Bridging comic art and research: lessons from an interdisciplinary collaboration project in a palliative care context.

The Dutch graphic novel Naasten, about palliative family caregiving, is the product of an interdisciplinary collaboration between researchers and two comic artists. This paper aims to present lessons, reflections and practical recommendations for other researchers interested in adopting (comic) arts-based research methods, in which artistic methods are used as novel ways for generating, analysing, interpreting or representing research data.Our project started with the goal of translation: we aimed at representing research findings into a more accessible, visual and textual form to stimulate discussion and reflection outside academia on moral challenges in family care. This was inspired by comics' hypothesised potential to show complex and embodied experiences, thus enabling more understanding in readers and offering powerful science communication tools. Although this goal of translation was realised in our project, we learnt along the way that the project could have benefited from a more explicit focus on interdisciplinarity from the start and by monitoring the interdisciplinary learning opportunities throughout the project. The following issues are important for any art-research collaboration: (1) an interest in and acknowledgement of each other's (potentially diverging) aims and roles: all parties should-from the start-commit themselves to interdisciplinary collaboration and to exploring the added value of using each other's methods, thereby finding a common methodological ground and language; (2) a continuous discussion of the sometimes contrasting approaches between artists and researchers: differences in using theory and story may result in different criteria for creating good art. When balancing scientific and aesthetic aims, the trustworthiness of the art work should remain an important criterion; (3) an awareness of the potential of interdisciplinary collaboration to offering new perspectives on one's scientific data collection and analysis, for example, providing other conceptualisations or indicating blind spots, provided that artists are involved in the early phases of research.

How clinicians discuss patients' donor registrations of consent and presumed consent in donor conversations in an opt-out system: a qualitative embedded multiple-case study.

BACKGROUND: The Netherlands introduced an opt-out donor system in 2020. While the default in (presumed) consent cases is donation, family involvement adds a crucial layer of influence when applying this default in clinical practice. We explored how clinicians discuss patients' donor registrations of (presumed) consent in donor conversations in the first years of the opt-out system. METHODS: A qualitative embedded multiple-case study in eight Dutch hospitals. We performed a thematic analysis based on audio recordings and direct observations of donor conversations (n = 15, 7 consent and 8 presumed consent) and interviews with the clinicians involved (n = 16). RESULTS: Clinicians' personal considerations, their prior experiences with the family and contextual factors in the clinicians' profession defined their points of departure for the conversations. Four routes to discuss patients' donor registrations were constructed. In the Consent route (A), clinicians followed patients' explicit donation wishes. With presumed consent, increased uncertainty in interpreting the donation wish appeared and prompted clinicians to refer to "the law" as a conversation starter and verify patients' wishes multiple times with the family. In the Presumed consent route (B), clinicians followed the law intending to effectuate donation, which was more easily achieved when families recognised and agreed with the registration. In the Consensus route (C), clinicians provided families some participation in decision-making, while in the Family consent route (D), families were given full decisional capacity to pursue optimal grief processing. CONCLUSION: Donor conversations in an opt-out system are a complex interplay between seemingly straightforward donor registrations and clinician-family interactions. When clinicians are left with concerns regarding patients' consent or families' coping, families are given a larger role in the decision. A strict uniform application of the opt-out system is unfeasible. We suggest incorporating the four previously described routes in clinical training, stimulating discussions across cases, and encouraging public conversations about donation.

Can we learn from hidden mistakes? Self-fulfilling prophecy and responsible neuroprognostic innovation.

A self-fulfilling prophecy (SFP) in neuroprognostication occurs when a patient in coma is predicted to have a poor outcome, and life-sustaining treatment is withdrawn on the basis of that prediction, thus directly bringing about a poor outcome (viz. death) for that patient. In contrast to the predominant emphasis in the bioethics literature, we look beyond the moral issues raised by the possibility that an erroneous prediction might lead to the death of a patient who otherwise would have lived. Instead, we focus on the problematic epistemic consequences of neuroprognostic SFPs in settings where research and practice intersect. When this sort of SFP occurs, the problem is that physicians and researchers are never in a position to notice whether their original prognosis was correct or incorrect, since the patient dies anyway. Thus, SFPs keep us from discerning false positives from true positives, inhibiting proper assessment of novel prognostic tests. This epistemic problem of SFPs thus impedes learning, but ethical obligations of patient care make it difficult to avoid SFPs. We then show how the impediment to catching false positive indicators of poor outcome distorts research on novel techniques for neuroprognostication, allowing biases to persist in prognostic tests. We finally highlight a particular risk that a precautionary bias towards early withdrawal of life-sustaining treatment may be amplified. We conclude with guidelines about how researchers can mitigate the epistemic problems of SFPs, to achieve more responsible innovation of neuroprognostication for patients in coma.

