Pandemic Disease, Public Health, and Ethics

2019 ◽  
pp. 796-811 ◽  
Author(s):  
Maxwell Smith ◽  
Ross Upshur
Keyword(s):  
Public Health ◽  
Ethical Issues ◽  
Ethical Challenges ◽  
Pandemic Preparedness ◽  
Scarce Resources ◽  
Ethical Frameworks ◽  
Health Measures ◽  
Care Workers ◽  
The Face ◽  
Conducting Research

Infectious disease pandemics raise significant and novel ethical challenges to the organization and practice of public health. This chapter provides an overview of the salient ethical issues involved in preparing for and responding to pandemic disease, including those arising from deploying restrictive public health measures to contain and curb the spread of disease (e.g., isolation and quarantine), setting priorities for the allocation of scarce resources, health care workers’ duty to care in the face of heightened risk of infection, conducting research during pandemics, and the global governance of preventing and responding to pandemic disease. It also outlines ethical guidance from prominent ethical frameworks that have been developed to address these ethical issues and concludes by discussing some pressing challenges that must be addressed if ethical reflection is to make a meaningful difference in pandemic preparedness and response.

The Ethics of AI in Biomedical Research, Patient Care, and Public Health

2020 ◽  
pp. 702-718 ◽  
Author(s):  
Alessandro Blasimme ◽  
Effy Vayena
Keyword(s):  
Public Health ◽  
Patient Care ◽  
Biomedical Research ◽  
Disease Surveillance ◽  
Ethical Issues ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Healthcare Provision ◽  
Social Scientists ◽  
Ethical Frameworks

This chapter explores ethical issues raised by the use of artificial intelligence (AI) in the domain of biomedical research, healthcare provision, and public health. The litany of ethical challenges that AI in medicine raises cannot be addressed sufficiently by current regulatory and ethical frameworks. The chapter then advances the systemic oversight approach as a governance blueprint, which is based on six principles offering guidance as to the desirable features of oversight structures and processes in the domain of data-intense biomedicine: adaptivity, flexibility, inclusiveness, reflexivity, responsiveness, and monitoring (AFIRRM). In the research domain, ethical review committees will have to incorporate reflexive assessment of the scientific and social merits of AI-driven research and, as a consequence, will have to open their ranks to new professional figures such as social scientists. In the domain of patient care, clinical validation is a crucial issue. Hospitals could equip themselves with “clinical AI oversight bodies” charged with the task of advising clinical administrators. Meanwhile, in the public health sphere, the new level of granularity enabled by AI in disease surveillance or health promotion will have to be negotiated at the level of targeted communities.

scholarly journals Ethical challenges in pathogen sequencing: a systematic scoping review

2020 ◽  
Vol 5 ◽  
pp. 119
Author(s):  
Stephanie Johnson ◽  
Michael Parker
Keyword(s):  
Public Health ◽  
Ethical Issues ◽  
Sequence Data ◽  
Public Health Practice ◽  
Empirical Work ◽  
Outbreak Investigation ◽  
Ethical Challenges ◽  
Public And Private ◽  
Ethical Frameworks ◽  
Sequencing Technologies

Background: Going forward, the routine implementation of genomic surveillance activities and outbreak investigation is to be expected. We sought to systematically identify the emerging ethical challenges; and to systematically assess the gaps in ethical frameworks or thinking and identify where further work is needed to solve practical challenges. Methods: We systematically searched indexed academic literature from PubMed, Google Scholar, and Web of Science from 2000 to April 2019 for peer-reviewed articles that substantively engaged in discussion of ethical issues in the use of pathogen genome sequencing technologies for diagnostic, surveillance and outbreak investigation. Results: 28 articles were identified; nine United States, five United Kingdom, five The Netherlands, three Canada, two Switzerland, one Australia, two South Africa, and one Italy. Eight articles were specifically about the use of sequencing in HIV. Eleven were not specific to a particular disease. Results were organized into four themes: tensions between public and private interests; difficulties with translation from research to clinical and public health practice; the importance of community trust and support; equity and global partnerships; and the importance of context. Conclusion: While pathogen sequencing has the potential to be transformative for public health, there are a number of key ethical issues that must be addressed, particularly around the conditions of use for pathogen sequence data. Ethical standards should be informed by public values, and further empirical work investigating stakeholders’ views are required. Development in the field should also be under-pinned by a strong commitment to values of justice, in particular global health equity.

