There is an ongoing increase in the use of mobile health technologies that patients can use to monitor health-related outcomes and behaviours. While the dominant narrative around mHealth focuses on patient empowerment, there is potential for mHealth to fit into a growing push for patients to take personal responsibility for their health. I call the first of these uses ‘medical monitoring’, and the second ‘personal health surveillance’. After outlining two problems which the use of mHealth might seem to enable us (...) to overcome—fairness of burdens and reliance on self-reporting—I note that these problems would only really be solved by unacceptably comprehensive forms of personal health surveillance which applies to all of us at all times. A more plausible model is to use personal health surveillance as a last resort for patients who would otherwise independently qualify for responsibility-based penalties. However, I note that there are still a number of ethical and practical problems that such a policy would need to overcome. The prospects of mHealth enabling a fair, genuinely cost-saving policy of patient responsibility are slim. (shrink)

This article highlights the limitations of the tendency to frame health- and wellbeing-related digital tools (mHealth technologies) as empowering devices, especially as they play an increasingly important role in the National Health Service (NHS) in the UK. It argues that mHealth technologies should instead be framed as digital companions. This shift from empowerment to companionship is advocated by showing the conceptual, ethical, and methodological issues challenging the narrative of empowerment, and by arguing that such challenges, as well as the risk (...) of medical paternalism, can be overcome by focusing on the potential for mHealth tools to mediate the relationship between recipients of clinical advice and givers of clinical advice, in ways that allow for contextual flexibility in the balance between patiency and agency. The article concludes by stressing that reframing the narrative cannot be the only means for avoiding harm caused to the NHS as a healthcare system by the introduction of mHealth tools. Future discussion will be needed on the overarching role of responsible design. (shrink)

In their essay arguing for ethical review of social research, Sheehan et al write: > Inquiry and human life are intertwined and interdependent. To be human is to be curious, to ask questions about yourself, the world, and your place in the world. This process of inquiry is undertaken individually, but is a social activity.1 As researchers in medical ethics, all the authors in this issue have chosen to ask a particular type of question about the world: questions about ethical (...) complexity and justification. Their inquiries are rich and diverse. We can see each as an individual piece of scholarship, contributing to our knowledge of a specific topic. But we can also see medical ethics as a social activity—one undertaken by a community of authors and readers, debating and reasoning together. What is striking when we think of medical ethics in this second way is the diversity of approaches to research that are useful in our discussions. Understanding ethics in healthcare is furthered by very different types of research, and this issue of the journal clearly illustrates this breadth of approaches to scholarship in medical ethics. The three articles on transplant ethics provide an excellent example of this diversity of scholarship in medical ethics. All explore ethical aspects of transplantation but using different approaches. Ladin and colleagues2 identify an ethical problem through empirical inquiry. Their research examines the requirement that a patient have adequate social support in …. (shrink)

Recent publications on digital health technologies highlight the importance of ‘responsible’ use. References to the concept of responsibility are, however, frequently made without providing clear definitions of responsibility, thus leaving room for ambiguities. Addressing these uncertainties is critical since they might lead to misunderstandings, impacting the quality and safety of healthcare delivery. Therefore, this study investigates how responsibility is interpreted in the context of using digital health technologies, including artificial intelligence (AI), telemonitoring, wearables and mobile apps. We conducted a scoping (...) review with a systematic search in PubMed, Web of Science, Embase, CINAHL and Philosopher’s Index. A total of 34 articles were included and categorized using a theoretical framework of responsibility aspects, and revealed two main findings. First, we found that digital health technologies can expand and shift existing ‘role responsibilities’ among caregivers, patients and technology. Second, moral responsibility is often equated with liability or accountability, without clear justification. Articles describe new ways in which physicians can be held accountable, particularly in the context of AI, and discuss the emergence of a ‘responsibility gap’ where no-one can be fully responsible for AI-generated outcomes. The literature also shows that m-Health technologies can increase patients’ accountability for their own health. However, there was limited discussion in the reviewed literature on whether these attributions of accountability are appropriate. We conclude with implications for practice and suggestions for expanding the theoretical framework of moral responsibility, recommending further study on responsibility of collectives and artificial entities, and on the role of virtue in digital health. (shrink)

