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)

Courses on ethics and technology have become compulsory for many students at the three Dutch technical universities during the past few years. During this time, teachers have faced a number of didactic problems, which are partly due to a growing number of students. In order to deal with these challenges, teachers in ethics at the three technical universities in the Netherlands — in Delft, Eindhoven and Twente — have developed a web-based computer program called Agora (see www.ethicsandtechnology.com). This program enables (...) students to exercise their ethical understanding and skills extensively. The program makes it possible for students to participate actively in moral reflection and reasoning, and to develop the moral competencies that are needed in their later professional practice. The developers of the program have tried to avoid two traps. Firstly, they rejected, from the outset, a cookbook style of dealing with ethical problems that applied ethics is often taken to be and, secondly, they wanted to design a flexible program that respects the student’s as well as the teacher’s creativity, and that tries to engage students in moral reflection. Agora meets these requirements. The program offers possibilities that extend beyond the requirements that are usually accepted for case-exercises in applied ethics, and that have been realised in several other computer models for teaching ethics. In this article, we describe the main considerations in the development of Agora and the features of the resulting program. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving (...) patients in biomedical research aiming to address its main challenges. (shrink)

This paper starts from the presupposition that moral codes often do not suffice to make agents understand their moral responsibility. We will illustrate this statement with a concrete example of engineers who design a truck’s trailer and who do not think traffic safety is part of their responsibility. This opinion clashes with a common supposition that designers in fact should do all that is in their power to ensure safety in traffic. In our opinion this shows the need for a (...) moral philosophy that helps engineers to interpret their responsibility and think more critically about it. For this purpose we will explore the moral philosophy of Alasdair MacIntyre, which is particularly interesting because he locates the beginning of moral thinking in the daily practice of a profession. This is consistent with the history of moral codes, for codes are also the product of moral reflection by professionals. We will use MacIntyre’s philosophy to (1) explain what is wrong with the designers’ understanding of their responsibility and (2) show a possible way to bring their reflection to a more self-critical level. We will also inspect MacIntyre’s proposal critically. (shrink)

Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it comes to supporting (...) positive freedom, because it is usually framed in terms of risk and risk management. We show how this ‘risk discourse’ steers thinking on the good life in a particular way. We go on to argue that empirical research into the actual deliberation and decision making processes of individuals and families may be used to enrich the environment of personal deliberation in three ways: (1) it points at a richer set of values that deliberators can take into account, (2) it acknowledges the shared nature of genes, and (3) it shows how one might frame decisions in a non-binary way. We argue that the public sharing and discussing of stories about personal deliberations offers valuable input for others who face similar choices: it fosters their positive freedom to shape their view of the good life in relation to DNA-diagnostics. We conclude by offering some suggestions as to how to realize such public sharing of personal stories. (shrink)

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice (...) early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

Moral philosophers in the laboratory -- Case studies -- Critical perspectives.

In their 2007 paper, Swierstra and Rip identify characteristic tropes and patterns of moral argumentation in the debate about the ethics of new and emerging science and technologies (or “NEST-ethics”). Taking their NEST-ethics structure as a starting point, we considered the debate about tissue engineering (TE), and argue what aspects we think ought to be a part of a rich and high-quality debate of TE. The debate surrounding TE seems to be predominantly a debate among experts. When considering the NEST-ethics (...) arguments that deal directly with technology, we can generally conclude that consequentialist arguments are by far the most prominently featured in discussions of TE. In addition, many papers discuss principles, rights and duties relevant to aspects of TE, both in a positive and in a critical sense. Justice arguments are only sporadically made, some “good life” arguments are used, others less so (such as the explicit articulation of perceived limits, or the technology as a technological fix for a social problem). Missing topics in the discussion, at least from the perspective of NEST-ethics, are second “level” arguments—those referring to techno-moral change connected to tissue engineering. Currently, the discussion about tissue engineering mostly focuses on its so-called “hard impacts”—quantifiable risks and benefits of the technology. Its “soft impacts”—effects that cannot easily be quantified, such as changes to experience, habits and perceptions, should receive more attention. (shrink)