Dilemmas of nudging in public health: an ethical analysis of a Danish pamphlet

2020 ◽  
Author(s):  
Jacob Busch ◽  
Emilie Kirstine Madsen ◽  
Antoinette Mary Fage-Butler ◽  
Marianne Kjær ◽  
Loni Ledderer
Keyword(s):  
Public Health ◽  
Ethical Issues ◽  
Screening Programme ◽  
Screening Program ◽  
Ethical Analysis ◽  
Choice Making ◽  
The Face ◽  
Information Materials ◽  
The Individual ◽  
To Receive

Summary Nudging has been discussed in the context of public health, and ethical issues raised by nudging in public health contexts have been highlighted. In this article, we first identify types of nudging approaches and techniques that have been used in screening programmes, and ethical issues that have been associated with nudging: paternalism, limited autonomy and manipulation. We then identify nudging techniques used in a pamphlet developed for the Danish National Screening Program for Colorectal Cancer. These include framing, default nudge, use of hassle bias, authority nudge and priming. The pamphlet and the very offering of a screening programme can in themselves be considered nudges. Whether nudging strategies are ethically problematic depend on whether they are categorized as educative- or non-educative nudges. Educative nudges seek to affect people’s choice making by engaging their reflective capabilities. Non-educative nudges work by circumventing people’s reflective capabilities. Information materials are, on the face of it, meant to engage citizens’ reflective capacities. Recipients are likely to receive information materials with this expectation, and thus not expect to be affected in other ways. Non-educative nudges may therefore be particularly problematic in the context of information on screening, also as participating in screening does not always benefit the individual.

The ethics of pandemic preparedness revisited - autonomy, quarantine, transferability and trust

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
P Schröder-Bäck ◽  
T Schloemer ◽  
K Martakis ◽  
C Brall
Keyword(s):  
Crisis Management ◽  
Ethical Issues ◽  
Lessons Learned ◽  
Point Of View ◽  
Ethical Challenges ◽  
Pandemic Preparedness ◽  
Ethical Aspects ◽  
Outbreak Management ◽  
Ethics Framework ◽  
Ethical Point

Abstract Background The outbreak of SARS in 2002 lead to a public health ethics discourse. The crisis management of that time was ethically analysed and lessons to be learned discussed. Scholarship and WHO, among others, developed an ethics of pandemic preparedness. The current “corona crisis” also faces us with ethical challenges. This presentation is comparing the two crises from an ethical point of view and a focus on Europe. Methods An ethics framework for pandemic preparedness (Schröder et al. 2006 and Schröder-Bäck 2014) is used to make a synopsis of ethical issues. Ethical aspects of 2002 and 2020 that were discussed in the literature and in the media are compared. For 2020, the focus is on interventions in Italy, Germany, Switzerland, and the Netherlands. Results Topics that emerged from the 2002 crisis were, among others, revolving around aspects of stigmatisation and fair distribution of scarce resources (esp. vaccines, antivirals). Currently, most urgent and ethically challenging aspects relate to social distancing vs. autonomy: Isolation and quarantine are handled differently across Europe and the EU. Questions of transferability of such interventions prevail. Contexts vary vertically over time (2002 vs. 2020) and horizontally (e.g. between Italy and Germany at the same time). Furthermore, trust in authorities, media and health information is a key issue. Conclusions Ethical aspects are key for good pandemic preparedness and management. The context of the crises between 2002 and 2020 has slightly changed, also based on “lessons learned” from 2002. This has implications on ethical issues that are being discussed. New lessons will have to be learned from the 2020 crisis. Key messages Pandemic preparedness and outbreak management entail many ethical tensions that need to be addressed. Currently, questions of trust and transferability are key to the crisis management, further ethical issues could still emerge.

Challenge to International Agencies

1975 ◽  
Vol 5 (3) ◽  
pp. 489-497 ◽  
Author(s):  
Carl E. Taylor
Keyword(s):  
Growth And Development ◽  
Ethical Issues ◽  
International Health ◽  
Social Consequences ◽  
Scarce Resources ◽  
International Agencies ◽  
Health Measures ◽  
Transfer Of Technology ◽  
Health Agencies ◽  
Role Shift

International health agencies face major changes requiring basic adjustments in approaches and values. The ethical issues include moral criteria for allocating scarce resources, relation of health to population growth and development, iatrogenic social consequences of health measures, and inappropriate transfer of technology. A proposed new style of international health work is summarized in five principles and ten guidelines. The principles are: development from below; a role shift from adviser collaborator; sequential research, demonstration, and implementation; concentration on problems of motivation; and partnership in approaches to mutually shared complex problems.

