How can a realistic ethical imagination about the future of a technology take shape? This article contains a reflection which is based on the experiences of an embedded ethicist in the context of biophysical research conducive to the development of photoacoustic mammography, which is intended for the non-invasive detection of breast cancer. Imagination in this context already informs the activities of the biophysical researchers, but its role is limited: biophysical future scenarios concentrate on the technological advances that photoacoustics could bring (...) about. In this article it is argued that it is advisable to also consider the medical practice and the ways in which this practice is likely to change as an effect of the introduction of photoacoustic mammography into it. On the basis of this more encompassing imaginative endeavor it is possible to get a clearer idea about how new technologies are able to contribute to human well being, which is informative for the setting of research-goals/priorities and a responsible implementation of new technologies into the world. (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)

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)

Digital farming technologies promise to help farmers make well-informed decisions that improve the quality and quantity of their production, with less labour and less impact on the environment. This future, however, can only become a reality if farmers are willing to share their data with agribusinesses that develop digital technologies. To foster trust in data sharing, in Europe the EU Code of Conduct for agricultural data sharing by contractual agreement was launched in 2018 which encourages transparency about data use. This (...) article looks at the EU Code through the lens of literature on trust and contract agreements. We agree with the makers of the EU Code that a contract can make an important contribution to trust relationships as it is needed to mitigate the detrimental effects of power relationships between experts and non-experts. Building on Onora O’Neills perspective to trust, however, we argued that a contract can only be successful in fostering trust when information is comprehended by the more vulnerable party in this relationship who has to sign the contract, the more powerful partner takes responsibility to provide that information, and information is tailored to the information needs of the party signing the contract, even when data are re-used over a longer period. In addition, we think that differences between trust relationships and relationships of accountability, give reason to add to informed consent other more substantive ethical components in a more encompassing code of conduct. (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)

This article reflects on the contribution that stakeholder involvement could give to circular bioeconomy transformation (CBE). By comparing argument for stakeholder involvement in literature as well as on our own experiences in six stakeholder involvement workshops, we argue that it is probably unrealistic to fully achieve both normative and co-design goals in a single workshop. Furthermore, stakeholder involvement can help to acquire insight into dependencies in the market and offer an opportunity to connect people to deal with them. Therefore we (...) propose for future stakeholder involvement initiatives for CBE to focus on (1) identify relationships of dependency which make it hard for players in the market to change, (2) develop strategies to change while mitigating the detrimental effects on already existing relationships and (3) gradually breaking down relationships and building new ones that support CBE. (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)

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.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in biomedical research. It should enable patients to put forward their experiential knowledge, to develop a rich view of what an envisioned innovation might look like and do, and to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation. (shrink)

Newborn screening consists of taking a few drops of blood from a baby's heel in the first week of life and testing it for a list of disorders. In the United States and most countries in Europe, newborn screening programs began in the 1960s and 1970s with screening for phenylketonuria (PKU), a rare metabolic disease that causes severe and irreversible mental retardation unless treated before problems arise. As knowledge about rare diseases expanded and new screening technologies were introduced—such as the (...) tandem mass spectrometer and high‐performance liquid chromatography—the same blood sample could be used to test for a whole list of disorders. In general, screening programs in most countries have tended to expand, but in different countries they have expanded in different ways. Regulation also varies. In some states, screening is mandatory, whereas in others—Wyoming and Maryland—parents are asked for their informed consent. Germany and France have adopted an explicit informed consent procedure, whereas other European countries have a more informal “opt‐out” procedure that does not require signing an informed consent form. Whether newborn screening requires informed consent is an ongoing issue in bioethics. In this article, we will focus on the tension between informed consent and the problem of compliance in newborn screening. Asking for informed consent—allowing parents to opt out—is often thought to pose a threat to compliance. Building on the work of Onora O'Neill on informed consent and trust, however, as well as on work she coauthored with Neil Manson, we will argue that informed consent procedures may actually help maintain trust in newborn screening and may therefore support compliance. (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)

The current research examines the emergent literature of Critical Data Studies, and particularly aligns with Michael and Lupton’s (2016) manifesto calling for researchers to study the Public Understanding of Big Data. The aim of this paper is to explore Irish stakeholders’ narratives on data sharing in agriculture, and the ways in which their attitudes towards different data sharing governance models reflect their understandings of data, the impact that data hold in their lives and in the farming sector, as well as (...) their preferences for how data should be governed within agriculture. Seven focus groups were held in 2019 with Irish stakeholders from a variety of backgrounds, including agri-researchers, those working in SMEs, and farmers of varying ages and sectors. The primary activities carried out during these focus groups centred upon asking participants to discuss four different data sharing governance models, and to work their way through a set of value cards relating to these models. Focus group results are studied using an inductive, data-driven form of thematic analysis (Braun and Clarke 2006). Five primary themes cross-cut these focus groups: 1) Desire for a data intermediary, 2) Reversing the value chain, 3) Categorisation of data, 4) The common good, and 5) Potential danger in data sharing. These themes are explored in the paper through a detailed discussion of the focus group results, in which the authors track the manifestation of these themes across focus groups, and the ways they sometimes morphed or changed depending upon the participating stakeholder group. (shrink)

