Mapping the Ethical Issues of Digital Twins for Personalised Healthcare Service (Preprint)

2021 ◽  
Author(s):  
Pei-hua Huang ◽  
Ki-hun Kim ◽  
Maartje Schermer

BACKGROUND The concept of digital twins has great potential for transforming the existing healthcare system by making it more personalised. As a convergence of healthcare, artificial intelligence, and information and communication technologies, personalised healthcare services developed under the concept of digital twins raise a myriad of ethical issues. While some of the ethical issues are known to researchers working on digital health and personalised medicine, currently there is no comprehensive review that maps major ethical risks of digital twins for personalised healthcare services. OBJECTIVE This paper fills the research gap by identifying major ethical risks of digital twins for personalised healthcare services. We first propose a working definition for digital twins for personalised healthcare services (DTPHS) to facilitate future discussion on the ethical issues related to these emerging digital health services. We then developed a process-oriented ethical map to identify major ethical risks against each of the different data processing phases. METHODS This research aims to address this research gap by providing a comprehensive analysis of major ethical risks of DTPHSs. Due to the scarcity of literature on DTPHSs, we are unable to perform a systematic review of ethical concerns over DTPHSs. Thus, we resort to literature on eHealth, personalised medicine, precision medicine, and information engineering to identify potential issues. We develop a process-oriented ethical map to structure the inquiry in a more systematic way. The ethical map allows us to see how each of the major ethical concerns emerges during the process of transforming raw data into valuable information. RESULTS The process-oriented ethical analysis identified ten operational problems and the relevant ethical values. By structuring the operational problems and relevant ethical values in a clear logical flow, this process-oriented ethical map allows developers of DTPHSs and stakeholders to have a comprehensive overview of major ethical risks while refining the design of DTPHSs. The ethical values section on the map also helps developers of DTPHSs better understand which values they ought to consider while developing solutions for an operational problem they encounter.   CONCLUSIONS It is challenging to address all of the major ethical risks a DTPHS might encounter proactively without a conceptual map at hand. The process-oriented ethical map we propose here can assist developers of DTPHSs in analysing ethical risks in a more systematic manner. CLINICALTRIAL N/A

2019 ◽  
Author(s):  
Jessica Morley

Healthcare systems across the globe are struggling with increasing costs and worsening outcomes. This presents those responsible for overseeing healthcare with a challenge. Increasingly, policymakers, politicians, clinical entrepreneurs and computer and data scientists argue that a key part of the solution will be ‘Artificial Intelligence’ (AI) – particularly Machine Learning (ML). This argument stems not from the belief that all healthcare needs will soon be taken care of by “robot doctors.” Instead, it is an argument that rests on the classic counterfactual definition of AI as an umbrella term for a range of techniques that can be used to make machines complete tasks in a way that would be considered intelligent were they to be completed by a human. Automation of this nature could offer great opportunities for the improvement of healthcare services and ultimately patients’ health by significantly improving human clinical capabilities in diagnosis, drug discovery, epidemiology, personalised medicine, and operational efficiency. However, if these AI solutions are to be embedded in clinical practice, then at least three issues need to be considered: the technical possibilities and limitations; the ethical, regulatory and legal framework; and the governance framework. In this article, we report on the results of a systematic analysis designed to provide a clear overview of the second of these elements: the ethical, regulatory and legal framework. We find that ethical issues arise at six levels of abstraction (individual, interpersonal, group, institutional, sectoral, and societal) and can be categorised as epistemic, normative, or overarching. We conclude by stressing how important it is that the ethical challenges raised by implementing AI in healthcare settings are tackled proactively rather than reactively and map the key considerations for policymakers to each of the ethical concerns highlighted.


2021 ◽  
Vol 11 (8) ◽  
pp. 745
Author(s):  
Maged N. Kamel Boulos ◽  
Peng Zhang

A digital twin is a virtual model of a physical entity, with dynamic, bi-directional links between the physical entity and its corresponding twin in the digital domain. Digital twins are increasingly used today in different industry sectors. Applied to medicine and public health, digital twin technology can drive a much-needed radical transformation of traditional electronic health/medical records (focusing on individuals) and their aggregates (covering populations) to make them ready for a new era of precision (and accuracy) medicine and public health. Digital twins enable learning and discovering new knowledge, new hypothesis generation and testing, and in silico experiments and comparisons. They are poised to play a key role in formulating highly personalised treatments and interventions in the future. This paper provides an overview of the technology’s history and main concepts. A number of application examples of digital twins for personalised medicine, public health, and smart healthy cities are presented, followed by a brief discussion of the key technical and other challenges involved in such applications, including ethical issues that arise when digital twins are applied to model humans.


