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      Can a virus undermine human rights?

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      The Lancet. Public Health
      The Author(s). Published by Elsevier Ltd.

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          Abstract

          Exceptional situations require exceptional measures. Faced with the magnitude of the health risks caused by the coronavirus disease 2019 (COVID-19) pandemic, national governments have had to quickly decide whether or not to declare a state of emergency to curb the spread of the disease. Where a health threat constitutes a danger for the whole population, then the suspension of ordinary law is legitimate to increase the government's capacity to protect society. A state of necessity justifies the state of emergency. This state provides a legal framework for the limitation of individual freedom during a short period of time, such as the freedom of movement, freedom of assembly, and entrepreneurial freedom. This state enables governments to requisition goods and services, to shut down public or private facilities, and to take binding measures that would normally be seen as infringements of basic rights. Health security becomes a matter of public security. Exceptional situations require exceptional means. Faced with an imminent threat, governments do not hesitate to use the latest mass surveillance technologies. 1 China is making use of drones, facial recognition cameras, and Quick Response code technology to monitor the whereabouts of its citizens. South Korea, Singapore, and Israel are extracting Global Positioning System data from mobile phone networks, credit card information, and video images to monitor the outbreak. These countries exercise an intrusive biopolitics where everybody can be watched, screened, and monitored in their every movement. Although such observation from a distance is effective in containing COVID-19, there is little knowledge on how these data will be stored over the long term and how tempting it will be for governments to maintain increased amounts of surveillance in the aftermath of the pandemic. Can exceptionality jeopardise some democratic principles in the long term? Could the epidemic lead to a reduction of individual rights after the peak of the crisis? The first risk is that some exceptional measures adopted in the context of an emergency might eventually fall within the scope of ordinary legislation, if leaders argue that a widespread health threat could resurface at any time. In the USA, the Patriot Act has infringed on civil liberties in the long run by allowing security agencies to spy on every American without due process. In France, after the 2015 Paris terrorist attacks, an anti-terrorism law reduced civil liberties by curtailing judicial oversight of security tools. Many intellectuals argue that such normalisation of emergency measures has become a trend in democracies. 2 The second risk is that governments might take advantage of the substantial effect of this crisis to administer a so-called shock strategy, aimed at strengthening surveillance politics. As Naomi Klein has pointed out, this strategy consists of a government seizing the opportunity of a national trauma—eg, a war, a terrorist attack, a natural disaster—to make radical reforms that would have been considered unacceptable beforehand. 3 Many governments could take advantage of tracking technologies, artificial intelligence, and robotics to expand invasive surveillance. 4 Governments will most likely seek to watch over the intimate life of the public, to predict and monitor their behaviours and movements. These practices could morph into the panoptic surveillance of the lives of citizens. 5 The third risk is that fear could change the value citizens accord to freedom. As global biological and environmental threats increase, citizens might be disposed to give up some of their constitutional rights. The aspiration to security can quickly erode the desire for freedom. This aspiration can lead to individuals preferring the authority of a leader to the ethics of democratic discussion. Citizens might even call for the soft security of smart technologies and algorithmic governance. 6 In health, tracking technologies are effective in improving health research, anticipating health threats, and mitigating individual at-risk behaviors. 7 This effectiveness is why governments will be tempted to bring mass surveillance into ordinary laws. The evolution is underway: many national health regulators, research centres, and health-care providers around the world already make use of personal data. 8 On one hand, health tracking systems are valued for their exceptional benefits in terms of disease prevention, therapeutic follow-ups of patients, and epidemiological monitoring. On the other hand, no one can ignore the risk that the bulk collection of data can transform the surveillance of health issues into the surveillance of individuals, with a whole range of possible information on lifestyles, personal choices, and territorial, social, and minority affiliations. In authoritarian countries, such a situation can lead to the stigmatisation of social minorities. There is no reason to consider liberal democracies immune to this risk. 9 Is there any reason to remain optimistic? Major crises that cause societal shocks can ultimately provoke positive ways of reconsidering the common good and fundamental rights. The participation of women in the war effort between 1914 and 1918, for example, led to the extension of the right to vote to women in many countries. The end of World War 2 provided an opportunity for European countries to rethink the social contract around inclusive health protection systems. All things considered, it is the appropriate time now, as humanity is facing the crisis, to start thinking about the post-COVID-19 reconstruction. In this debate, fundamental rights should not be sidestepped, especially in countries with weak privacy and data protection policies. How can humans think about health crisis management systems that protect society without undermining individual freedom? National legislatures should adopt adequate rules to ensure that health surveillance and monitoring policies will be strictly prescribed by law, proportionate to public health necessities, done in a transparent manner, controlled by independent regulation authorities, subject to constant ethical reflection, non-discriminatory, and respectful of fundamental rights.

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          The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

          Background A critical problem for patients with chronic conditions who see multiple health care providers is incomplete or inaccurate information, which can contribute to lack of care coordination, low quality of care, and medical errors. Objective As part of a larger project on applications of consumer health information technology (HIT) and barriers to its use, we conducted a semistructured interview study with patients with multiple chronic conditions (MCC) with the objective of exploring their role in managing their personal health information. Methods Semistructured interviews were conducted with patients and providers. Patients were eligible if they had multiple chronic conditions and were in regular care with one of two medical organizations in New York City; health care providers were eligible if they had experience caring for patients with multiple chronic conditions. Analysis was conducted from a grounded theory perspective, and recruitment was concluded when saturation was achieved. Results A total of 22 patients and 7 providers were interviewed; patients had an average of 3.5 (SD 1.5) chronic conditions and reported having regular relationships with an average of 5 providers. Four major themes arose: (1) Responsibility for managing medical information: some patients perceived information management and sharing as the responsibility of health care providers; others—particularly those who had had bad experiences in the past—took primary responsibility for information sharing; (2) What information should be shared: although privacy concerns did influence some patients’ perceptions of sharing of medical data, decisions about what to share were also heavily influenced by their understanding of health and disease and by the degree to which they understood the health care system; (3) Methods and tools varied: those patients who did take an active role in managing their records used a variety of electronic tools, paper tools, and memory; and (4) Information management as invisible work: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment. Conclusions We conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC.
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            Indiscriminate mass surveillance and the public sphere

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              Health as the Moral Principle of Post-Genomic Society: Data-Driven Arguments Against Privacy and Autonomy.

              In Finland, as well as all over the globe, great weight is put on the possibilities of large data collections and 'big data' for generating economic growth, enhancing medical research, and boosting health and wellbeing in totally new ways. This massive data gathering and usage is justified by the moral principle of improving health. The imperative of health thus legitimizes data collection, new infrastructures and innovation policy. It is also supported by the rhetoric of health promotion. New arrangements in health research and innovations in the health sector are justified, as they produce health, while the moral principle of health also obligates individual persons to pursue healthy lifestyles and become healthy citizens. I examine how, in this context of Finnish data-driven medicine, arguments related to privacy and autonomy become silenced when contrasted with the moral principle of health.
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                Author and article information

                Contributors
                Journal
                Lancet Public Health
                Lancet Public Health
                The Lancet. Public Health
                The Author(s). Published by Elsevier Ltd.
                2468-2667
                21 April 2020
                21 April 2020
                Affiliations
                [a ]University of Paris 1 Pantheon-Sorbonne, Paris 75005, France
                Article
                S2468-2667(20)30092-X
                10.1016/S2468-2667(20)30092-X
                7170793
                32325013
                4ca75386-3a19-43c1-b47d-1f54ed693550
                © 2020 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license

                Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.

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