Newborn screening involves a complex logistical process, which depends on the close cooperation of many professionals, such as midwives, laboratory technicians, general practitioners and pediatricians. These professionals may encounter moral problems in the process, which have not been systematically studied before. This study fills this gap. We conducted interviews with 36 professionals involved in NBS in the Netherlands and made an inventory of the moral problems they encounter, as well as of the ways in which they tend to respond to (...) them. The moral problems professionals encounter stem from interpersonal conflicts and intrapersonal conflicts. Given the complexity of the work of NBS professionals, the study suggests that the moral problems that occur on the work floor cannot easily be solved by means of offering better or more stringent policy guidelines. Rather, it should be appreciated that professionals contribute significantly to shaping the morality of NBS with the help of their daily choices, and they should be supported in carrying out this task—for example with the help of a moral training or regular multidisciplinary moral deliberation, facilitated by an ethicist. (shrink)

These last years, the development of AI robots for agriculture, livestock farming and food processing industries is rapidly increasing. These robots are expected to help produce and deliver food more efficiently for a growing human population, but they also raise societal and ethical questions. As the type of questions raised by these AI robots in society have been rarely empirically explored, we engaged in four case studies focussing on four types of AI robots for agri-food ‘in the making’: manure collectors, (...) weeding robots, harvesting robots and food processing robots which select and package fruits, vegetables and meats. Based on qualitative interviews with 33 experts engaged in the development or implementation of these four types of robots, this article provides a broad and varied exploration of the values that play a role in their evaluation and the ethical questions that they raise. Compared to the recently published literature reviews mapping the ethical questions related to AI robots in agri-food, we conclude that stakeholders in our case studies primarily adopt a relational perspective to the value of AI robots and to finding a solution to the ethical questions. Building on our findings we suggest it is best to seek a distribution of tasks between human beings and robots in agri-food, which helps to realize the most acceptable, good or just collaboration between them in food production or processing that contributes to realizing societal goals and help to respond to the 21 century challenges. (shrink)

Newborn screening involves the collection of blood from the heel of a newborn baby and testing it for a list of rare and inheritable disorders. New biochemical screening technologies led to expansions of NBS programs in the first decade of the 21st century. It is expected that they will in time be replaced by genetic sequencing technologies. These developments have raised a lot of ethical debate. We reviewed the ethical literature on NBS, analyzed the issues and values that emerged, and (...) paid particular interest to the type of impacts authors think NBS should have on the lives of children and their families. Our review shows that most authors keep their ethical reflection confined to policy decisions, about for instance the purpose of the program, and its voluntary or mandatory nature. While some authors show appreciation of how NBS information empowers parents to care for their children, most authors consider these aspects to be ‘private’ and leave their evaluation up to parents themselves. While this division of moral labor fits with the liberal conviction to leave individuals free to decide how they want to live their private lives, it also silences the ethical debate about these issues. Given the present and future capacity of NBS to offer an abundance of health-related information, we argue that there is good reason to develop a more substantive perspective to whether and how NBS can contribute to parents’ good care for children. (shrink)

Onderzoekers die kritiek willen leveren op de institutionele eisen die doorgaans aan hun werk worden gesteld, nemen meestal een visie op de zin en noodzaak van onderzoek als uitgangspunt. Ze laten zien dat een onderzoeker die ‘goed scoort’ volgens de maatstaven van publieke onderzoeksfinanciers, zoals in Nederland nwo, nog geen goed onderzoekswerk levert. En ze geven redenen om te betwijfelen dat een instituut dat zich een ‘topinstituut’ mag noemen niet per se mensen opleidt die in staat zijn om zelfstandig hoogwaardig (...) en vernieuwend onderzoek te doen. (shrink)

Toen onze grootouders als huilende baby’s ter wereld kwamen telde de vroedvrouw hun vingers en tenen om hun gezondheid te bepalen. Tegenwoordig wordt daarvoor een breed scala aan technieken ingezet, bijvoorbeeld om het bloed te screenen dat een paar dagen na de geboorte wordt afgenomen uit de hiel van een kind. Dit is de zogenaamde hielprik, ofwel de neonatale screening. De technieken die worden gebruikt om babybloed te analyseren hebben de afgelopen veertig jaar gezorgd voor verschuivingen in de visie op (...) wat ‘ziekte’ is en wat ‘gezondheid’. En naar alle waarschijnlijkheid gaan die betekenissen de komende tien jaar opnieuw veranderen, wanneer het goedkoper en effectiever wordt om het hele genoom van een kind bij de geboorte te analyseren dan om de huidige screeningsmethoden te blijven gebruiken. Hoe beïnvloeden deze ontwikkelingen onze visie op wat het betekent om een gezond kind te krijgen? En kunnen ouders in de toekomst ooit nog vol vertrouwen zeggen: ‘Ons kind blaakt van gezondheid’? (shrink)

De relatie tussen wetenschap en samenleving is de afgelopen vijf decennia geleidelijk veranderd. In de periode vlak na de Tweede Wereldoorlog genoten onderzoekers relatieve onafhankelijkheid. Ze konden hun eigen onderzoeksonderwerpen en praktijken ontwikkelen en maakten de resultaten daarvan toegankelijk voor de samenleving met behulp van publicaties en onderwijs. De wetenschappelijke beoordelingscriteria bedachten de onderzoekers zelf, want zij waren de experts die konden beoordelen of onderzoek vindingrijk was, een heldere methodologie gebruikte en een goede vraagstelling had en of de resultaten bestaande (...) inzichten omverwierpen, verdiepten of verbreedden. (shrink)

What is the value of an early diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to patients. Based on seven focusgroups with patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they expect (...) it to empower their capacity to care. They value it, for instance, with respect to whether it explains experienced complaints, allows to start a process of psychological acceptance and social adaptation to the expected degeneration, contributes to dealing with anxieties, informs adequately about when to start preparing for the end of life, informs the planning of a request for euthanasia, or allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about. (shrink)

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)

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)