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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DOBA, EMUNI, FZAB, GEOZS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NUK, OBVAL, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
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.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Digital phenotyping for mental health is an emerging trend which uses digital data, derived from mobile applications, wearable technologies and digital sensors, to measure, track and predict the ...mental health of an individual. Digital phenotyping for mental health is a growing, but as yet underexamined, field. As we will show, the rapid growth of digital phenotyping for mental health raises crucial questions about the values that underpin and are reinforced by this technology, as well as regarding to whom it may become valuable. In this commentary, we explore these questions by focusing on the construction of value across two interrelated domains: user experience and epistemologies on the one hand, and issues of data and ownership on the other. In doing so, we demonstrate the need for a deeper ethical and epistemological engagement with the value assumptions that underpin the promise of digital phenotyping for mental health.
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.
Robots are slowly, but certainly, entering people's professional and private lives. They require the attention of regulators due to the challenges they present to existing legal frameworks and the ...new legal and ethical questions they raise. This paper discusses four major regulatory dilemmas in the field of robotics: how to keep up with technological advances; how to strike a balance between stimulating innovation and the protection of fundamental rights and values; whether to affirm prevalent social norms or nudge social norms in a different direction; and, how to balance effectiveness versus legitimacy in techno-regulation. The four dilemmas are each treated in the context of a particular modality of regulation: law, market, social norms, and technology as a regulatory tool; and for each, we focus on particular topics - such as liability, privacy, and autonomy - that often feature as the major issues requiring regulatory attention. The paper then highlights the role and potential of the European framework of rights and values, responsible research and innovation, smart regulation and soft law as means of dealing with the dilemmas.
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BFBNIB, IZUM, KILJ, NUK, PILJ, PNG, PRFLJ, SAZU, UL, UM, UPUK
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.
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.
We argue what ethical implications related to the impact of eHealth on four vital aspects of primary care could (and should) be anticipated.
(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.
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.
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.
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