81 results on '"Lucivero, F."'
Search Results
2. Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe
- Author
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Kieslich, K, Fiske, A, Gaille, M, Galasso, I, Geiger, S, Hangel, N, Horn, R, Lanzing, M, Libert, S, Lievevrouw, E, Lucivero, F, Marelli, L, Prainsack, B, Schönweitz, F, Sharon, T, Spahl, W, Van Hoyweghen, I, and Zimmermann, BM
- Abstract
Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people’s lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April–May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations.
- Published
- 2023
3. Ethical Reasoning During a Pandemic: Results of a Five Country European Study
- Author
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Johnson, S. B., primary, Lucivero, F., additional, Zimmermann, B. M., additional, Stendahl, E., additional, Samuel, G., additional, Phillips, A., additional, and Hangel, N., additional
- Published
- 2022
- Full Text
- View/download PDF
4. Ethical Reasoning During a Pandemic: Results of a Five Country European Study
- Author
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Johnson, SB, Lucivero, F, Zimmermann, BM, Stendahl, E, Samuel, G, Phillips, A, and Hangel, N
- Subjects
Ethics ,Philosophy ,Health (social science) ,SARS-CoV-2 ,Health Policy ,infectious disease ,COVID-19 ,Humans ,moral judgements ,pandemics ,Morals ,Pandemics ,Qualitative Research - Abstract
Introduction: There has been no work that identifies the hidden or implicit normative assumptions on which participants base their views during the COVID-19 pandemic, and their reasoning and how they reach moral or ethical judgements. Our analysis focused on participants' moral values, ethical reasoning and normative positions around the transmission of SARS-CoV-2.Methods: We analyzed data from 177 semi-structured interviews across five European countries (Germany, Ireland, Italy, Switzerland and the United Kingdom) conducted in April 2020.Results: Findings are structured in four themes: ethical contention in the context of normative uncertainty; patterns of ethical deliberation when contemplating restrictions and measures to reduce viral transmission; moral judgements regarding "good" and "bad" people; using existing structures of meaning for moral reasoning and ethical judgement.Discussion: Moral tools are an integral part of people's reaction to and experience of a pandemic. 'Moral preparedness' for the next phases of this pandemic and for future pandemics will require an understanding of the moral values and normative concepts citizens use in their own decision-making. Three important elements of this preparedness are: conceptual clarity over what responsibility or respect mean in practice; better understanding of collective mindsets and how to encourage them; and a situated, rather than universalist, approach to the development of normative standards. ispartof: AJOB Empir Bioeth vol:13 issue:2 pages:67-78 ispartof: location:United States status: published
- Published
- 2022
5. Sustainable biobanks: a case study for a green global bioethics
- Author
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Samuel, G., primary, Lucivero, F., additional, and Lucassen, A. M., additional
- Published
- 2022
- Full Text
- View/download PDF
6. Normative positions towards COVID-19 contact-tracing apps: Findings from a large-scale qualitative study in nine European countries
- Author
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Lucivero, F., Marelli, L., Zimmerman, B., Prainsack, B., Galasso, I., Horn, R., Kieslich, K., Lanzing, M., Ongolly, F., Lievevrouw, E., Samuel, G., Sharon, T., Siffels, L.E., Stendahl, E., Van Hoyweghen, I., Lucivero, F., Marelli, L., Zimmerman, B., Prainsack, B., Galasso, I., Horn, R., Kieslich, K., Lanzing, M., Ongolly, F., Lievevrouw, E., Samuel, G., Sharon, T., Siffels, L.E., Stendahl, E., and Van Hoyweghen, I.
- Abstract
Item does not contain fulltext
- Published
- 2021
7. COVID-19 contact tracing apps: UK public perceptions
- Author
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Samuel, G., primary, Roberts, S. L., additional, Fiske, A., additional, Lucivero, F., additional, McLennan, S., additional, Phillips, A., additional, Hayes, S., additional, and Johnson, S. B., additional
- Published
- 2021
- Full Text
- View/download PDF
8. COVID-19 and Contact Tracing Apps: Ethical Challenges for a Social Experiment on a Global Scale
- Author
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Lucivero, F, Hallowell, N., Johnson, S., Prainsack, B., Samuel, G., Sharon, T., Lucivero, F, Hallowell, N., Johnson, S., Prainsack, B., Samuel, G., and Sharon, T.
- Abstract
Contains fulltext : 227898.pdf (Publisher’s version ) (Open Access)
- Published
- 2020
9. COVID-19 contact tracing apps: UK public perceptions.
- Author
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Samuel, G., Roberts, S. L., Fiske, A., Lucivero, F., McLennan, S., Phillips, A., Hayes, S., and Johnson, S. B.
- Subjects
PRIVACY ,COVID-19 ,MOBILE apps ,RESEARCH methodology ,PUBLIC health ,INTERVIEWING ,QUALITATIVE research ,MEDICAL ethics ,EMPLOYMENT ,CONTACT tracing ,PUBLIC opinion ,COVID-19 pandemic ,DIFFUSION of innovations ,LONGITUDINAL method ,EDUCATIONAL attainment - Abstract
In order to combat the COVID-19 pandemic, policymakers around the globe have increasingly invested in digital health technologies to support the 'test, track and trace' approach of containing the spread of the novel coronavirus. These technologies include mobile 'contact tracing' applications (apps), which can trace individuals likely to have come into contact with those who have reported symptoms or tested positive for the virus and request that they self-isolate. This paper takes a critical public health perspective that advocates for 'genuine participation' in public health interventions and emphasises the need to take citizen's knowledge into account during public health decision-making. In doing so, it presents and discusses the findings of a UK interview study that explored public views on the possibility of using a COVID-19 contact-tracing app public health intervention at the time the United Kingdom (UK) Government announced their decision to develop such a technology. Findings illustrated interviewees' range and degree of understandings, misconceptions, and concerns about the possibility of using an app. In particular, concerns about privacy and surveillance predominated. Interviewees associated these concerns much more broadly than health by identifying with pre-existent British national narratives associated with individual liberty and autonomy. In extending and contributing to ongoing sociological research with public health, we argue that understanding and responding to these matters is vital, and that our findings demonstrate the need for a forward-looking, anticipatory strategy for public engagement as part of the responsible innovation of the COVID-19 contact-tracing app in the UK. [ABSTRACT FROM AUTHOR]
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- 2022
- Full Text
- View/download PDF
10. Making the invisible visible
- Author
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Lucivero, F, Delvenne, P, and Van Oudheusden, M
- Subjects
Social sciences (General) ,H1-99 ,deliberation ,lcsh:Social Sciences ,lcsh:H ,normativity ,pragmatism ,lcsh:T ,T1-995 ,technology assessment ,ethics ,lcsh:Technology ,Technology (General) - Abstract
Technology assessment (TA) is an analytic and interactive practice that produces evaluative judgments about the societal implications of technology. Despite this distinct evaluative disposition, “normativities” inherent in TA programs and practices often remain hidden. Therefore, TA practice and outcomes often overlook a range of methodological, ethical, and political issues. In an attempt to remedy this shortcoming, this article explores how TA aims to improve political decision making in science and technology (meta-normativity) and is imbued with the values, norms, and moral positions of both participants and TA practitioners (in-normativity). It provides recommendations to render these normativities in TA more visible, and thereby amenable to reconsideration and change.
