay ethics interventions. However, in practice, they do not always succeed to serve that goal. Especially authors who have noted that lay ethicists sometimes take recourse to well-known themes which stem from old, even ‘archetypical’ stories, have been criticized for making too little room for agency and decision-making in their approach. This paper aims to contribute to a reflection on how lay ethics can (...) acquire more practical relevance. It will use resources in narrative ethics to suggest that in order to be relevant for action, facilitators of lay ethics interventions need to invite participants to engage in a narrative quest. As part of a quest, lay ethicists should be asked to reflect on a specific question or choice, use diverse input which is informative about the heterogeneity of viewpoints that are defended in society and argue for their standpoints. (shrink)

Making better choices about future technologies that are being researched or developed is an important motivator behind lay ethics interventions. However, in practice, they do not always succeed to serve that goal. Especially authors who have noted that lay ethicists sometimes take recourse to well-known themes which stem from old, even ‘archetypical’ stories, have been criticized for making too little room for agency and decision-making in their approach. This paper aims to contribute to a reflection on how lay ethics can (...) acquire more practical relevance. It will use resources in narrative ethics to suggest that in order to be relevant for action, facilitators of lay ethics interventions need to invite participants to engage in a narrative quest. As part of a quest, lay ethicists should be asked to reflect on a specific question or choice, use diverse input which is informative about the heterogeneity of viewpoints that are defended in society and argue for their standpoints. (shrink)

In recent years, several authors have argued that the desirability of novel technologies should be assessed early, when they are still emerging. Such an ethical assessment of emerging technologies is by definition focused on an elusive object. Usually promises, expectations, and visions of the technology are taken as a starting point. As Nordmann and Rip have pointed out in a recent article, however, ethicists should not take for granted the plausibility of such expectations and visions. In this paper, we explore (...) how the quality of expectations on emerging technologies might be assessed when engaging in a reflection on the desirability of emerging technologies. We propose that an assessment of expectations’ plausibility should focus on statements on technological feasibility, societal usability, and desirability of the expected technology. Whereas the feasibility statement and, to a lesser extent, the usability statements are frequently quite futuristic, the claims on desirability, by contrast, often display a conservative stance towards the future. Assessing the quality of expectations and visions on behalf of emerging technologies requires, then, a careful and well-directed use of both skepticism and imagination. We conclude with a brief overview of the tools and methods ethicists could use to assess claims made on behalf of emerging technologies and improve the ethical reflection on them. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

Science and the institutions of science are far from democratic systems,and yet they are the most democratic of regimes. This essay examinesthe demand for transparency and public participation. One can distinguishseveral levels of public influence. Their function suggests thatdecision-makers, both scientists and technocrats, are being obligedto accept and work with rules which are no longer laid down by themselves.