Ethics and equity in rare disease research and healthcare

2021 ◽  
Author(s):  
Maria Koromina ◽  
Vasileios Fanaras ◽  
Gareth Baynam ◽  
Christina Mitropoulou ◽  
George P Patrinos
Keyword(s):  
Rare Diseases ◽  
Ethical Issues ◽  
Genetic Diseases ◽  
Ethical Framework ◽  
Middle Income ◽  
Next Generation Sequencing Technology ◽  
Ethical Frameworks ◽  
Rare Genetic Diseases ◽  
Conducting Research ◽  
Key Aspects

Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing. Moreover, we focus on addressing ethical issues surrounding research in low- and middle-income countries. Overall, this perspective aims to address key aspects and issues for building proper ethical frameworks, when conducting research involving genomics data with a particular emphasis on rare diseases and genetics testing.

scholarly journals Understanding the impact of the COVID-19 outbreak on vulnerable populations in Malaysia through an ethical lens: A study of non-state actors involved in aid distribution

2022 ◽  
Vol 6 ◽  
pp. 263
Author(s):  
Melati Nungsari ◽  
Chuah Hui Yin ◽  
Nicole Fong ◽  
Veena Pillai
Keyword(s):  
Vulnerable Populations ◽  
Ethical Issues ◽  
High Morbidity ◽  
Ethical Challenges ◽  
Institutional Reforms ◽  
Ethical Practices ◽  
Scarce Resources ◽  
Containment Measures ◽  
Vulnerable Households ◽  
The Impact

Background: Globally, vulnerable populations have been disproportionately affected by the COVID-19 pandemic and subsequent responses, such as lockdown measures and mass vaccinations. Numerous ethical challenges have arisen at different levels, be it at the policy-making level or on the ground. For example, policymakers have to contain a highly contagious disease with high morbidity using scarce resources, while minimizing the medium- to long-term social and economic impacts induced by containment measures. This study explores the impact of COVID-19 on vulnerable populations in Malaysia by using an intersectional framework that accounts for overlapping forms of marginalization.   Methods: This study utilizes in-depth qualitative data obtained from 34 individuals and organizations to understand the impact of the COVID-19 outbreak on vulnerable populations in Malaysia. We utilize four principles of ethics to guide our coding and interpretation of the data – namely beneficence, non-maleficence, justice and autonomy. We utilize a frequency analysis to roughly understand the types of ethical issues that emerged. Using hermeneutic content analysis (HCA), we then explore how the principles interact with each other. Results: Through the frequently analysis, we found that although beneficence was very prevalent in our dataset, so was a significant amount of harm – as perpetuated through injustice, the removal or lack of autonomy and maleficence. We also unearthed a worrying landscape of harm and deep systemic issues associated with a lack of support for vulnerable households – further exacerbated during the pandemic. Conclusions: Policy recommendations for aid organizations and society to mitigate these ethical problems are presented, such as long overdue institutional reforms and stronger ethical practices rooted in human rights principles, which government agencies and aid providers can then use in the provision of aid to vulnerable populations.

scholarly journals A New Era of Epidemiology: Digital Epidemiology for Investigating the COVID-19 Outbreak in China

10.2196/21685 ◽  
2020 ◽  
Vol 22 (9) ◽  
pp. e21685
Author(s):  
Zonglin He ◽  
Casper J P Zhang ◽  
Jian Huang ◽  
Jingyan Zhai ◽  
Shuang Zhou ◽  
...  
Keyword(s):  
Public Health ◽  
Information And Communication Technologies ◽  
Ethical Issues ◽  
Rapid Development ◽  
Disease Outbreaks ◽  
Face Mask ◽  
Digital Data ◽  
Disease Spread ◽  
Health Measures ◽  
Digital Epidemiology

