政治自由主义 = Political liberalism

Informed Consent. Legal Theory and Clinical Practice

Lepping’s view that rights under the European Convention on Human Rights were not ‘implemented’ in Britain until the Human Rights Act 1998 is incomplete ( Psychiatric Bulletin , 2003, 27 , 285-289). The UK has been a signatory to the ECHR since its outset in 1951. Since 1966, it has granted

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European Convention on Human Rights

A number of important principles in effective risk communication established in the late 20th century can provide important scientific insight into patient response to the risks posed by COVID-19 [1-3]. Early risk communication scholars studied public perceptions of risk in response to environmental disasters, or infectious disease outbreaks. They found acceptability of risk, and any limitations and acceptability of response by experts was shaped by two key components: hazard and outrage. The number of people who are exposed, infected and fall ill can be considered the hazard. How the public and patients perceive the risk and respond to messages regarding risk mitigation relates to outrage. Social and cultural factors, immediacy, uncertainty, familiarity, personal control, scientific uncertainty and trust in institutions and media all shape acceptability of response. These outrage factors influence the ever-changing public understanding of COVID-19 risk, as well as the public's acceptance of personal and societal mitigation strategies. Risk perceptions and acceptability of mitigation strategies are also largely shaped in the context of culture and society. In concert, hazard and outrage along with cultural and economic context shape adherence to, and overall acceptance of, personal mitigation strategies including wearing facemasks, and social distancing among the general public. The spread of misinformation on social media in the context of crisis communication provides both challenges and opportunities for experts and officials to effectively communicate and influence these outrage factors. Social media offers an opportunity for experts to quickly convey true information about hazards, but offers others the opportunity to counter this with the spread of misinformation and exacerbate outrage. We propose strategies for infectious diseases clinicians to apply risk communication principles and frameworks to improve patient care and public message development in response to COVID-19.

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Crisis Communication and Public Perception of COVID-19 Risk in the Era of Social Media.

Data collection and processing via digital public health technologies are being promoted worldwide by governments and private companies as strategic remedies for mitigating the COVID-19 pandemic and loosening lockdown measures. However, the ethical and legal boundaries of deploying digital tools for disease surveillance and control purposes are unclear, and a rapidly evolving debate has emerged globally around the promises and risks of mobilising digital tools for public health. To help scientists and policy makers to navigate technological and ethical uncertainty, we present a typology of the primary digital public health applications that are in use. These include proximity and contact tracing, symptom monitoring, quarantine control, and flow modelling. For each, we discuss context-specific risks, cross-sectional issues, and ethical concerns. Finally, recognising the need for practical guidance, we propose a navigation aid for policy makers and other decision makers for the ethical development and use of digital public health tools.

Digital tools against COVID-19: taxonomy, ethical challenges, and navigation aid

Communication by public authorities during a crisis situation is an essential and indispensable part of any response to a situation that may threaten both life and property In the online connected world possibilities for such communication have grown further, in particular with the opportunity that social media presents As a consequence, communication strategies have become a key plank of responses to crises ranging from epidemics to terrorism to natural disaster Such strategies involve a range of innovative practices on social media Whilst being able to bring about positive effects, they can also bring about a range of harmful unintended side effects This include economic harms produced by incorrect information and a range of social harms that can be fuelled by myths and rumours, worsening negative phenomena such as stigmatisation and discrimination Given the potential for such harms, one might expect that affected or potentially affected individuals would be able to challenge such measures before courts or administrative tribunals As this paper demonstrates however this is not the case More often than not seemingly applicable legal approaches are unlikely to be able to engage such methods This is often because such measures represent activities that are purely expressive in nature and therefore not capable of imposing any binding legal or corporeal changes on individuals Whilst some forms of soft law may pose requirements for public officials involved in such activities (eg codes of conduct or of professional ethics), they are not likely to offer potentially harmed individuals the chance to to challenge particular communication strategies before courts or legal tribunals The result is that public authorities largely have a free reign to communicate how they wish and do not have to have to comply with a range of requirements (eg relating to form and substantive) content) that would in general apply to most forms of official administrative act

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Crisis Communication in Public Health Emergencies: The Limits of 'Legal Control' and the Risks for Harmful Outcomes in a Digital Age.

Big genetic data and its big data protection challenges

In this article, the role of consent is discussed in the framework of fundamental rights and in the context of mobile health technologies (mHealth), such as smart phones, mobile phones or tablet/palm-held computing devices to provide healthcare. The authors surmise how, in practice, although there will be more emphasis on informed consent formally, there will be less space for genuine individual consent. This betrays a focus more on the letter of consent rules in data protection than their spirit. This risks reducing consent to a tick box operation in a manner analogous to consumer transactions, something manifestly unsuitable for consent, even if only in informational terms, during medical procedures.

mHealth and data protection – the letter and the spirit of consent legal requirements

The EU commission's risky choice for a non-risk based strategy on assessment of medical devices

Personal health data is essential to many forms of scientific research. Such data may come from a large variety of sources including electronic health records (EHRs), datasets used for previous research and from data linked to biobanks. European data protection law recognises that in addition to using consent as a legal basis for the processing of personal health data for scientific research, such data may be used without consent where it is in the ‘public interest’. Despite the existence of such a legal option, ethics bodies in a number of states have shown reticence to utilise it, often pushing researchers into either obtaining consent or anonymising the data in question. Whilst the latter option may be appealing from a legal point of view, if carried out properly, the result may be that the research value of the data is reduced or even destroyed.

Paul Quinn

Papers

Crisis Communication in Public Health Emergencies: The Limits of 'Legal Control' and the Risks for Harmful Outcomes in a Digital Age.

Big genetic data and its big data protection challenges

mHealth and data protection – the letter and the spirit of consent legal requirements

The EU commission's risky choice for a non-risk based strategy on assessment of medical devices

The Anonymisation of Research Data — A Pyric Victory for Privacy that Should Not Be Pushed Too Hard by the eu Data Protection Framework?