- Published
- 2019
11. Introduction to the Special Theme: The expansion of the health data ecosystem – Rethinking data ethics and governance
- Author
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Sharon, T., Lucivero, F., Sharon, T., and Lucivero, F.
- Abstract
22 juli 2019, Contains fulltext : 208657.pdf (publisher's version ) (Open Access)
- Published
- 2019
12. Beyond individualism:Is there a place for relational autonomy in clinical practice and research?
- Author
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Dove, ES, Kelly, SE, Lucivero, F, Machirori, M, Dheensa, S, and Prainsack, B
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Cases ,clinical ethics ,healthcare ,consent ,care ,autonomy ,Autonomy ,bioethics ,ethics ,individualism ,relational autonomy - Abstract
The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person’s care and responsibility for connected others.
- Published
- 2017
13. Applying the reasoning behind the development of honours programmes to other forms of cognitive enhancement
- Author
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Olthof, B., Peeters, A., Schelle, K., Haselager, W.F.G., Lucivero, F., Vedder, A., Lucivero, F., and Vedder, A.
- Subjects
Perception, Action and Control [DI-BCB_DCC_Theme 2] ,Cognitive artificial intelligence - Abstract
Item does not contain fulltext The debate on the ethical, social and legal impact of technologies enhancing human capabilities has been largely fed by philosophy and ethics scholars. These contributions offer arguments in favour or against the use and distribution of more or less specific types of enhancing technologies. Since authors' positions drastically vary from 'trans-' or 'post-' humanist claims about the desirability of these technologies to 'conservative' views opposed to those technologies and showing their dangers and perils, this debate is often heated and confused. The distinction between therapy and enhancement itself is exemplary in this respect. The distinction is often not meant to merely serve the theoretical purpose of creating definitional clarity; it is also often implicitly used to depict one class of actions as morally unproblematic (therapy) and another class of actions as morally problematic (enhancement). The debate on human enhancement is not only a matter of philosophical concern but it is also a hot topic in public and political discussions, with an increasing demand of European institutions for grounded recommendation concerning policies and governance of technologies for human enhancement. Therefore, on the one hand we have a heated debate that is a core interest of political institutions and, on the other hand, we have little reflection on the terms and concepts of this debate. This volume aims to fill this gap by providing analysis and clarification of the main trends, concepts, and assumptions of the debate. The essays in this volume examine the debate from a meta-level, analysing the discussion and mapping its arguments and conclusions, shedding new light on the traditional distinctions and assumptions in the debate on human enhancement from different disciplinary perspectives: law, ethics, philosophy of technology, science and technology studies, social sciences, engineering science, technology assessment and general regulation studies. This volume is one of the results of the project Regulating Emerging Technologies in Europe: Robotics Facing Law and Ethics (RoboLaw), funded under the 7th Framework Programme of the European Commission, and building on the results of a workshop that took place in November 2012 at the Tilburg Institute for Law, Technology, and Society of Tilburg University, the Netherlands.
- Published
- 2013
14. Laws on Robots, Laws by Robots, Laws in Robots: Regulating Robot Behaviour by Design
- Author
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Leenes, R.E., Lucivero, F., and TILT
- Subjects
ComputingMilieux_LEGALASPECTSOFCOMPUTING ,robots, techno-regulation, code, artificial intelligence, value sensitive design - Abstract
Speculation about robot morality is almost as old as the concept of a robot itself. Asimov’s three laws of robotics provide an early and well-discussed example of moral rules robots should observe. Despite the widespread influence of the three laws of robotics and their role in shaping visions of future robo-dense worlds, these laws have been neglected as futuristic by hands-on roboticists who have been busy with addressing less abstract questions about robots’ behaviour concerning space locomotion, obstacles avoidance, automatic learning, among others. Between morality and function lies a vast gap. When robots enter our everyday lives they will have to observe social and legal norms. For example, social robots in the hospitals are expected to observe social rules (they should not interrupt a mourning family) and robotic dust cleaners scouring the streets for waste as well as automated cars will have to observe traffic regulation. In this article we elaborate on the various ways in which robotic behaviour is regulated. We distinguish between imposing regulations on robots, imposing regulation by robots, and imposing regulation in robots. In doing this, we distinguish regulation that aims at influencing human behaviour and regulation whose scope is robots’ behaviour. We claim that the artificial agency of robots requires designers and regulators to look at the question of how to regulate robots’ behaviour in a way that renders it compliant with legal norms. Regulation by design offers a means for this. We further explore this idea through the example of automated cars.
- Published
- 2015
15. Sul monitoraggio etico delle interfacce cervello-macchina
- Author
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Lucivero F., TAMBURRINI, GUGLIELMO, Lucivero, F., and Tamburrini, Guglielmo
- Subjects
Brain-Computer Interface ,Philosophy of technology ,Ethic - Published
- 2007
16. Should I trust my gut feelings or keep them at a distance? A prospective analysis of point-of-care diagnostics practice
- Author
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Lucivero, F., Dalibert, L., Leenes, R., Kosta, E., Faculty of Behavioural, Management and Social Sciences, Philosophy, and TILT
- Subjects
METIS-298963 ,IR-87890 - Published
- 2013
17. The promises of emerging diagnostics: From scientists' visions to the lab bench and back
- Author
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Lucivero, F., van der Burg, S., Swierstra, T., and TILT
- Published
- 2013
18. Beyond therapy v. enhancement? Multidisciplinary analyses of a heated debate
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Lucivero, F., Vedder, A.H., and TILT
- Published
- 2013
19. The role of framing and metaphor in the therapy versus enhancement argument
- Author
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Koops, E.J., Lucivero, F., Vedder, A.H., and TILT
- Published
- 2013
20. Human enhancement on the slab: Dissecting some often used general distinctions and arguments in the ethical debate
- Author
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Vedder, A.H., Lucivero, F., and TILT
- Published
- 2013
21. If you're smart, we'll make you smarter: Applying the reasoning behind the development of honours programmes to other forms of cognitive enhancement
- Author
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Olthof, B., Peeters, A.C.P., Schelle, K., Haselager, W.F.G., Lucivero, F., and Vedder, A.
