Simone van der Burg

Imagining the Future of Photoacoustic Mammography

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.

Taking the “Soft Impacts” of Technology into Account: Broadening the Discourse in Research Practice

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.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 ...

Responsible healthcare innovation: anticipatory governance of nanodiagnostics for theranostics medicine

Theranostics signals the integrated application of molecular diagnostics, therapeutic treatment and patient response monitoring. Such integration has hitherto neglected another crucial dimension: coproduction of theranostic scientific knowledge, novel technological development and broader sociopolitical systems whose boundaries are highly porous. Nanodiagnostics applications to theranostics are one of the most contested and potentially volatile postgenomics innovation trajectories as they build on past and current tensions and promises surrounding both nanotechnology and personalized medicine. Recent science policy research suggests that beneficial outcomes of innovations do not simply flow from the generation of scientific knowledge and technological capability in a linear or automatic fashion. Thus, attempts to offset public concerns about controversial emerging technologies by expert risk assurances can be unproductive. Anticipation provides a more robust basis for governance that supports genuine healthcare progress. This article presents a synthesis of novel policy approaches that directly inform theranostics medicine and the future(s) of postgenomics healthcare.

Informed decision making about predictive DNA tests: arguments for more public visibility of personal deliberations about the good life

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.

The Benefits of Patient Involvement for Translational Research

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 (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement (‘translation’) 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.

A Lay Ethics Quest for Technological Futures: About Tradition, Narrative and Decision-Making

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 (1) reflect on a specific question or choice, (2) use diverse (imaginative) input which is informative about the heterogeneity of viewpoints that are defended in society and (3) argue for their standpoints.

Ethicists in the Laboratory: Reflecting About Non-existent Objects

It has often been questioned whether ethics on the laboratory floor is useful, because there is not yet a technology to evaluate in the earlier phases of research. In this article it is argued that ethics does not need the existence of the object it discusses, for its assessments to be meaningful. In discussion with Peter-Paul Verbeek’s ethics of design, and Arie Rip’s prospective ontology, this chapter defends an intensionalist approach to technology which is inspired by Alexius Meinong. This approach allows to distinguish between technologies that are part of reality, and those that are not, without making the realm of the non-existent meaningless. Just like scientific talk about possible capacities of technologies is meaningful, for it leads to assumptions that can be researched, ethics is also able to evaluate those capacities. Both scientists and ethicists are concerned with characteristic capacities of something, before that ‘something’ exists. If we accept that scientists do that, there seems to be no reason why extra arguments should be provided to prove that ethics is a meaningful activity in the laboratory too, and could assess a technology that is still ‘in the making’.

Shaping the societal impacts of engineering sciences; a reflection on the role of public funding agencies.

There is a growing public policy interest in responsible innovation, which implies an enforcement of interdisciplinary communication between the engineering sciences and the social sciences or humanities anticipating and assessing the societal impacts of engineering research. This article focuses on an innovative brand of ethical technology assessment (TA), which offers (1) an initial interpretive framework for understanding what “societal impacts” are within a good life perspective to ethics and (2) a broad guideline for constituting a realistic conception of the future impacts of a technology that is still under research. Both aspects are employed to formulate ethical recommendations intended to influence the shape of technological products by means of modulating techno-scientific research activities. In this article, attention is drawn to an obstacle faced by this type of TA using a specific case study. In this case, the scientific engineers accepted the reasons offered by this ethical TA as good reasons, ones that were relevant to them, but they decided not to act on them because that would have meant breaking a commitment to the institution subsidizing their research. In this article, it is argued that public research funding agencies concerned with the societal impacts of the technologies resulting from the research they fund should reconsider their role to make it easier for scientific engineers to accommodate recommendations provided by ethical TA, e.g. by creating a feedback loop from the ethicist to the funding agency.There is a growing public policy interest in responsible innovation, which implies an enforcement of interdisciplinary communication between the engineering sciences and the social sciences or humanities anticipating and assessing the societal impacts of engineering research. This article focuses on an innovative brand of ethical technology assessment (TA), which offers (1) an initial interpretive framework for understanding what “societal impacts” are within a good life perspective to ethics and (2) a broad guideline for constituting a realistic conception of the future impacts of a technology that is still under research. Both aspects are employed to formulate ethical recommendations intended to influence the shape of technological products by means of modulating techno-scientific research activities. In this article, attention is drawn to an obstacle faced by this type of TA using a specific case study. In this case, the scientific engineers accepted the reasons offered by this ethical TA as good reaso...

Giving Voice to Patients : Developing a Discussion Method to Involve Patients in Translational Research

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 (R&D) 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 (translational) 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 (translational) biomedical research. It should enable patients (1) to put forward their experiential knowledge, (2) to develop a rich view of what an envisioned innovation might look like and do, and (3) 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.