Emerging ethical issues regarding digital health data on the world medical association draft declaration on ethical considerations regarding health databases and biobanks

This is the final version of the article. Available from the publisher via the DOI in this record.All authors are affiliated with the Data and IT in Health and Medicine Lab which is coordinated at the Department of Social Science, Health & Medicine, King’s College London (datahealthmedicine.wordpress.com). This article builds upon a response submitted by the Lab to the World Medical Association consultation on the draft Declaration on Ethical Considerations regarding Health Databases and Biobanks in June 2015. DOI: 10.13140/RG.2.1.3334.4163. Barbara Prainsack is a member of the Navigating Knowledge Landscapes (NKL) network led by Anna Lydia Svalastog (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4576744/)

COVID-19 contact tracing apps: UK public perceptions

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

SERIES:eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice

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

Digital orphans: Data closure and openness in patient- powered networks

This is the author accepted manuscript. The final version is available from Palgrave Macmillan via the DOI in this record.In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data that patient users share are not used to research scientific issues or the patient voice. This is not a trivial issue, as participation in these networks is linked to openness in data sharing, which would benefits fellow patients and contributes to the public good more generally. Patient-powered research networks are often framed as disrupting research agendas and the industry. However, when data that patients share are not accessible for research, their epistemic potential is denied. The problem is linked to the business models of the organisations managing these networks: models centred on controlling patient data tend to close networks with regard to data use. The constraint on research is at odds with the ideals of a sharing, open and supportive epistemic community that networks’ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the ‘digital orphans’ of Internet research. By pointing out the issue of data use, this paper informs the discussion about the capacity of patient-powered networks to support research participation and the patient voice.We are indebted to the anonymous reviewers and the editor, who with their supportive and constructive comments helped us to better clarify and highlight the argument of the article. We would like to also thank friends and colleagues who have offered valuable comments and suggestions on early drafts of this paper. We would like to especially thank Barbara Prainsack, Sabina Leonelli, Alena Buyx, and David Teira. This research is funded by the European Research Council (ERC) under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ERC grant agreement number 335925, and the German Federal Ministry of Education and Research (grant number 01GP1311

A survey of clinical features of allergic rhinitis in adults

Background: Allergic rhinitis (AR) has high prevalence and substantial socio-economic burden. Material/Methods: The study included 35 Italian Centers recruiting an overall number of 3383 adult patients with rhinitis (48% males, 52% females, mean age 29.1, range 18\u201345 years). For each patient, the attending physician had to fill in a standardized questionnaire, covering, in particular, some issues such as the ARIA classification of allergic rhinitis (AR), the results of skin prick test (SPT), the kind of treatment, the response to treatment, and the satisfaction with treatment. Results: Out of the 3383 patients with rhinitis, 2788 (82.4%) had AR: 311 (11.5%) had a mild intermittent, 229 (8.8%) a mild persistent, 636 (23.5%) a moderate-severe intermittent, and 1518 (56.1%) a moderate-severe persistent form. The most frequently used drugs were oral antihistamines (77.1%) and topical corticosteroids (60.8%). The response to treatment was judged as excellent in 12.2%, good in 41.3%, fair in 31.2%, poor in 14.5%, and very bad in 0.8% of subjects. The rate of treatment dissatisfaction was significantly higher in patients with moderate-to-severe AR than in patients with mild AR (p<0.0001). Indication to allergen immunotherapy (AIT) was significantly more frequent (p<0.01) in patients with severe AR than with mild AR. . Conclusions: These fndings confirm the appropriateness of ARIA guidelines in classifying the AR patients and the association of severe symptoms with unsuccessful drug treatment. The optimal targeting of patients to be treated with AIT needs to be reassessed

Big data, big waste? A reflection on the environmental sustainability of big data initiatives

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

Big data, big waste? A reflection on the environmental sustainability of big data initiatives

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