- Abstract
Students using Ritalin in preparation for their exams is a hotly debated issue, while meditating or drinking coffee before those same exams is deemed uncontroversial. However, taking Ritalin, meditating and drinking coffee or even education in general, can all be considered forms of cognitive enhancement. Although social acceptance might change in the future, it is interesting to examine the current reasons that are used to distinguish cases deemed problematic or unproblematic. Why are some forms of cognitive enhancement considered problematic, while others are not? In this paper, we consider cognitive enhancement as the amplification or extension of core capacities of the mind, using augmentation or improvements of our information-processing systems. We will analyse cognitive enhancement in an educational setting in order to clarify the fuzzy distinction between problematic and unproblematic forms of cognitive enhancement. We will show that the apparent distinction made by many people between problematic and unproblematic enhancement is not based on any fundamental difference between these two categories.
- Published
- 2013
22. Applying the reasoning behind the development of honours programmes to other forms of cognitive enhancement
- Author
-
Lucivero, F., Vedder, A., Olthof, B., Peeters, A., Schelle, K., Haselager, W.F.G., Lucivero, F., Vedder, A., Olthof, B., Peeters, A., Schelle, K., and Haselager, W.F.G.
- Abstract
Item does not contain fulltext, The debate on the ethical, social and legal impact of technologies enhancing human capabilities has been largely fed by philosophy and ethics scholars. These contributions offer arguments in favour or against the use and distribution of more or less specific types of enhancing technologies. Since authors' positions drastically vary from 'trans-' or 'post-' humanist claims about the desirability of these technologies to 'conservative' views opposed to those technologies and showing their dangers and perils, this debate is often heated and confused. The distinction between therapy and enhancement itself is exemplary in this respect. The distinction is often not meant to merely serve the theoretical purpose of creating definitional clarity; it is also often implicitly used to depict one class of actions as morally unproblematic (therapy) and another class of actions as morally problematic (enhancement). The debate on human enhancement is not only a matter of philosophical concern but it is also a hot topic in public and political discussions, with an increasing demand of European institutions for grounded recommendation concerning policies and governance of technologies for human enhancement. Therefore, on the one hand we have a heated debate that is a core interest of political institutions and, on the other hand, we have little reflection on the terms and concepts of this debate. This volume aims to fill this gap by providing analysis and clarification of the main trends, concepts, and assumptions of the debate. The essays in this volume examine the debate from a meta-level, analysing the discussion and mapping its arguments and conclusions, shedding new light on the traditional distinctions and assumptions in the debate on human enhancement from different disciplinary perspectives: law, ethics, philosophy of technology, science and technology studies, social sciences, engineering science, technology assessment and general regulation studies. This volume is one of th
- Published
- 2013
23. If you're smart, we'll make you smarter: Applying the reasoning behind the development of honours programmes to other forms of cognitive enhancement
- Author
-
Lucivero, F., Vedder, A., Olthof, B., Peeters, A.C.P., Schelle, K., Haselager, W.F.G., Lucivero, F., Vedder, A., Olthof, B., Peeters, A.C.P., Schelle, K., and Haselager, W.F.G.
- Abstract
Item does not contain fulltext, Students using Ritalin in preparation for their exams is a hotly debated issue, while meditating or drinking coffee before those same exams is deemed uncontroversial. However, taking Ritalin, meditating and drinking coffee or even education in general, can all be considered forms of cognitive enhancement. Although social acceptance might change in the future, it is interesting to examine the current reasons that are used to distinguish cases deemed problematic or unproblematic. Why are some forms of cognitive enhancement considered problematic, while others are not? In this paper, we consider cognitive enhancement as the amplification or extension of core capacities of the mind, using augmentation or improvements of our information-processing systems. We will analyse cognitive enhancement in an educational setting in order to clarify the fuzzy distinction between problematic and unproblematic forms of cognitive enhancement. We will show that the apparent distinction made by many people between problematic and unproblematic enhancement is not based on any fundamental difference between these two categories.
- Published
- 2013
24. Ethical monitoring of brain-machine interfaces
- Author
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Guglielmo Tamburrini, Federica Lucivero, Lucivero, F, and Tamburrini, Guglielmo
- Subjects
Potential impact ,Inclusion (disability rights) ,Personhood ,media_common.quotation_subject ,Monitoring problem ,Personal autonomy ,Applied ethics ,Human-Computer Interaction ,Philosophy ,Artificial Intelligence ,Personal identity ,Psychology ,Social psychology ,Autonomy ,media_common - Abstract
The ethical monitoring of brain-machine interfaces (BMIs) is discussed in connection with the potential impact of BMIs on distinguishing traits of persons, changes of personal identity, and threats to personal autonomy. It is pointed out that philosophical analyses of personhood are conducive to isolating an initial thematic framework for this ethical monitoring problem, but a contextual refinement of this initial framework depends on applied ethics analyses of current BMI models and empirical case-studies. The personal autonomy-monitoring problem is approached by identifying various ways in which the inclusion of a robotic controller in the motor pathway of an output BMI may limit or jeopardize personal autonomy.
- Published
- 2007
25. Nanomedicine in Europe: regulating under uncertainty
- Author
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Pachi, S., Lucivero, F., and Stuurman, C.
