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)

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)

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)

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)

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

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)

In recent years, exposome research has been put forward as the next frontier for the study of human health and disease. Exposome research entails the analysis of the totality of environmental exposures and their corresponding biological responses within the human body. Increasingly, this is operationalized by big-data approaches to map the effects of internal as well as external exposures using smart sensors and multiomics technologies. However, the ethical implications of exposome research are still only rarely discussed in the literature. Therefore, (...) we conducted a systematic review of the academic literature regarding both the exposome and underlying research fields and approaches, to map the ethical aspects that are relevant to exposome research. We identify five ethical themes that are prominent in ethics discussions: the goals of exposome research, its standards, its tools, how it relates to study participants, and the consequences of its products. Furthermore, we provide a number of general principles for how future ethics research can best make use of our comprehensive overview of the ethical aspects of exposome research. Lastly, we highlight three aspects of exposome research that are most in need of ethical reflection: the actionability of its findings, the epidemiological or clinical norms applicable to exposome research, and the meaning and action–implications of bias. (shrink)

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)

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)

The next World Congress of Bioethics will be held in Doha, Qatar. Although this location provides opportunities to interact with a more culturally diverse audience, to advance dialogue between cultures and religions, offer opportunities for mutual learning, there are also huge moral concerns. Qatar is known for violations of human rights ‐ including the treatment of migrant workers and the rights of women ‐ corruption, criminalization of LGBTQI+ persons, and climate impact. Since these concerns are also key (bio)ethical concern we (...) call for a broad debate within the bioethics community whether organizing and attending the World Congress in Qatar is ethically problematic and how ethical concerns should be dealt with. (shrink)

The sexual exploitation of children in Indonesia is a serious crime that threatens the fundamental rights of children and their physical, emotional, and mental development. Cases of child sexual exploitation continue to rise, whether in the form of human trafficking, pornography, or sexual abuse, yet the response remains far from optimal. Although regulations and prevention programs are in place, the lack of coordination among law enforcement agencies and the low level of public awareness are major obstacles to resolving these cases.This (...) study employs a qualitative approach using a normative-empirical method, involving an analysis of the legal framework as well as in-depth interviews with legal practitioners and relevant stakeholders. The results indicate that although there is a strong legal foundation, policy implementation is often hindered by bureaucracy, limited human resources, and low legal awareness in society. Additionally, social stigma against victims exacerbates the situation, especially in rural areas.The study recommends an interconnected approach involving substantive law, legal structure, and legal culture as an effective solution to address the escalation of child sexual exploitation. These findings imply the need for improved inter-agency coordination, law enforcement training, and more extensive public awareness campaigns. (shrink)