Prognostication of patients in coma after cardiac arrest: Public perspectives.

AIM: To elicit preferences for prognostic information, attitudes towards withdrawal of life-sustaining treatment (WLST) and perspectives on acceptable quality of life after post-anoxic coma within the adult general population of Germany, Italy, the Netherlands and the United States of America. METHODS: A web-based survey, consisting of questions on respondent characteristics, perspectives on quality of life, communication of prognostic information, and withdrawal of life-sustaining treatment, was taken by adult respondents recruited from four countries. Statistical analysis included descriptive analysis and chi2-tests for differences between countries. RESULTS: In total, 2012 respondents completed the survey. In each country, at least 84% indicated they would prefer to receive early prognostic information. If a poor outcome was predicted with some uncertainty, 37-54% of the respondents indicated that WLST was not to be allowed. A conscious state with severe physical and cognitive impairments was perceived as acceptable quality of life by 17-44% of the respondents. Clear differences between countries exist, including respondents from the U.S. being more likely to allow WLST than respondents from Germany (OR = 1.99, p < 0.001) or the Netherlands (OR = 1.74, p < 0.001) and preferring to stay alive in a conscious state with severe physical and cognitive impairments more than respondents from Italy (OR = 3.76, p < 0.001), Germany (OR = 2.21, p < 0.001), or the Netherlands (OR = 2.39, p < 0.001). CONCLUSIONS: Over one-third of the respondents considered WLST unacceptable when there is any remaining prognostic uncertainty. Respondents had a more positive perspective on acceptable quality of life after coma than what is currently considered acceptable in medical literature. This indicates a need for a closer look at the practice of WLST based on prognostic information, to ensure responsible use of novel prognostic tests.

Ambivalent anticipation: How people with Alzheimer's disease value diagnosis in current and envisioned future practices.

Emergent biomarkers for Alzheimer's disease (AD) are expected to provide earlier and more precise diagnoses. However, even if biomarkers live up to these expectations, it cannot be taken for granted that patients actually would value an earlier and more precise AD diagnosis. Based on an interview study, we aim to give more insight into the value of an AD diagnosis for patients, in existing as well as future practices, by describing how a diagnosis enables or may enable knowing, foreseeing, and acting in relation to one's illness. Our findings show that how people with AD value a diagnosis is not only characterised by great variety, as previous studies have shown, but also by profound ambivalence for the individual. With lack of treatment and poor prognostics as the status quo, this ambivalence and the way people deal with it are particularly linked to the far-from-straightforward capacity of an AD diagnosis to support anticipation of the future. We argue that in otherwise unchanged practices the envisioned future biomarker-based diagnostics are unlikely to reduce the ambivalence about receiving an AD diagnosis and, in particular, the challenges of anticipation that it entails. Rather, biomarker-based innovations may even reinforce some of the main issues involved.

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.

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.

Beyond bench and bedside: disentangling the concept of translational research.

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.

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.

Debating the desirability of new biomedical technologies: lessons from the introduction of breast cancer screening in the Netherlands.

Health technology assessment (HTA) was developed in the 1970s and 1980s to facilitate decision making on the desirability of new biomedical technologies. Since then, many of the standard tools and methods of HTA have been criticized for their implicit normativity. At the same time research into the character of technology in practice has motivated philosophers, sociologists and anthropologists to criticize the traditional view of technology as a neutral instrument designed to perform a specific function. Such research suggests that the tools and methods of more traditional forms of HTA are often inspired by an 'instrumentalist' conception of technology that does not fit the way technology actually works. This paper explores this hypothesis for a specific case: the assessments and deliberations leading to the introduction of breast cancer screening in the Netherlands. After reconstructing this history of HTA 'in the making' the stepwise model of HTA that emerged during the process is discussed. This model was rooted indeed in an instrumentalist conception of technology. However, a more detailed reconstruction of several episodes from this history reveals how the actors already experienced the inadequacy of some of the instrumentalist presuppositions. The historical case thus shows how an instrumentalist conception of technology may result in implicit normative effects. The paper concludes that an instrumentalist view of technology is not a good starting point for HTA and briefly suggests how the fit between HTA methods and the actual character of technology in practice might be improved.

Assessing Expectations: Towards a Toolbox for an Ethics of Emerging Technologies.

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.

Assessing the sociocultural impacts of emerging molecular technologies for the early diagnosis of Alzheimer's disease.

