Value-sensitive design and global digital health
In: Bulletin of the World Health Organization: the international journal of public health = Bulletin de l'Organisation Mondiale de la Santé, Band 98, Heft 8, S. 579-580
ISSN: 1564-0604
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In: Bulletin of the World Health Organization: the international journal of public health = Bulletin de l'Organisation Mondiale de la Santé, Band 98, Heft 8, S. 579-580
ISSN: 1564-0604
Mobile health (mHealth) 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.
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BACKGROUND: Gene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the academic literature. METHODS: In this qualitative study, we interviewed GDT experts (n = 33) from different disciplines to identify and better understand their moral views regarding these technologies. The pseudonymized transcripts were analyzed thematically. RESULTS: The respondents' moral views were principally influenced by their attitudes towards (1) the uncertainty related to GDTs; (2) the alternatives to which they should be compared; and (3) the role humans should have in nature. Respondents agreed there is epistemic uncertainty related to GDTs, identified similar knowledge gaps, and stressed the importance of realistic expectations in discussions on GDTs. They disagreed about whether uncertainty provides a rationale to refrain from field trials ('risks of intervention' stance) or to proceed with phased testing to obtain more knowledge given the harms of the status quo ('risks of non-intervention' stance). With regards to alternatives to tackle vector-borne diseases, invasive species and agricultural pests, respondents disagreed about which alternatives should be considered (un)feasible and (in)sufficiently explored: conventional strategies ('downstream solutions' stance) or systematic changes to health care, political and agricultural systems ('upstream solutions' stance). Finally, respondents held different views on nature and whether the use of GDTs is compatible with humans' role in nature ('interference' stance) or not ('non-interference stance'). CONCLUSIONS: This ...
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In: American Journal of Bioethics 18(12):57-59 (2018)
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In: Studia Universitatis Babeş-Bolyai. Bioethica, Band 66, Heft Special Issue, S. 64-64
ISSN: 2065-9504
"Today, a person can receive a hip implant to replace a deformed, swollen hip joint or a pacemaker to sustain the beating rhythm of their heart. Thanks to Regenerative Medicine, soon, it may become possible not just to replace, but to re-grow healthy tissues after injury or disease. To this end, tissue engineers are designing 'smart', 'life-like' biomaterial implants to activate the inherent regenerative capacity of the human body. Such a smart life-like biomaterial may for example stimulate re-growth of a fresh, living heart valve after implantation in a patient's heart. However, the meaning of the smartness and lifelikeness of these synthetic biomaterials is conceptually unclear. Therefore, in this paper, we first aim to unravel the meaning of the terms 'smart' and 'life-like', and next, analyse what ethical and societal implications are associated with this new generation of biomaterial implants as a result. Our conceptual analysis reveals that the biomaterials are considered 'smart' because they can communicate with human tissues and 'life-like' because they are structurally similar to these tissues. Moreover, the biomaterial artifacts are designed to integrate to a high degree with the living tissue of the human body. While these characteristics provide the biomaterials with their therapeutic potential, we argue that it complicates a) the irreversibility of the implantation process, b) questions of ownership regarding the biomaterial implant, and c) the sense of embodiment of the receiver of the implant. Overall, timely anticipation and consideration of these ethical challenges will promote responsible development of biomaterials in Regenerative Medicine. "
By 2030, more than 80% of Europe's population will live in an urban environment. The urban exposome, consisting of factors such as where we live and work, where and what we eat, our social network, and what chemical and physical hazards we are exposed to, provides important targets to improve population health. The EXPANSE (EXposome Powered tools for healthy living in urbAN SEttings) project will study the impact of the urban exposome on the major contributors to Europe's burden of disease: Cardio-Metabolic and Pulmonary Disease. EXPANSE will address one of the most pertinent questions for urban planners, policy makers, and European citizens: "How to maximize one's health in a modern urban environment?" EXPANSE will take the next step in exposome research by (1) bringing together exposome and health data of more than 55 million adult Europeans and OMICS information for more than 2 million Europeans; (2) perform personalized exposome assessment for 5,000 individuals in five urban regions; (3) applying ultra-high-resolution mass-spectrometry to screen for chemicals in 10,000 blood samples; (4) evaluating the evolution of the exposome and health through the life course; and (5) evaluating the impact of changes in the urban exposome on the burden of cardiometabolic and pulmonary disease. EXPANSE will translate its insights and innovations into research and dissemination tools that will be openly accessible via the EXPANSE toolbox. By applying innovative ethics-by-design throughout the project, the social and ethical acceptability of these tools will be safeguarded. EXPANSE is part of the European Human Exposome Network.
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