2019 ◽  
Vol 7 (1) ◽  
Author(s):  
Charles Tembo ◽  
Allan Maganga ◽  
Peterson Dewah

 This article presents various points of view regarding the treatment of sunken fontanelle by various communities as ignited by the controversial practice of kutara(a practice that involves the father of a child sliding his penis from the lower part of the left and right cheeks to the top of the head, as well as from the lower part of the face to the top of the head, and from the lower back part of the head to the top). The story of Alick Macheso’s use of his manhood to treat nhova (sunken fontanelle) opened a Pandora’s box. The story not only attracted the attention of critics from diverse cultural and ethical backgrounds, but revealed multi-ethnic positions. That is, reactions were steeped in a multiplicity of intellectual, religious and even cultural grounding. Reactions ranged from accusations of backwardness and absurdity, through to medical and Christian orientations toward the treatment of nhova. The overarching idea is that there is a general tendency to dismiss the age-old practice of kutara,coupled with an uncritical celebration of certain positions. The debate that ensued following publication of the story seemed to revolve around ethical considerations. The school of thought that dismisses kutara with disdain regards it as unethical and unimaginable in the present-day world—it is redolent with insinuations of absurdity on the part of those that live and celebrate it. We contend that the raging debate that followed the publication of the story can best be conceptualised within the context of African ethics. We note that kutara has relevance to the spirituality, ethical values, privacy, and protection of children’s rights, among other ethical issues. It is hoped that the article will stir further debate and encourage more research among information practitioners, scholars and researchers into the ethical issues surrounding the treatment of sunken fontanelle in various African communities. It argues for an Afrocentric conceptualisation of phenomena in order to contribute to debates on the renaissance of African cultures, and stresses that it is imperative to harness the life-furthering age-old traditions in African ontological existence.


Author(s):  
Nicholas Evans ◽  
Thomas Inglesby

This chapter introduces ethical issues that arise in the context of biosecurity: policies and actions intended to prevent the development or emergence, or mitigate the consequences, of serious biological threats. These threats could include deliberate biological weapon attacks (bioterrorism), pandemics, emerging infectious diseases, or major laboratory accidents. The basic values that underpin these public health concerns are first introduced. Ethical issues that arise before, during, and following a biosecurity crisis are then examined, including issues of resource allocation, dual-use research, and the possibility of quarantine. Their resolution requires trade-offs among different ethical values, including utility, fairness, and liberty.


2021 ◽  
Vol 27 (1) ◽  
Author(s):  
Alex McKeown ◽  
Miranda Mourby ◽  
Paul Harrison ◽  
Sophie Walker ◽  
Mark Sheehan ◽  
...  

AbstractData platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.


2021 ◽  
Vol 10 (2) ◽  
pp. 36
Author(s):  
Michael Weinhardt

While big data (BD) has been around for a while now, the social sciences have been comparatively cautious in its adoption for research purposes. This article briefly discusses the scope and variety of BD, and its research potential and ethical implications for the social sciences and sociology, which derive from these characteristics. For example, BD allows for the analysis of actual (online) behavior and the analysis of networks on a grand scale. The sheer volume and variety of data allow for the detection of rare patterns and behaviors that would otherwise go unnoticed. However, there are also a range of ethical issues of BD that need consideration. These entail, amongst others, the imperative for documentation and dissemination of methods, data, and results, the problems of anonymization and re-identification, and the questions surrounding the ability of stakeholders in big data research and institutionalized bodies to handle ethical issues. There are also grave risks involved in the (mis)use of BD, as it holds great value for companies, criminals, and state actors alike. The article concludes that BD holds great potential for the social sciences, but that there are still a range of practical and ethical issues that need addressing.


2021 ◽  
pp. 1-1
Author(s):  
Alessandro Ricci ◽  
Angelo Croatti ◽  
Sara Montagna
Keyword(s):  

2021 ◽  
Vol 13 (2) ◽  
pp. 179-194
Author(s):  
Serene Ong ◽  
Jeffrey Ling ◽  
Angela Ballantyne ◽  
Tamra Lysaght ◽  
Vicki Xafis

AbstractGovernments are investing in precision medicine (PM) with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication and threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed.


2016 ◽  
Vol 25 (3) ◽  
pp. 554-556
Author(s):  
Jason Lesandrini ◽  
Carol O’Connell

Ethical issues in long-term care settings, although having received attention in the literature, have not in our opinion received the appropriate level they require. Thus, we applaud the Cambridge Quarterly for publishing this case. We can attest to the significance of ethical issues arising in long-term care facilities, as Mr. Hope’s case is all too familiar to those practicing in these settings. What is unique about this case is that an actual ethics consult was made in a long-term care setting. We have seen very little in the published literature on the use of ethics structures in long-term care populations. Our experience is that these healthcare settings are ripe for ethical concerns and that providers, patients, families, and staff need/desire ethics resources to actively and preventively address ethical concerns. The popular press has begun to recognize the ethical issues involved in long-term care settings and the need for ethics structures. Recently, in California a nurse refused to initiate CPR for an elderly patient in a senior residence. In that case, the nurse was quoted as saying that the facility had a policy that nurses were not to start CPR for elderly patients.1 Although this case is not exactly the same as that of Mr. Hope, it highlights the need for developing robust ethics program infrastructures in long-term care settings that work toward addressing ethical issues through policy, education, and active consultation.


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