Novel technologies for early diagnosis of Alzheimer's disease (AD) will impact the way society views and deals with AD and ageing. However, such "sociocultural" impacts are hardly acknowledged in standard approaches of technology assessment. In this paper, we outline three steps to assess such broader impacts. First, conceptual analysis of the ideas underlying technological developments shows how these technologies redraw the boundary between Alzheimer's disease and normal ageing and between biological and social approaches of ageing. Second, imaginative scenarios are designed depicting different possible futures of AD diagnosis and societal ways to deal with ageing and the aged. Third, such scenarios enable deliberation on the sociocultural impact of AD diagnostic technologies among a broad set of stakeholders. An early, broad, and democratic assessment of innovations in diagnostics of AD is a valuable addition to established forms of technology assessment.

Unambiguous test results or individual independence? The role of clients and families in predictive BRCA-testing in the Netherlands compared to the USA.

It has been frequently acknowledged that results of predictive genetic tests may have implications for relatives as well as for the individual client. Ethicists have noted that an individual's right to know her genetic risk may conflict with a relative's right not to know this risk. It is hardly recognised, however, that family members may have a role in the production of test results as well. This article reconstructs the actual process of predictive BRCA-testing in the Netherlands, with a special focus on the roles assigned to clients and families and the expectations about family relationships inscribed in this practice. Fieldwork was carried out in an outpatient clinic for clinical genetics in an academic hospital. Data collection included 11 interviews with members of families, observations of counselling interviews between research participants and their clinical geneticist, and interviews with the 2 clinical geneticists involved in the consultations. It compares this process to the American practice of BRCA-testing. Whereas Dutch practice presupposes active involvement of diseased relatives in the testing process, American practice constitutes the client primarily as an independent individual who may or may not decide to involve her relatives. Moreover, Dutch clients are expected to have a harmonious, open and communicative relationship with their relatives. The American client, in contrast, is supposed to have more distant family relationships. It is argued that an interpretation of these differences in terms of 'the right to know' and 'the right not to know' misses the point, because the production of informative test results depends on the cooperation of relatives. The differences between Dutch and American practice are more adequately interpreted as implying a preference for unambiguous test results versus a preference for individual independence. The paper shows what is lost when opting for one value at the cost of another and discusses several alternatives to circumvent the value conflict at stake. By opening up for discussion the values implicit in BRCA-testing practices, the paper aims to contribute to debates on the overall desirability of these practices.

Molecular medicine and concepts of disease: the ethical value of a conceptual analysis of emerging biomedical technologies.

Although it is now generally acknowledged that new biomedical technologies often produce new definitions and sometimes even new concepts of disease, this observation is rarely used in research that anticipates potential ethical issues in emerging technologies. This article argues that it is useful to start with an analysis of implied concepts of disease when anticipating ethical issues of biomedical technologies. It shows, moreover, that it is possible to do so at an early stage, i.e. when a technology is only just emerging. The specific case analysed here is that of 'molecular medicine'. This group of emerging technologies combines a 'cascade model' of disease processes with a 'personal pattern' model of bodily functioning. Whereas the ethical implications of the first are partly familiar from earlier--albeit controversial--forms of preventive and predictive medicine, those of the second are quite novel and potentially far-reaching.

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.

Taking Care of the Symbolic Order. How Converging Technologies Challenge our Concepts.

In this article we briefly summarize how converging technologies challenge elements of the existing symbolic order, as shown in the contributions to this special issue. We then identify the vision of 'life as a do it yourself kit' as a common denominator in the various forms of convergence and proceed to show how this vision provokes unrest and debate about existing moral frameworks and taboos. We conclude that, just as the problems of the industrial revolution sparked off the now broadly established ideal of sustainability the converging technologies should be governed by the ideal of 'human sustainability'. The essence of this ideal is formed by the ongoing discussion about the extent to which we may, or should want to, 'make' our environment and ourselves, and when it is better to simply accept what is given and what happens to us.

Tensions and Opportunities in Convergence: Shifting Concepts of Disease in Emerging Molecular Medicine.

The convergence of biomedical sciences with nanotechnology as well as ICT has created a new wave of biomedical technologies, resulting in visions of a 'molecular medicine'. Since novel technologies tend to shift concepts of disease and health, this paper investigates how the emerging field of molecular medicine may shift the meaning of 'disease' as well as the boundary between health and disease. It gives a brief overview of the development towards and the often very speculative visions of molecular medicine. Subsequently three views of disease often used in the philosophy of medicine are briefly discussed: the ontological or neo-ontological, the physiological and the normative/holistic concepts of disease. Against this background two tendencies in the field of molecular medicine are highlighted: (1) the use of a cascade model of disease and (2) the notion of disease as a deviation from an individual pattern of functioning. It becomes clear that molecular medicine pulls conceptualizations of disease and health in several, partly opposed directions. However, the resulting tensions may also offer opportunities to steer the future of medicine in more desirable directions.