- Published
- 2013
26. A ‘Reflexive’ Approach to Therapy-Enhancement Distinction: Some Philosophical Considerations
- Author
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Carnevale, A, Battaglia, F, Lucivero, F, A. Vedder, Carnevale, A, and Battaglia, F
- Published
- 2013
27. Digital endpoints in clinical trials: emerging themes from a multi-stakeholder Knowledge Exchange event.
- Author
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Tackney MS, Steele A, Newman J, Fritzsche MC, Lucivero F, Khadjesari Z, Lynch J, Abbott RA, Barber VS, Carpenter JR, Copsey B, Davies EH, Dixon WG, Fox L, González J, Griffiths J, Hinchliffe CHL, Kolanko MA, McGagh D, Rodriguez A, Roussos G, So KBE, Stanton L, Toshner M, Varian F, Williamson PR, Yimer BB, and Villar SS
- Subjects
- Humans, Cooperative Behavior, Interdisciplinary Communication, Mobile Applications, Wearable Electronic Devices, Research Design, Smartphone, Clinical Trials as Topic methods, Stakeholder Participation, Endpoint Determination
- Abstract
Background: Digital technologies, such as wearable devices and smartphone applications (apps), can enable the decentralisation of clinical trials by measuring endpoints in people's chosen locations rather than in traditional clinical settings. Digital endpoints can allow high-frequency and sensitive measurements of health outcomes compared to visit-based endpoints which provide an episodic snapshot of a person's health. However, there are underexplored challenges in this emerging space that require interdisciplinary and cross-sector collaboration. A multi-stakeholder Knowledge Exchange event was organised to facilitate conversations across silos within this research ecosystem., Methods: A survey was sent to an initial list of stakeholders to identify potential discussion topics. Additional stakeholders were identified through iterative discussions on perspectives that needed representation. Co-design meetings with attendees were held to discuss the scope, format and ethos of the event. The event itself featured a cross-disciplinary selection of talks, a panel discussion, small-group discussions facilitated via a rolling seating plan and audience participation via Slido. A transcript was generated from the day, which, together with the output from Slido, provided a record of the day's discussions. Finally, meetings were held following the event to identify the key challenges for digital endpoints which emerged and reflections and recommendations for dissemination., Results: Several challenges for digital endpoints were identified in the following areas: patient adherence and acceptability; algorithms and software for devices; design, analysis and conduct of clinical trials with digital endpoints; the environmental impact of digital endpoints; and the need for ongoing ethical support. Learnings taken for next generation events include the need to include additional stakeholder perspectives, such as those of funders and regulators, and the need for additional resources and facilitation to allow patient and public contributors to engage meaningfully during the event., Conclusions: The event emphasised the importance of consortium building and highlighted the critical role that collaborative, multi-disciplinary, and cross-sector efforts play in driving innovation in research design and strategic partnership building moving forward. This necessitates enhanced recognition by funders to support multi-stakeholder projects with patient involvement, standardised terminology, and the utilisation of open-source software., (© 2024. The Author(s).)
- Published
- 2024
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28. Why digital innovation may not reduce healthcare's environmental footprint.
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Samuel G, Anderson GM, Lucivero F, and Lucassen A
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- Humans, Carbon Footprint, Digital Technology, Inventions, Delivery of Health Care
- Abstract
Competing Interests: Competing interests: We have read and understood BMJ policy on declaration of interests and declare that GS has funding from Wellcome (222180/Z/20/Z), and FL and GS are supported by an Engineering and Physical Sciences Research Council grant (EP/V042378/1) to their institution.
- Published
- 2024
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29. Carbon Accounting in the Digital Industry: The Need to Move towards Decision Making in Uncertainty.
- Author
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Samuel G, Lucivero F, Knowles B, and Wright K
- Abstract
In this paper, we present findings from a qualitative interview study, which highlights the difficulties and challenges with quantifying carbon emissions and discusses how to move productively through these challenges by drawing insights from studies of deep uncertainty. Our research study focuses on the digital sector and was governed by the following research question: how do practitioners researching, working, or immersed in the broad area of sustainable digitisation (researchers, industry, NGOs, and policy representatives) understand and engage with quantifying carbon? Our findings show how stakeholders struggled to measure carbon emissions across complex systems, the lack of standardisation to assist with this, and how these challenges led stakeholders to call for more data to address this uncertainty. We argue that these calls for more data obscure the fact that there will always be uncertainty, and that we must learn to govern from within it., Competing Interests: Conflicts of Interest: The authors declare no conflict of interest.
- Published
- 2024
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- View/download PDF
30. Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe.
- Author
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Kieslich K, Fiske A, Gaille M, Galasso I, Geiger S, Hangel N, Horn R, Lanzing M, Libert S, Lievevrouw E, Lucivero F, Marelli L, Prainsack B, Schönweitz F, Sharon T, Spahl W, Van Hoyweghen I, and Zimmermann BM
- Subjects
- Humans, Europe, Humanities, Qualitative Research, Pandemics, COVID-19
- Abstract
Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April-May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)
- Published
- 2023
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- View/download PDF
31. Understanding Pandemic Solidarity: Mutual Support During the First COVID-19 Lockdown in the United Kingdom.
- Author
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Johnson S, Roberts S, Hayes S, Fiske A, Lucivero F, McLennan S, Phillips A, Samuel G, and Prainsack B
- Abstract
Throughout the COVID-19 pandemic, the concept of solidarity has been invoked frequently. Much interest has centred around how citizens and communities support one another during times of uncertainty. Yet, empirical research which accounts and understands citizen's views on pandemic solidarity, or their actual practices has remained limited. Drawing upon the analysis of data from 35 qualitative interviews, this article investigates how residents in England and Scotland enacted, understood, or criticised (the lack of) solidarity during the first national lockdown in the United Kingdom in April 2020-at a time when media celebrated solidarity as being at an all-time high. It finds that although solidarity was practiced by some people, the perceived lack of solidarity was just as pronounced. We conclude that despite frequent mobilisations of solidarity by policy makers and other public actors, actual practices of solidarity are poorly understood-despite the importance of solidarity for public health and policy., (© The Author(s) 2023. Published by Oxford University Press.)
- Published
- 2023
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- View/download PDF
32. Correction: Ethical challenges of using remote monitoring technologies for clinical research: A case study of the role of local research ethics committees in the RADAR-AD study.
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Muurling M, Pasmooij AMG, Koychev I, Roik D, Froelich L, Schwertner E, Religa D, Abdelnour C, Boada M, Almici M, Galluzzi S, Cardoso S, de Mendonça A, Owens AP, Kuruppu S, Gjestsen MT, Lazarou I, Gkioka M, Tsolaki M, Diaz A, Gove D, Visser PJ, Aarsland D, Lucivero F, and de Boer C
- Abstract
[This corrects the article DOI: 10.1371/journal.pone.0285807.]., (Copyright: © 2023 Muurling et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
- Published
- 2023
- Full Text
- View/download PDF
33. Ethical challenges of using remote monitoring technologies for clinical research: A case study of the role of local research ethics committees in the RADAR-AD study.