A novel pneumonia-like coronavirus disease (COVID-19) caused by a novel coronavirus named SARS-CoV-2 has swept across China and the world. Public health measures that were effective in previous infection outbreaks (eg, wearing a face mask, quarantining) were implemented in this outbreak. Available multidimensional social network data that take advantage of the recent rapid development of information and communication technologies allow for an exploration of disease spread and control via a modernized epidemiological approach. By using spatiotemporal data and real-time information, we can provide more accurate estimates of disease spread patterns related to human activities and enable more efficient responses to the outbreak. Two real cases during the COVID-19 outbreak demonstrated the application of emerging technologies and digital data in monitoring human movements related to disease spread. Although the ethical issues related to using digital epidemiology are still under debate, the cases reported in this article may enable the identification of more effective public health measures, as well as future applications of such digitally directed epidemiological approaches in controlling infectious disease outbreaks, which offer an alternative and modern outlook on addressing the long-standing challenges in population health.

TRADITIONAL SAFETY MEASURES AND ACCIDENTAL POISONING IN CHILDHOOD

PEDIATRICS ◽  
1969 ◽  
Vol 44 (5) ◽  
pp. 811-816
Author(s):  
Raymond Sobel
Keyword(s):  
Public Health ◽  
Objective Evaluation ◽  
Accidental Poisoning ◽  
Systematic Research ◽  
Safety Education ◽  
Driver Education ◽  
Accidental Injury ◽  
Health Measures ◽  
Vested Interests ◽  
The Face

Although few drugs, surgical technique, and public health measures are put into widespread use today without rigorous testing and evaluation, such assessment of efficacy is the exceplion rather than the rule with countermeasures against accidental injury. Many countermeasures now in use have never been evaluated; others continue in use long after they have been proved to be ineffective. Driver education, for example, is being widely adopted in the face of mounting evidence that it does nothing to prevent accidents. Programs of "home safety education" continue to be formulated despite considerable evidence that they do not produce the intended results. This unconcern for—if not downright resistance to—systematic research on effectiveness has several consequences: (1) It permits programs of questionable value to absorb funds and manpower that might better be used in developing effective programs. (2) It precludes the possibility of a cost-effectiveness approach, which promises to be at least as useful in injury control as it has been in other areas of social concern. (3) It develops and strengthens vested interests connected with established programs—and thus it increases the resistance against objective evaluation. (4) It lulls the lay public into a false sense of security, since the public is likely to assume that accident countermeasures have the same degree of validity as other public health measures. The signal contribution of the paper that follows lies in its challenge of a "safety measure" that has long been accepted and disseminated by professionals and laymen alike. Although the population studied is both small and in some respects atypical, the findings are strong enough to warrant further study of larger and different populations. The methodology employed is also worth emulating. Recognizing the bias inherent in medical records and the difficulty of obtaining valid and representative responses to mail questionnaires, the investigator resorted to both interviewing and observation, which, though unquestionably expensive, are probably the most effective methods of data collection available to the research worker studying accidental injury.

scholarly journals THE INTERSECTION OF ETHICS AND VULNERABLE ELDERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S238-S238
Author(s):  
Pamela B Teaster ◽  
Georgia Anetzberger
Keyword(s):  
Older Adults ◽  
Social Services ◽  
Ethical Issues ◽  
Elder Abuse ◽  
Cognitive Status ◽  
Ethical Challenges ◽  
Community Based ◽  
Conducting Research ◽  
Definition Of ◽  
Community Based Services

Abstract Researchers, practitioners and policymakers are daily confronted with multiple and competing situations regarding vulnerable older adults and the complex issues that they face in all aspects of their lives. Challenges can arise in the provision of social services, dispensing justice, conducting research, or addressing legal issues. The purpose of this symposium is to discuss dilemmas that vulnerable older adults and concerned others face by elucidating current and future challenges facing this population, particularly in the realms of compromised health (cognitive impairment); effective status (gender); care arrangements (home and community-based services); and abuse, neglect, and exploitation. Teaster and Anetzberger discuss relevant ethical theories and principles as well as a definition of vulnerability. Santos and Nichols-Hadeed report on ethical issues embedded in vulnerable elders’ cognitive status. Bowland and Halaas highlight the intersection of ethics, gender and vulnerable elders. Niles-Yokum and Beaumaster discuss the nexus of ethics and the provision of home and community based services for vulnerable older adults. Heisler considers vulnerabilities of older adults and ethical challenges when addressing elder abuse. Throughout the papers, we weave the ethical principles of autonomy, beneficence, nonmaleficence, and justice.

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