It is a dominant dictum in ethics that ‘ought implies can’ (OIC): if an agent morally ought to do an action, the agent must be capable of performing that action. Yet, with current technological developments, such as in direct-to-consumer genomics, big data analytics and wearable technologies, there may be reasons to reorient this ethical principle. It is our modest aim in this article to explore how the current wave of allegedly disruptive innovation calls for a renewed interest for this dictum. (...) As an effect of prevention and prediction oriented technological innovation, an increased focus on assumedly controllable lifestyle risks may be anticipated. For lay people who might turn into patients, this may entail a reinforced behavior-based individual responsibilisation. Holding on to the OIC dictum, such responsibilisation seems to require that individuals can actually control what is framed as ‘lifestyle risks’ when there is not always a reliable consensus about what one should do. As such, reference to OIC may be mobilised in function of a political task of designing institutions so as to enable such choice and control. (shrink)

Healthcare provision, like many other sectors of society, is undergoing major changes due to the increased use of data-driven methods and technologies. This increased reliance on big data in medicine can lead to shifts in the norms that guide healthcare providers and patients. Continuous critical normative reflection is called for to track such potential changes. This article presents the results of an interview-based study with 20 German and Swiss experts from the fields of medicine, life science research, informatics and humanities (...) of digitalisation. The aim of the study was to explore expert opinions regarding current challenges and opportunities related to data-driven medicine and medical research and to provide a methodological framework for empirically grounded, continuous normative reflection. To this end, we developed a heuristic tool to map and structure empirical findings for normative analysis. Using this tool, our interview material points to a polarisation between individualistic and collectivistic orientated argumentations among experts. The study shows that a multilevel analysis is required to deal with complex normative implications of data-driven approaches in medical research and healthcare. (shrink)

In this article it will be concluded that systematic menstrual tracking in women’s sport has the potential to cause harm to athletes. Since the ruling of Dobbs v. Jackson Women’s Health Organization (2022) in the United States, concerns regarding menstrual health tracking have arisen. Research suggests that the menstrual tracking of female athletes presents potential risks to “women’s autonomy, privacy, and safety in sport” (Casto 2022, 1725). At present, the repercussions of systematic menstrual tracking are particularly under-scrutinized, and this paper (...) seeks to combine novel research in the sport sciences with present ethical debates in the philosophy of sports. Utilizing Beauvoir’s feminist philosophy (2011), this paper argues that systematic menstrual tracking may contribute to the wider system of women’s oppression by exploiting female athletes, as well as enabling the internalization of submissive behaviour in cultures where athletes are expected to comply unquestioningly. Five policy recommendations are made concerning autonomy, informed consent, education, safeguarding and data access. The overall findings of this paper propose that a more in-depth understanding of the links between data, privacy, and the menstrual cycle are required by sports organizations and governing bodies if athletes are to be protected in a future where systematic menstrual tracking is inevitable. (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)

Empowerment, an already central concept in public health, has gained additional relevance through the expansion of mobile health (mHealth). Especially direct-to-consumer self-testing app companies mobilise the term to advertise their products, which allow users to self-test for various medical conditions independent of healthcare professionals. This article first demonstrates the absence of empowerment conceptualisations in the context of self-testing apps by engaging with empowerment literature. It then contrasts the service these apps provide with two widely cited empowerment definitions by the WHO, (...) which describe the term as a process that, broadly, leads to knowledge and control of health decisions. We conclude that self-testing apps can only partly empower their users, as they, we argue, do not provide the type of knowledge and control the WHO definitions describe. More importantly, we observe that this shortcoming stems from the fact that in the literature on mHealth and in self-testing marketing, empowerment is understood as a goal rather than a process. This characterises a shift in the meaning of empowerment in the context of self-testing and mHealth, one that reveals a lack of awareness for relational and contextual factors that contribute to empowerment. We argue that returning to a process-understanding of empowerment helps to identify these apps’ deficits, and we conclude the article by briefly suggesting several strategies to increase self-testing apps’ empowerment function. (shrink)