- Author
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Muurling M, Pasmooij AMG, Koychev I, Roik D, Froelich L, Schwertner E, Religa D, Abdelnour C, Boada M, Almici M, Galluzzi S, Cardoso S, de Mendonça A, Owens AP, Kuruppu S, Gjestsen MT, Lazarou I, Gkioka M, Tsolaki M, Diaz A, Gove D, Visser PJ, Aarsland D, Lucivero F, and de Boer C
- Subjects
- Humans, Ethical Review, Ethics, Research, Europe, Ethics Committees, Research, Alzheimer Disease
- Abstract
Introduction: Clinical research with remote monitoring technologies (RMTs) has multiple advantages over standard paper-pencil tests, but also raises several ethical concerns. While several studies have addressed the issue of governance of big data in clinical research from the legal or ethical perspectives, the viewpoint of local research ethics committee (REC) members is underrepresented in the current literature. The aim of this study is therefore to find which specific ethical challenges are raised by RECs in the context of a large European study on remote monitoring in all syndromic stages of Alzheimer's disease, and what gaps remain., Methods: Documents describing the REC review process at 10 sites in 9 European countries from the project Remote Assessment of Disease and Relapse-Alzheimer's Disease (RADAR-AD) were collected and translated. Main themes emerging in the documents were identified using a qualitative analysis approach., Results: Four main themes emerged after analysis: data management, participant's wellbeing, methodological issues, and the issue of defining the regulatory category of RMTs. Review processes differed across sites: process duration varied from 71 to 423 days, some RECs did not raise any issues, whereas others raised up to 35 concerns, and the approval of a data protection officer was needed in half of the sites., Discussion: The differences in the ethics review process of the same study protocol across different local settings suggest that a multi-site study would benefit from a harmonization in research ethics governance processes. More specifically, some best practices could be included in ethical reviews across institutional and national contexts, such as the opinion of an institutional data protection officer, patient advisory board reviews of the protocol and plans for how ethical reflection is embedded within the study., Competing Interests: The authors have read the journal’s policy and have the following competing interests: IK is a paid medical advisor for digital healthcare technology companies Five Lives SAS and Cognetivity Ltd., outside the submitted work. CA has received honoraria as speaker from F. Hoffmann-La Roche Ltd, Zambon, Nutricia, Schwabe Farma Ibérica S.A.U, outside of the submitted work. CA is a member of the Board of Directors of the Lewy Body Dementia Association, outside the submitted work. DA has received research support and/or honoraria from Astra-Zeneca, H. Lundbeck, Novartis Pharmaceuticals, Biogen, and GE Health, and served as paid consultant for H. Lundbeck, Eisai, Heptares, Mentis Cura, and Roche Diagnostics, outside the submitted work. MB is an employee of the Ace Alzheimer Center and an advisory board member for Grifols, Roche, Eli Lilly, Araclon Biotech, Merck, Zambon, Biogen, Novo Nordisk, Bioiberica, Eisai, Servier, and Schwabe Pharma, outside the submitted work. This does not alter our adherence to PLOS ONE policies on sharing data and materials. All other authors have declared that no competing interests exist. There are no patents, products in development or marketed products associated with this research to declare., (Copyright: © 2023 Muurling et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
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- 2023
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34. The impact of artificial intelligence on the person-centred, doctor-patient relationship: some problems and solutions.
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Sauerbrei A, Kerasidou A, Lucivero F, and Hallowell N
- Subjects
- Humans, Empathy, Patient-Centered Care, Trust, Physician-Patient Relations, Artificial Intelligence
- Abstract
Artificial intelligence (AI) is often cited as a possible solution to current issues faced by healthcare systems. This includes the freeing up of time for doctors and facilitating person-centred doctor-patient relationships. However, given the novelty of artificial intelligence tools, there is very little concrete evidence on their impact on the doctor-patient relationship or on how to ensure that they are implemented in a way which is beneficial for person-centred care.Given the importance of empathy and compassion in the practice of person-centred care, we conducted a literature review to explore how AI impacts these two values. Besides empathy and compassion, shared decision-making, and trust relationships emerged as key values in the reviewed papers. We identified two concrete ways which can help ensure that the use of AI tools have a positive impact on person-centred doctor-patient relationships. These are (1) using AI tools in an assistive role and (2) adapting medical education. The study suggests that we need to take intentional steps in order to ensure that the deployment of AI tools in healthcare has a positive impact on person-centred doctor-patient relationships. We argue that the proposed solutions are contingent upon clarifying the values underlying future healthcare systems., (© 2023. The Author(s).)
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- 2023
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35. Systems thinking and efficiency under emissions constraints: Addressing rebound effects in digital innovation and policy.
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Widdicks K, Lucivero F, Samuel G, Croxatto LS, Smith MT, Holter CT, Berners-Lee M, Blair GS, Jirotka M, Knowles B, Sorrell S, Rivera MB, Cook C, Coroamă VC, Foxon TJ, Hardy J, Hilty LM, Hinterholzer S, and Penzenstadler B
- Abstract
Innovations and efficiencies in digital technology have lately been depicted as paramount in the green transition to enable the reduction of greenhouse gas emissions, both in the information and communication technology (ICT) sector and the wider economy. This, however, fails to adequately account for rebound effects that can offset emission savings and, in the worst case, increase emissions. In this perspective, we draw on a transdisciplinary workshop with 19 experts from carbon accounting, digital sustainability research, ethics, sociology, public policy, and sustainable business to expose the challenges of addressing rebound effects in digital innovation processes and associated policy. We utilize a responsible innovation approach to uncover potential ways forward for incorporating rebound effects in these domains, concluding that addressing ICT-related rebound effects ultimately requires a shift from an ICT efficiency-centered perspective to a "systems thinking" model, which aims to understand efficiency as one solution among others that requires constraints on emissions for ICT environmental savings to be realized., Competing Interests: M.B.-L. is the founder and principal consultant of Small World Consulting. C.C. works at Baillie Gifford, which is a commercial entity. G.S.B. is a member of the Patterns advisory board., (© 2023 The Author(s).)
