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On February 26, 2020, the Board on Health Sciences Policy of the National Academies of Sciences, Engineering, and Medicine hosted a 1-day public workshop in Washington, DC, to examine current and emerging bioethical issues that might arise in the context of biomedical research and to consider research topics in bioethics that could benefit from further attention. The scope of bioethical issues in research is broad, but this workshop focused on issues related to the development and use of digital technologies, artificial intelligence, and machine learning in research and clinical practice; issues emerging as nontraditional approaches to health research become more widespread; the role of bioethics in addressing racial and structural inequalities in health; and enhancing the capacity and diversity of the bioethics workforce. This publication summarizes the presentations and discussions from the workshop.
This Open Access book highlights the ethical issues and dilemmas that arise in the practice of public health. It is also a tool to support instruction, debate, and dialogue regarding public health ethics. Although the practice of public health has always included consideration of ethical issues, the field of public health ethics as a discipline is a relatively new and emerging area. There are few practical training resources for public health practitioners, especially resources which include discussion of realistic cases which are likely to arise in the practice of public health. This work discusses these issues on a case to case basis and helps create awareness and understanding of the ethics of public health care. The main audience for the casebook is public health practitioners, including front-line workers, field epidemiology trainers and trainees, managers, planners, and decision makers who have an interest in learning about how to integrate ethical analysis into their day to day public health practice. The casebook is also useful to schools of public health and public health students as well as to academic ethicists who can use the book to teach public health ethics and distinguish it from clinical and research ethics.
Natural disasters and cholera outbreaks. Ebola, SARS, and concerns over pandemic flu. HIV and AIDS. E. coli outbreaks from contaminated produce and fast foods. Threats of bioterrorism. Contamination of compounded drugs. Vaccination refusals and outbreaks of preventable diseases. These are just some of the headlines from the last 30-plus years highlighting the essential roles and responsibilities of public health, all of which come with ethical issues and the responsibilities they create. Public health has achieved extraordinary successes. And yet these successes also bring with them ethical tension. Not all public health successes are equally distributed in the population; extraordinary health disparities between rich and poor still exist. The most successful public health programs sometimes rely on policies that, while improving public health conditions, also limit individual rights. Public health practitioners and policymakers face these and other questions of ethics routinely in their work, and they must navigate their sometimes competing responsibilities to the health of the public with other important societal values such as privacy, autonomy, and prevailing cultural norms. This Oxford Handbook provides a sweeping and comprehensive review of the current state of public health ethics, addressing these and numerous other questions. Taking account of the wide range of topics under the umbrella of public health and the ethical issues raised by them, this volume is organized into fifteen sections. It begins with two sections that discuss the conceptual foundations, ethical tensions, and ethical frameworks of and for public health and how public health does its work. The thirteen sections that follow examine the application of public health ethics considerations and approaches across a broad range of public health topics. While chapters are organized into topical sections, each chapter is designed to serve as a standalone contribution. The book includes 73 chapters covering many topics from varying perspectives, a recognition of the diversity of the issues that define public health ethics in the U.S. and globally. This Handbook is an authoritative and indispensable guide to the state of public health ethics today.
Privacy is one of the most urgent issues associated with information technology and digital media. This book claims that what people really care about when they complain and protest that privacy has been violated is not the act of sharing information itself—most people understand that this is crucial to social life —but the inappropriate, improper sharing of information. Arguing that privacy concerns should not be limited solely to concern about control over personal information, Helen Nissenbaum counters that information ought to be distributed and protected according to norms governing distinct social contexts—whether it be workplace, health care, schools, or among family and friends. She warns that basic distinctions between public and private, informing many current privacy policies, in fact obscure more than they clarify. In truth, contemporary information systems should alarm us only when they function without regard for social norms and values, and thereby weaken the fabric of social life.
Leading scholars in bioethics and public health ethics clarify the key values and norms of emergency planning and response and address ethical issues relating to the allocation of scarce resources, research in the context of emergencies, community participation in preparedness planning, the protection of those with special needs, and the duties public health professionals.
This book brings together international experts from a wide variety of disciplines, in order to understand the impact that digital technologies have had on our well-being as well as our understanding of what it means to live a life that is good for us. The multidisciplinary perspective that this collection offers demonstrates the breadth and importance of these discussions, and represents a pivotal and state-of-the-art contribution to the ongoing discussion concerning digital well-being. Furthermore, this is the first book that captures the complex set of issues that are implicated by the ongoing development of digital technologies, impacting our well-being either directly or indirectly. By helping to clarify some of the most pertinent issues, this collection clarifies the risks and opportunities associated with deploying digital technologies in various social domains. Chapter 2 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.
Participatory Health through Social Media explores how traditional models of healthcare can be delivered differently through social media and online games, and how these technologies are changing the relationship between patients and healthcare professionals, as well as their impact on health behavior change. The book also examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection. Also looks into the opportunities and risks to record and analyze epidemiologically relevant data retrieved from the Internet, social media, sensor data, and other digital sources. The book encompasses topics such as patient empowerment, gamification and social games, and the relationships between social media, health behavior change, and health communication crisis during epidemics. Additionally, the book analyzes the possibilities of big data generated through social media. Authored by IMIA Social Media working group, this book is a valuable resource for healthcare researchers and professionals, as well as clinicians interested in using new media as part of their practice or research. - Presents a multidisciplinary point of view providing the readers with a broader perspective - Brings the latest case studies and technological advances in the area, supported by an active international community of members who actively work in this area - Endorsed by IMIA Social Media workgroup, guaranteeing trustable information from the most relevant experts on the subject - Examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection
As advances in disruptive technologies transform politics and increase the velocity of information and policy flows worldwide, the public is being confronted with changes that move faster than they can comprehend. There is an urgent need to analyze and communicate the ethical issues of these advancements. In a perpetually updating digital world, data is becoming the dominant basis for reality. This new world demands a new approach because traditional methods are not fit for a non-physical space like the internet. Applied Ethics in a Digital World provides an analysis of the ethical questions raised by modern science, technological advancements, and the fourth industrial revolution and explores how to harness the speed, accuracy, and power of emerging technologies in policy research and public engagement to help leaders, policymakers, and the public understand the impact that these technologies will have on economies, legal and political systems, and the way of life. Covering topics such as artificial intelligence (AI) ethics, digital equity, and translational ethics, this book is a dynamic resource for policymakers, civil society, CEOs, ethicists, technologists, security advisors, sociologists, cyber behavior specialists, criminologists, data scientists, global governments, students, researchers, professors, academicians, and professionals.
This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.
The increasingly widespread implementation and use of intelligent assistive technologies (IATs) is reshaping dementia care. This volume provides an up-to-date overview of the current state of IATs for dementia care. The new essays collected here examine what IATs will mean for clinical practice and the ethical and regulatory challenges they will pose.