Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to (...) decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

The authors of the paper ‘Advance euthanasia directives: a controversial case and its ethical implications’ articulate concerns and reasons with regard to the conduct of euthanasia in persons with dementia based on advance directives. While we agree on the conclusion that there needs to be more attention for such directives in the preparation phase, we disagree with the reasons provided by the authors to support their conclusions. We will outline two concerns with their reasoning by drawing on empirical research and (...) by providing reasons that contradict their assumptions about competence of people with dementia and the importance of happiness in reasoning about advance directives of people with dementia. We will draw attention to the important normative questions that have been overstepped in their paper, and we will outline why further research is required. (shrink)

BackgroundOur human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to ethically guide these emerging biomedical innovations into society is needed. Such an approach has not been spelled out yet for bioethics, while there are frequent calls for ethical guidance of biomedical innovation, also by biomedical researchers themselves. New and emerging biotechnologies require anticipation of possible effects and implications, meaning the (...) scope is not evaluative after a technology has been fully developed or about hypothetical technologies, but real-time for a real biotechnology.Main textIn this paper we aim to substantiate and discuss six ingredients that we increasingly see adopted by ethicists and that together constitute “ethics parallel research”. This approach allows to fulfil two aims: guiding the development process of technologies in biomedicine and providing input for the normative evaluation of such technologies. The six ingredients of ethics parallel research are: (1) disentangling wicked problems, (2) upstream or midstream ethical analysis, (3) ethics from within, (4) inclusion of empirical research, (5) public participation and (6) mapping societal impacts, including hard and soft impacts. We will draw on gene editing, organoid technology and artificial intelligence as examples to illustrate these six ingredients.ConclusionEthics parallel research brings together these ingredients to ethically analyse and proactively or parallel guide technological development. It widens the roles and judgements from the ethicist to a more anticipatory and constructively guiding role. Ethics parallel research is characterised by a constructive, rather than a purely critical perspective, it focusses on developing best-practices rather than outlining worst practice, and draws on insights from social sciences and philosophy of technology. (shrink)

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention (...) to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy. (shrink)

Mobile health is rapidly being implemented and changing our ways of doing, understanding and organising healthcare. mHealth includes wearable devices as well as apps that track fitness, offer wellness programmes or provide tools to manage chronic conditions. According to industry and policy makers, these systems offer efficient and cost-effective solutions for disease prevention and self-management. While this development raises many ethically relevant questions, so far mHealth has received only little attention in medical ethics. This paper provides an overview of bioethical (...) issues raised by mHealth and aims to draw scholarly attention to the ethical significance of its promises and challenges. We show that the overly positive promises of mHealth need to be nuanced and their desirability critically assessed. Finally, we offer suggestions to bioethicists to engage with this emerging trend in healthcare to develop mHealth to its best potential in a morally sound way. (shrink)

The use of black box algorithms in medicine has raised scholarly concerns due to their opaqueness and lack of trustworthiness. Concerns about potential bias, accountability and responsibility, patient autonomy and compromised trust transpire with black box algorithms. These worries connect epistemic concerns with normative issues. In this paper, we outline that black box algorithms are less problematic for epistemic reasons than many scholars seem to believe. By outlining that more transparency in algorithms is not always necessary, and by explaining that (...) computational processes are indeed methodologically opaque to humans, we argue that the reliability of algorithms provides reasons for trusting the outcomes of medical artificial intelligence. To this end, we explain how computational reliabilism, which does not require transparency and supports the reliability of algorithms, justifies the belief that results of medical AI are to be trusted. We also argue that several ethical concerns remain with black box algorithms, even when the results are trustworthy. Having justified knowledge from reliable indicators is, therefore, necessary but not sufficient for normatively justifying physicians to act. This means that deliberation about the results of reliable algorithms is required to find out what is a desirable action. Thus understood, we argue that such challenges should not dismiss the use of black box algorithms altogether but should inform the way in which these algorithms are designed and implemented. When physicians are trained to acquire the necessary skills and expertise, and collaborate with medical informatics and data scientists, black box algorithms can contribute to improving medical care. (shrink)