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- 2023
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36. Democratic research: Setting up a research commons for a qualitative, comparative, longitudinal interview study during the COVID-19 pandemic.
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Zimmermann BM, Wagenaar H, Kieslich K, Prainsack B, Meyers G, Buyx A, El-Sayed S, Fiske A, Galasso I, Geiger S, Hangel N, Horn R, Johnson S, Kuiper JML, Lucivero F, McLennan S, Paul KT, Pot M, Radhuber I, Samuel G, Sharon T, Siffels L, Van Hoyweghen I, Awad S, Bourgeron T, Eichinger J, Gaille M, Haddad C, Hayes S, Hoffman A, Jasser M, Kenens J, Lanzing M, Libert S, Lievevrouw E, Marelli L, Ongolly F, Phillips A, Pinel C, Riesinger K, Roberts S, Saxinger G, Schlogl L, Schönweitz F, Sierawska A, Spahl W, Stendahl E, Vanstreels S, Vidolov S, and Weiss E
- Abstract
The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2022 The Authors.)
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- 2022
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37. Bringing ethics into governance: the case of the UK COVID-19 contact tracing app.
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Samuel G and Lucivero F
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Purpose: In April 2020, it was announced that NHSX, a unit of the UK National Health Service (NHS) responsible for digital innovation, was developing a contact tracing app that would offer a digital solution to managing the COVID-19 pandemic. Despite the urgency with which the app was developed, a clear commitment was made to designing the technology in a way that enshrined key ethical principles, and an ethics advisory board (EAB) was established to provide timely advice, guidance and recommendations on associated ethical issues. Alongside this, there were extensive criticisms of how NHSX adhered to ethical principles in the handling of the app development-criticisms that require empirical exploration. This paper explores how ethics was incorporated into decision-making during governance processes associated with the development of app., Design/methodology/approach: Interviews were conducted with those involved in the app's development/governance, those with a consulting role associated with the app, or those who sat on the EAB., Findings: The EAB fulfilled an important role by introducing ethical considerations to app developers. Though at times, it was difficult to accommodate key ethics principles into governance processes, which sometimes suffered from little accountability., Originality/value: While several articles have provided overviews of ethical issues, or explored public perceptions towards contact tracing apps, to the best the authors, knowledge this is the first empirical piece analysing ethics governance issues via stakeholder interviews.
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- 2022
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38. Digital/computational phenotyping: What are the differences in the science and the ethics?
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Lucivero F and Hallowell N
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The concept of 'digital phenotyping' was originally developed by researchers in the mental health field, but it has travelled to other disciplines and areas. This commentary draws upon our experiences of working in two scientific projects that are based at the University of Oxford's Big Data Institute - The RADAR-AD project and The Minerva Initiative - which are developing algorithmic phenotyping technologies. We describe and analyse the concepts of digital biomarkers and computational phenotyping that underlie these projects, explain how they are linked to other research in digital phenotyping and compare and contrast some of their epistemological and ethical implications. In particular, we argue that the phenotyping paradigm in both projects is grounded on an assumption of 'objectivity' that is articulated in different ways depending on the role that is given to the computational/digital tools. Using the concept of 'affordance', we show how specific functionalities relate to potential uses and social implications of these technologies and argue that it is important to distinguish among them as the concept of digital phenotyping is increasingly being used with a variety of meanings., Competing Interests: This communication reflects the views of the RADAR-AD consortium and neither IMI nor the European Union and EFPIA are liable for any use that may be made of the information contained herein., (© The Author(s) 2021.)
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- 2021
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39. Ecologies of Public Trust: The NHS COVID-19 Contact Tracing App.
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Samuel G, Lucivero F, Johnson S, and Diedericks H
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- Communicable Disease Control, Contact Tracing, Humans, SARS-CoV-2, State Medicine, Trust, COVID-19, Mobile Applications
- Abstract
In April 2020, close to the start of the first U.K. COVID-19 lockdown, the U.K. government announced the development of a COVID-19 contact tracing app, which was later trialled on the U.K. island, the Isle of Wight, in May/June 2020. United Kingdom surveys found general support for the development of such an app, which seemed strongly influenced by public trust. Institutions developing the app were called upon to fulfil the commitment to public trust by acting with trustworthiness. Such calls presuppose that public trust associated with the app can emerge if the conditions for trustworthiness are met and that public trust is simplistic, i.e., linearly the sum of each member of the publics' individual - U.K. government trust relationship. Drawing on a synthesis of the trust literature and fifteen interviews with members of the public trialling the app on the Isle of Wight, this paper aims to explore what trust mechanisms and relationships are at play when thinking about public trust in the context of the U.K. COVID-19 app. We argue that public trust is a complex social phenomenon and not linearly correlated with institutional trustworthiness. As such, attention needs to widen from calls for trustworthy infrastructures as a way to build public trust, to a deeper understanding of those doing the trusting; in particular, what or whom do people place their trust in (or not) when considering whether using the app and why. An understanding of this will help when trying to secure public trust during the implementation of necessary public health measures., (© 2021. The Author(s).)
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- 2021
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40. Normative positions towards COVID-19 contact-tracing apps: findings from a large-scale qualitative study in nine European countries.
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Lucivero F, Marelli L, Hangel N, Zimmermann BM, Prainsack B, Galasso I, Horn R, Kieslich K, Lanzing M, Lievevrouw E, Ongolly F, Samuel G, Sharon T, Siffels L, Stendahl E, and Van Hoyweghen I
- Abstract
Mobile applications for digital contact tracing have been developed and introduced around the world in response to the COVID-19 pandemic. Proposed as a tool to support 'traditional' forms of contact-tracing carried out to monitor contagion, these apps have triggered an intense debate with respect to their legal and ethical permissibility, social desirability and general feasibility. Based on a large-scale study including qualitative data from 349 interviews conducted in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, the Netherlands, German-speaking Switzerland, the United Kingdom), this paper shows that the binary framing often found in surveys and polls, which contrasts privacy concerns with the usefulness of these interventions for public health, does not capture the depth, breadth, and nuances of people's positions towards COVID-19 contact-tracing apps. The paper provides a detailed account of how people arrive at certain normative positions by analysing the argumentative patterns, tropes and (moral) repertoires underpinning people's perspectives on digital contact-tracing. Specifically, we identified a spectrum comprising five normative positions towards the use of COVID-19 contact-tracing apps: opposition, scepticism of feasibility, pondered deliberation, resignation , and support . We describe these stances and analyse the diversity of assumptions and values that underlie the normative orientations of our interviewees. We conclude by arguing that policy attempts to develop and implement these and other digital responses to the pandemic should move beyond the reiteration of binary framings, and instead cater to the variety of values, concerns and expectations that citizens voice in discussions about these types of public health interventions., Competing Interests: No potential conflict of interest was reported by the author(s)., (© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)
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- 2021
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41. Remote monitoring technologies in Alzheimer's disease: design of the RADAR-AD study.