Mobile health (mHealth) apps for self-monitoring increasingly gain relevance for public health. As a mobile technology, they promote individual participation in health monitoring with the aim of disease prevention and the mitigation of health risks. In this paper, I argue that users of mHealth apps must engage in value trade-offs concerning their fundamental dimensions of well-being when using mobile health apps for the self-monitoring of health parameters. I particularly focus on trade-offs regarding the user’s self-determination as well as their capacity (...) to form personal attachments. Depending on the user’s level of advantage or disadvantage, value trade-offs can pose a threat to the users’ sufficient fulfillment of the dimensions of well-being. As such, value trade-offs can entrench existing structural injustices and prevent disadvantaged users to benefit from this technology. I argue that value trade-offs are, to some, a type of injustice that can drive disadvantaged users away from a sufficiency threshold of well-being, risk users to fall below the threshold, or have an accumulative effect on different dimensions of the user’s well-being. (shrink)

Technology corporations and the emerging digital health market are exerting increasing influence over the public healthcare agendas forming around the application of mobile medical devices. By promising quick and cost-effective technological solutions to complex healthcare problems, they are attracting the interest of funders, researchers, and policymakers. They are also shaping the public facing discourse, advancing an overwhelmingly positive narrative predicting the benefits of wearable medical devices to include personalised medicine, improved efficiency and quality of care, the empowering of under-resourced communities, (...) and delivery of health services previously unavailable to the citizens of developing countries. Typically techno-optimist in their description, the key barriers to this impending inflection point in healthcare are identified as technical issues such as short battery life and a lack of data protection. However, this tech innovation narrative is consistent with problematic ethical, social, and political assumptions that have practical and normative effects, and risk, one, undermining the real clinical potential of wearable devices and, two, designing social inequality and injustice into our mobile health interventions in global healthcare. I argue that the foundational assumptions dealing with the just distribution of healthcare ‘goods’, the individual as part of society, and the political framing of future healthcare policy devalue equity and despite what they promise cannot meet the distinctive needs of individuals and groups that do not conform to a standardised concept of care-receiver. (shrink)

This theoretical paper argues for prioritarianism as an ethical underpinning for digital health in contexts of extreme disadvantage. In support of this claim, the paper develops three prioritarian principles for making ethical decisions for digital health programme design, grounded in the normative position that the greater the need, the stronger the moral claim. The principles are positioned as an alternative view to the prevailing utilitarian approach to digital health, which the paper argues is not sufficient to address the needs of (...) the worst off. As researchers of digital health, we must ensure that the most globally marginalised are not overlooked by overtly technocentric implementation practices. Consequently, the paper concludes by advocating for use of the three principles to support stronger critical reflection on the ethics involved in the design and implementation of digital health programmes. (shrink)

Quality of life is an important outcome measure in mental health care. Currently, QoL is mainly measured with paper and pencil questionnaires. To contribute to the evaluation of treatment, and to enhance substantiated policy decisions in the allocation of resources, a web-based, personalized, patient-friendly and easy to administer QoL instrument has been developed: the QoL-ME. While human values play a significant role in shaping future use practices of technologies, it is important to anticipate on them during the design of the (...) QoL-instrument. The value sensitive design approach offers a theory and method for addressing these values in a systematic and principled manner in the design of technologies. While the VSD approach has been applied in the field of somatic care, we extended the VSD approach to the field of mental healthcare with the aim to enable developers of the QoL-instrument to reflect on important human values and anticipate potential value conflicts in its design. We therefore explored how VSD can be used by investigating the human values that are relevant for the design of the QoL-ME. Our exploration reveals that the values autonomy, efficiency, empowerment, universal usability, privacy, redifinition of roles, of responsibilites, reliability, solidarity, surveillance and trust are at stake for the future users of the technology. However, we argue that theoretical reflections on the potential ethical impact of a technology in the design phase can only go so far. To be able to comprehensively evaluate the usability the VSD approach, a supplementary study of the use practices of the technology is needed. (shrink)