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)

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)

This study aims to investigate the role of self-construal in sharpening reputation judgment on earnings management cases. This study involves a personality variable that can provide sharper insights into individual assessments, namely self-construal. The study uses an experimental case with involved participants to judge the ethics of earnings management done by other managers (the target managers). Participants of this study consist of 109 master’s degree students majoring in accounting and management who acts as fellow managers. Participants provide ethical judgment and (...) reputation judgment of the target managers. This study indicates that ethical judgment on earnings management behavior differs depending on the target managers’ self-construal. In addition, ethical judgment has a positive and significant effect on reputation judgment. The following analysis showed that ethical judgment mediates the effect of earnings management behavior that self-construal moderates on reputation judgment. Studies that highlight the impact of managers’ reputation engaging in earnings management are still limited. This study used a behavioral approach, especially involving self-construal, to scrutinize the behavior of individuals within the organization, which is previous studies have not yet involved that personality factor. This research’s results imply that a manager’s response to peer’s behavior is helpful to design an appropriate management control system for organizations. This study only used earnings management scenarios in order to increase earnings. Earnings management can be in the form of actions to increase or decrease earnings. (shrink)

Autonomy of people on the autism-spectrum has only been very rarely conceptually explored. Autism spectrum is commonly considered a hetereogenous disorder, and typically described as a behaviorally-defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviors. Autism research mainly focuses on the behavior of autistic people and ways to teach them skills that are in line with social norms. Interventions such as therapies are being justified with the assumption that autists lack the capacity to be (...) self-reflective and to be “author of their lives”. We question this assumption, as some empirical research shows that autists are aware of their strengths and are critical about social norms, we take this as a starting point to reconsider the beliefs about autistic people’s capacities. As a theoretical framework, we draw on Berlin’s idea of positive and negative liberty as he clearly distinguishes between one’s own developed preferences and the simple absence of interference. By drawing on the concept of positive liberty, we illustrate that a lot of autists are aware of their own needs, and usually do not deny their own needs, values and interests. This makes them less prone than non-autistic people to adapt their preferences to external influences, which might be seen as sticking to an authentic way of living. Our analysis shows that many autists are hindered to be autonomous due to unjustified interference, unreflected assumptions about their self-determination, or by paternalistic actions. These observations contribute to a better understanding when help and interference are justified and a more differentiated understanding of autonomy of autistic people. (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)

In 1889 Hugo de Vries published " Intracellular Pangenesis " in which he formulated his ideas on heredity. The high expectations of the impression these ideas would make did not come true and publication was negated or reviewed critically. From the reactions of his Dutch colleagues and the discussion with the famous German zoologist August Weismann we conclude that the assertion that each cell contains all hereditary material was controversial and even more the claim that characters are inherited independently of (...) each other. De Vries felt that he had to convince his colleagues of the validity of his theory by providing experimental evidence. He established an important research program which resulted in the rediscovery of Mendel's laws and the publication of "The Mutation Theory." This article also illustrates some phenomena that go beyond an interesting episode in the development of theories of heredity. It shows that criticism from colleagues can move a researcher so deeply that he feels compelled to set up an extensive research program. Moreover it illustrates that it is not unusual that a creative scientist is only partially willing to take criticism on his theories into account. Last but not least it demonstrates that common opinion on the validity of specific arguments may change in the course of time. (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)

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)

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)

From their interpretation of the Australian Citizens’ Jury on genome editing, Scheinerman (2023) concludes that inclusive and diverse deliberative processes of public engagement have salient benefi...

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)

BackgroundVast sums are distributed based on grant peer review, but studies show that interrater reliability is often low. In this study, we tested the effect of receiving two short individual feedback reports compared to one short general feedback report on the agreement between reviewers.MethodsA total of 42 reviewers at the Norwegian Foundation Dam were randomly assigned to receive either a general feedback report or an individual feedback report. The general feedback group received one report before the start of the reviews (...) that contained general information about the previous call in which the reviewers participated. In the individual feedback group, the reviewers received two reports, one before the review period and one during the period. In the individual feedback group, the reviewers were presented with detailed information on their scoring compared with the review committee as a whole, both before and during the review period. The main outcomes were the proportion of agreement in the eligibility assessment and the average difference in scores between pairs of reviewers assessing the same proposal. The outcomes were measured in 2017 and after the feedback was provided in 2018.ResultsA total of 2398 paired reviews were included in the analysis. There was a significant difference between the two groups in the proportion of absolute agreement on whether the proposal was eligible for the funding programme, with the general feedback group demonstrating a higher rate of agreement. There was no difference between the two groups in terms of the average score difference. However, the agreement regarding the proposal score remained critically low for both groups.ConclusionsWe did not observe changes in proposal score agreement between 2017 and 2018 in reviewers receiving different feedback. The low levels of agreement remain a major concern in grant peer review, and research to identify contributing factors as well as the development and testing of interventions to increase agreement rates are still needed.Trial registrationThe study was preregistered at OSF.io/n4fq3. (shrink)

Advancing women’s empowerment and gender equality in agriculture is a recognised development goal, also within crop breeding. Increasingly, breeding teams are expected to use ‘market-based’ approaches to design more ‘demand-led’ and ‘gender-responsive’ crop varieties. Based on an institutional ethnography that includes high-profile development-oriented breeding initiatives, we unpack these terms using perspectives from political agronomy and feminist science and technology studies. By conceptualising the market as an ongoing, relational performance made up of discourses, practices and human and nonhuman actors, we trace (...) how the market is understood as an effective socioeconomic institution for soliciting demand, but also becomes a normative agenda. Construed as a demand variable, the relational and structural dimensions of gender are rendered less visible, which might strengthen rather than transform power relations’ status quo. On the other hand, a feminist science and technology perspective broadens the field of vision not only to the gendered dimensions of crop breeding, but also to the nonhuman actors, such as the crops and traits falling outside the market sphere of interest. By putting political agronomy and feminist science and technology studies into conversation, the article contributes to the development of a feminist political agronomy. (shrink)

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

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...

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)

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...