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Muurling M, de Boer C, Kozak R, Religa D, Koychev I, Verheij H, Nies VJM, Duyndam A, Sood M, Fröhlich H, Hannesdottir K, Erdemli G, Lucivero F, Lancaster C, Hinds C, Stravopoulos TG, Nikolopoulos S, Kompatsiaris I, Manyakov NV, Owens AP, Narayan VA, Aarsland D, and Visser PJ
- Subjects
- Caregivers, Europe, Humans, Neuropsychological Tests, Technology, Alzheimer Disease diagnosis
- Abstract
Background: Functional decline in Alzheimer's disease (AD) is typically measured using single-time point subjective rating scales, which rely on direct observation or (caregiver) recall. Remote monitoring technologies (RMTs), such as smartphone applications, wearables, and home-based sensors, can change these periodic subjective assessments to more frequent, or even continuous, objective monitoring. The aim of the RADAR-AD study is to assess the accuracy and validity of RMTs in measuring functional decline in a real-world environment across preclinical-to-moderate stages of AD compared to standard clinical rating scales., Methods: This study includes three tiers. For the main study, we will include participants (n = 220) with preclinical AD, prodromal AD, mild-to-moderate AD, and healthy controls, classified by MMSE and CDR score, from clinical sites equally distributed over 13 European countries. Participants will undergo extensive neuropsychological testing and physical examination. The RMT assessments, performed over an 8-week period, include walk tests, financial management tasks, an augmented reality game, two activity trackers, and two smartphone applications installed on the participants' phone. In the first sub-study, fixed sensors will be installed in the homes of a representative sub-sample of 40 participants. In the second sub-study, 10 participants will stay in a smart home for 1 week. The primary outcome of this study is the difference in functional domain profiles assessed using RMTs between the four study groups. The four participant groups will be compared for each RMT outcome measure separately. Each RMT outcome will be compared to a standard clinical test which measures the same functional or cognitive domain. Finally, multivariate prediction models will be developed. Data collection and privacy are important aspects of the project, which will be managed using the RADAR-base data platform running on specifically designed biomedical research computing infrastructure., Results: First results are expected to be disseminated in 2022., Conclusion: Our study is well placed to evaluate the clinical utility of RMT assessments. Leveraging modern-day technology may deliver new and improved methods for accurately monitoring functional decline in all stages of AD. It is greatly anticipated that these methods could lead to objective and real-life functional endpoints with increased sensitivity to pharmacological agent signal detection.
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- 2021
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42. Responsible Open Science: Moving towards an Ethics of Environmental Sustainability.
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Samuel G and Lucivero F
- Abstract
The integration of open science as a key pillar of responsible research and innovation has led it to become a hallmark of responsible research. However, ethical, social and regulatory challenges still remain about the implementation of an internationally- and multi-sector-recognised open science framework. In this Commentary, we discuss one important specific challenge that has received little ethical and sociological attention in the open science literature: the environmental impact of the digital infrastructure that enables open science. We start from the premise that a move towards an environmentally sustainable open science is a shared and valuable goal, and discuss two challenges that we foresee with relation to this. The first relates to questions about how to define what environmentally sustainable open science means and how to change current practices accordingly. The second relates to the infrastructure needed to enact environmentally sustainable open science ethical and social responsibilities through the open science ethics ecosystem. We argue that there are various ethical obstacles regarding how to responsibly balance any environmental impacts against the social value of open science, and how much one should be prioritised over the other. We call for all actors of the open science ethics ecosystem to engage in discussions about how to move towards open data and science initiatives that take into account the environmental impact of data and digital infrastructures. Furthermore, we call for ethics governance frameworks or policy-inscribed standards of practice to assist with this decision-making., Competing Interests: Conflicts of Interest: The authors declare no conflict of interest.
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- 2020
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43. SERIES: eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice.
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Boers SN, Jongsma KR, Lucivero F, Aardoom J, Büchner FL, de Vries M, Honkoop P, Houwink EJF, Kasteleyn MJ, Meijer E, Pinnock H, Teichert M, van der Boog P, van Luenen S, van der Kleij RMJJ, and Chavannes NH
- Subjects
- Humans, Machine Learning, Personal Autonomy, Persuasive Communication, Physician's Role, Physician-Patient Relations, Precision Medicine, Decision Making, Shared, Decision Support Systems, Clinical ethics, Primary Health Care, Role, Self-Management ethics, Telemedicine ethics
- Abstract
Background: eHealth promises to increase self-management and personalised medicine and improve cost-effectiveness in primary care. Paired with these promises are ethical implications, as eHealth will affect patients' and primary care professionals' (PCPs) experiences, values, norms, and relationships. Objectives: We argue what ethical implications related to the impact of eHealth on four vital aspects of primary care could (and should) be anticipated. Discussion: (1) EHealth influences dealing with predictive and diagnostic uncertainty. Machine-learning based clinical decision support systems offer (seemingly) objective, quantified, and personalised outcomes. However, they also introduce new loci of uncertainty and subjectivity. The decision-making process becomes opaque, and algorithms can be invalid, biased, or even discriminatory. This has implications for professional responsibilities and judgments, justice, autonomy, and trust. (2) EHealth affects the roles and responsibilities of patients because it can stimulate self-management and autonomy. However, autonomy can also be compromised, e.g. in cases of persuasive technologies and eHealth can increase existing health disparities. (3) The delegation of tasks to a network of technologies and stakeholders requires attention for responsibility gaps and new responsibilities. (4) The triangulate relationship: patient-eHealth-PCP requires a reconsideration of the role of human interaction and 'humanness' in primary care as well as of shaping Shared Decision Making. Conclusion: Our analysis is an essential first step towards setting up a dedicated ethics research agenda that should be examined in parallel to the development and implementation of eHealth. The ultimate goal is to inspire the development of practice-specific ethical recommendations.