In order to discover an effective treatment for dementia it is necessary to include dementia patients in clinical research trials. Dementia patients face an increased risk to lose the capacity to consent to research participation, and research possibilities with incompetent participants are legally strictly limited. One solution is for patients to consent to research through an advance research directive whilst still competent. In order to explore whether such a directive would be useful and valuable in practice we conducted a qualitative (...) study. We explored the opinions and arguments of researchers in the field of dementia, aiming to map the possibilities and constraints of ARDs. It was argued that a positive ARD could be valuable to discuss research participation with proxies, and patients with a negative ARD will be excluded from research trials. However, it is argued that an ARD cannot replace the informed consent procedure, and in practice proxy dissent will overrule written consent. The practical use of these directives is thus limited, as most researchers will not comply with positive directives. (shrink)

Dementia is highly prevalent and up until now, still incurable. If we may believe the narrative that is currently dominant in dementia research, in the future we will not have to suffer from dementia anymore, as there will be a simple techno-fix solution. It is just a matter of time before we can solve the growing public health problem of dementia. In this paper we take a critical stance towards overly positive narratives of techno-fixes by placing our empirical analysis of (...) dementia research protocols and political statements in a framework of technology assessment. From this perspective, it becomes obvious that a techno-fix is just one of many ways to approach societal problems and more importantly that technologies are way less perfect than they are presented. We will argue that this narrow scope, which focusses on the usual suspects for solving illnesses, reduces dementia to organismic aspects, and may be counterproductive in finding a cure for dementia. We conclude with outlining how the narrow scope can be balanced with other narratives and why we should have a reasonable scepticism towards the usual suspects. (shrink)

In their paper ‘Responsibility, second opinions and peer-disagreement: ethical and epistemological challenges of using AI in clinical diagnostic contexts’, Kempt and Nagel discuss the use of medical AI systems and the resulting need for second opinions by human physicians, when physicians and AI disagree, which they call the rule of disagreement.1 The authors defend RoD based on three premises: First, they argue that in cases of disagreement in medical practice, there is an increased burden of proof for the physician in (...) charge, to defend why the opposing view is adopted or overridden. This burden for justification can be understood as an increased responsibility. In contrast, such burden does allegedly not arise, when physicians agree in their judgement. Second, in those medical contexts where humans collaborate with humans such justification can be provided, since human experts can discuss the evidence and reasons that have led them to their judgement, through which the sources of disagreement can be found and a justified decision can be made by the physician in charge. Third, unlike human-to-human collaboration, such communicative exchange is not possible with an AI system. Due to AI’s opacity, the physician in charge has no means of illuminating why the AI disagrees. Conclusively, the authors propose RoD as a solution. RoD suggests that a second human expert should be consulted for advise in cases of human–AI disagreement. Once AI systems become more widespread in clinical practice, it can be expected that such type of disagreement occurs more frequently. AI, after all, is being implemented, because it promises, among others, higher accuracy, which implies that some abnormalities will be detected that the physician would have missed.2 Hence, it is laudable to discuss the moral implications of …. (shrink)

SummaryThis article addresses how and why the Dutch translation of Forbonnais's Elémens de commerce came about and the reasons for its lack of success. It explores the context in which the Utrecht printers and booksellers Spruit and Haanebrink in 1771 published a Dutch version of the first edition of the Elémens. In the preceding decades the deteriorating wealth and power of the Dutch Republic had become a major theme in the transnational debates on political economy. Recent research has established that (...) Dutch authors contributed to this debate as well, initially by propagating neutrality of trade in combination with an attempt reform the staple market system, but increasingly by arguing the necessity of another type of economy. Inspired by foreign examples, a movement of reformative patriotism emerged, advocating a more balanced economy in which international commerce stimulated mature agricultural and industrial sectors. This type of political economy could be found in Forbonnais's Elémens and may have triggered its rendering into Dutch. It was the first in a series of translations instigated by Hendrik van den Heuvel, the organiser of economic patriotism in the Dutch Republic. Spruit and Haanebrink dedicated the Dutch version of the Elémens to him and mentioned Van den Heuvel's recommendation of the French original. The fact that the intended buyers, economic patriots, were able to read the Elémens in French, may have precluded a big sale of the title, but the poor quality of the translation did not help either. However, one should not conclude that the Dutch reading public was not interested in the Elémens. In 1780 Van den Heuvel still recommended another edition in a better translation. Other sources, such as Dirk Hoola van Nooten's Dutch version of Condillac's Le commerce et le gouvernement considérés relativement l'un à l'autre, suggest that Forbonnais's ideas were acknowledged. (shrink)

Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for (...) the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement. (shrink)

Mind attribution may be divided into the subcategories of attribution of agency, associated with moral agency, and attribution of experience and emotion, associated with moral concern and moral patiency (Gray et al. Science 315(5812):619, 2007; Gray et al. Proceedings of the National Academy of Sciences of the United States of America 108(2):477–479, 2011b; Robbins and Jack Philosophical Studies 127(1):59–85, 2006). In this paper I attend to social context and the different psychological needs influencing the different types of mind attribution. A (...) need for social connection drives the attribution of experiences and emotions. The individual’s capacity to regulate emotional reactions is crucial for empathic concern. I further relate differences of mind attribution, attention, and emotional processing, to two different modes of functioning: In an interactive state of mind (comparable to the “second-person perspective” described by Schilbach et al. Behavioral and Brain Sciences, in press), social and emotional cues are attended to; In a detached task-oriented state of mind it may be beneficial to predict the behaviors of others but emotional information may not be attended to. The complexity and plasticity of mind attribution, including the possibility to train attentional mechanisms and regulation of emotions, is promising for the field of moral enhancement. (shrink)

Volume 20, Issue 8, August 2020, Page 90-92.

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects. In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision‐making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects.In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...

Wiggins and Wilbanks’s (2019) article draws attention to the rise of citizen science in the medical domain, part of a larger participatory turn in which citizens and patients are increasingly invol...

The idea that dementia is essentially a return to childhood and those affected must somehow be similar to children constitutes a deeply rooted and pervasive cultural trope. While such tropes may be helpful in making sense of an otherwise elusive and inscrutable state, they can at the same time promote inadequate understandings of dementia and hence also influence our attitudes and behaviour towards those affected in several problematic ways. In the present work, we provide a detailed account of the origins (...) and implications of the idea that people with dementia are somehow similar to children. In order to spell out the normative significance of this trope and to analyse its shortcomings, we will rely on a life‐course perspective. We will point out that the second‐childhood trope does not do justice to the particularities of the life phases of both children and people with dementia. This lack of biographical sensitivity brings about undignified treatment of and harm to those who have previously lived more autonomous lives. In conclusion, we will argue that people with dementia should not be equated with children as they are at a different point in their lives. This critical analysis of the second‐childhood trope shows the usefulness of a culturally and biographically sensitive theoretical framework for bioethical reflection. In particular, it provides reasons to reject infantilizing attitudes and behaviours and instead take seriously the personality, values and preferences shaped throughout the course of an individual's life. (shrink)

An increasing number of people worldwide are living with chronic conditions that have an aspect of bodily fragility as part of the condition or as an effect of treatment. In this article, I explore the temporal experience of bodily fragility and the particularities of consciousness states among people with the chronic condition osteogenesis imperfecta (OI) in Denmark. My aim is threefold. First, my goal is to give an insight into life with OI, a rare and rarely studied condition. Second, I (...) shed light on bodily fragility, a theme that lives in the shadows of other analytical foci in anthropology. Third, I will contribute to the anthropological understanding of the connection among body, physical environment, and consciousness. I argue that the lifeworlds of people with OI are haunted by mental and bodily memories and fearful future scenarios, which makes the past and the future collapse into the present. (shrink)