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- 2020
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44. COVID-19 and Contact Tracing Apps: Ethical Challenges for a Social Experiment on a Global Scale.
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Lucivero F, Hallowell N, Johnson S, Prainsack B, Samuel G, and Sharon T
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- Access to Information, Humans, Privacy, Public Health, SARS-CoV-2, COVID-19, Contact Tracing ethics, Mobile Applications ethics
- Abstract
Mobile applications are increasingly regarded as important tools for an integrated strategy of infection containment in post-lockdown societies around the globe. This paper discusses a number of questions that should be addressed when assessing the ethical challenges of mobile applications for digital contact-tracing of COVID-19: Which safeguards should be designed in the technology? Who should access data? What is a legitimate role for "Big Tech" companies in the development and implementation of these systems? How should cultural and behavioural issues be accounted for in the design of these apps? Should use of these apps be compulsory? What does transparency and ethical oversight mean in this context? We demonstrate that responses to these questions are complex and contingent and argue that if digital contract-tracing is used, then it should be clear that this is on a trial basis and its use should be subject to independent monitoring and evaluation.
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- 2020
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45. How does the use of digital consulting change the meaning of being a patient and/or a health professional? Lessons from the Long-term Conditions Young People Networked Communication study.
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Sturt J, Huxley C, Ajana B, Gainty C, Gibbons C, Graham T, Khadjesari Z, Lucivero F, Rogers R, Smol A, Watkins JA, and Griffiths F
- Abstract
Background: While studies have examined the impact of digital communication technology on healthcare, there is little exploration of how new models of digital care change the roles and identities of the health professional and patient. The purpose of the current study is to generate multidisciplinary reflections and questions around the use of digital consulting and the way it changes the meaning of being a patient and/or a health professional., Method: We used a large pre-existing qualitative dataset from the Long-term Conditions Young People Networked Communication (LYNC) study which involved interviews with healthcare professionals and a group of 16-24 years patients with long-term physical and mental health conditions. We conducted a three-stage mixed methods analysis. First, using a small sample of interview data from the LYNC study, we identified three key themes to explore in the data and relevant academic literature. Second, in small groups we conducted secondary analysis of samples of patient and health professional LYNC interview data. Third, we ran a series of rapid evidence reviews., Findings: We identified three key themes: workload/flow, impact of increased access to healthcare and vulnerabilities. Both health professionals and patients were 'on duty' in their role more often. Increased access to healthcare introduced more responsibilities to both patients and health professionals. Traditional concepts in medical ethics, confidentiality, empathy, empowerment/power, efficiency and mutual responsibilities are reframed in the context of digital consulting., Conclusions: Our collaboration identified conflicts and constraints in the construction of digital patients and digital clinicians. There is evidence that digital technologies change the nature of a medical consultation and with it the identities and the roles of clinicians and patients which, in turn, calls for a redefinition of traditional concepts of medical ethics. Overall, digital consulting has the potential to significantly reduce costs while maintaining or improving patient care and clinical outcomes. Timely study of digital engagement in the National Health Service is a matter of critical importance., (© The Author(s) 2020.)
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- 2020
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46. Big Data, Big Waste? A Reflection on the Environmental Sustainability of Big Data Initiatives.
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Lucivero F
- Subjects
- Big Data, Technology
- Abstract
This paper addresses a problem that has so far been neglected by scholars investigating the ethics of Big Data and policy makers: that is the ethical implications of Big Data initiatives' environmental impact. Building on literature in environmental studies, cultural studies and Science and Technology Studies, the article draws attention to the physical presence of data, the material configuration of digital service, and the space occupied by data. It then explains how this material and situated character of data raises questions concerning the ethics of the increasingly fashionable Big Data discourses. It argues that attention should be paid to (1) the vocabulary currently used when discussing the governance of data initiatives; (2) the internal tension between current data initiatives and environmental policies; (3) issues of fair distribution. The article explains how taking into account these aspects would allow for a more responsible behaviour in the context of data storage and production.
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- 2020
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47. The Shared Decision Making of Older Adults in Healthcare.
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Pusey E, Tinker A, and Lucivero F
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Purpose: The research question for this paper was: what are older adults' experiences of shared decision-making in a healthcare setting? This involved: Exploring older adults' experiences and opinions of decision-making in a healthcare setting;Understanding what shared decision-making means to older adults., Design and Method: A qualitative study using face-to-face, semi-structured interviews with adults over 65 years. Thematic analysis was used., Participants: Eight adults with a mean age of 76 years., Findings: Three broad themes were identified which ascribed roles to individuals involved in decision making. This includes the way in which older adults felt they should be involved actively: by asking questions and knowing their own body. The doctors' role was described as assistive by facilitating discussion, giving options and advice. The role of the family was also explored; older adults felt the family could impact on their decisions in both a direct and indirect way. There was some confusion about what constituted a decision., Conclusion: Older adults described what having an active role in decision making meant for them, but expected an assistive role from clinicians. They see their family as having an important role., Research Limitations/implications: This was a small qualitative study in one market town in England., Practical Implications: Clinicians should facilitate the involvement of older adults in shared decision making and consider how they can increase awareness of this. They should also involve the family in decision making., Originality/value: There are limited studies which look at this issue in depth.
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- 2019
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48. A mobile revolution for healthcare? Setting the agenda for bioethics.
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Lucivero F and Jongsma KR
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- Bioethics, Cost-Benefit Analysis, Delivery of Health Care economics, Delivery of Health Care ethics, Humans, Preventive Medicine economics, Preventive Medicine ethics, Self Care economics, Delivery of Health Care trends, Preventive Medicine trends, Self Care ethics, Telemedicine economics, Telemedicine ethics, Telemedicine trends
- Abstract
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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2018
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49. Digital Medicine: An Opportunity to Revisit the Role of Bioethicists.
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Jongsma KR, Bredenoord AL, and Lucivero F
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- Ethicists, Humans, Trust, Bioethics, Ethics Consultation
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- 2018
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50. Beyond individualism: Is there a place for relational autonomy in clinical practice and research?
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Dove ES, Kelly SE, Lucivero F, Machirori M, Dheensa S, and Prainsack B
- Abstract
The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of 'relational autonomy' in particular have argued that people's identities, needs, interests - and indeed autonomy - are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person's care and responsibility for connected others.
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- 2017
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