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.
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.
As nations race to hone contact-tracing efforts, the world's experts consider strategies for maximum transparency and impact. As public health professionals around the world work tirelessly to respond to the COVID-19 pandemic, it is clear that traditional methods of contact tracing need to be augmented in order to help address a public health crisis of unprecedented scope. Innovators worldwide are racing to develop and implement novel public-facing technology solutions, including digital contact tracing technology. These technological products may aid public health surveillance and containment strategies for this pandemic and become part of the larger toolbox for future infectious outbreak prevention and control. As technology evolves in an effort to meet our current moment, Johns Hopkins Project on Ethics and Governance of Digital Contact Tracing Technologies—a rapid research and expert consensus group effort led by Dr. Jeffrey P. Kahn of the Johns Hopkins Berman Institute of Bioethics in collaboration with the university's Center for Health Security—carried out an in-depth analysis of the technology and the issues it raises. Drawing on this analysis, they produced a report that includes detailed recommendations for technology companies, policymakers, institutions, employers, and the public. The project brings together perspectives from bioethics, health security, public health, technology development, engineering, public policy, and law to wrestle with the complex interactions of the many facets of the technology and its applications. This team of experts from Johns Hopkins University and other world-renowned institutions has crafted clear and detailed guidelines to help manage the creation, implementation, and application of digital contact tracing. Digital Contact Tracing for Pandemic Response is the essential resource for this fast-moving crisis. Contributors: Joseph Ali, JD; Anne Barnhill, PhD; Anita Cicero, JD; Katelyn Esmonde, PhD; Amelia Hood, MA; Brian Hutler, Phd, JD; Jeffrey P. Kahn, PhD, MPH; Alan Regenberg, MBE; Crystal Watson, DrPH, MPH; Matthew Watson; Robert Califf, MD, MACC; Ruth Faden, PhD, MPH; Divya Hosangadi, MSPH; Nancy Kass, ScD; Alain Labrique, PhD, MHS, MS; Deven McGraw, JD, MPH, LLM; Michelle Mello, JD, PhD; Michael Parker, BEd (Hons), MA, PhD; Stephen Ruckman, JD, MSc, MAR; Lainie Rutkow, JD, MPH, PhD; Josh Sharfstein, MD; Jeremy Sugarman, MD, MPH, MA; Eric Toner, MD; Mar Trotochaud, MSPH; Effy Vayena, PhD; Tal Zarsky, JSD, LLM, LLB
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 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.
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.
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.
Public health guidelines and policies relating to digital public health are essential to ensuring the protection of the population. With this protection, there needs to be a consideration for the ethical challenges in public health. There is an obligation of care that comes with accessing health services, as well as a need for understanding the role of Artificial Intelligence and Machine Learning. As health challenges become more complex, there is a growing need to identify and address questions on existing public health policies, codes of conduct, and guidelines relating to the provision of medical care across the globe, in order to strengthen our understanding of the ethics of public health practices.
The present text is the revised/updated version of the CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects. It consists of 21 guidelines with commentaries. A prefatory section outlines the historical background and the revision process and includes an introduction an account of earlier instruments and guidelines a statement of ethical principles and a preamble. An Appendix lists the items to be included in the research protocol to be submitted for scientific and ethical review and clearance. The Guidelines relate mainly to ethical justification and scientific validity of research; ethical review; informed consent; vulnerability - of individuals groups communities and populations; women as research subjects; equity regarding burdens and benefits; choice of control in clinical trials; confidentiality; compensation for injury; strengthening of national or local capacity for ethical review; and obligations of sponsors to provide health-care services. They are designed to be of use to countries in defining national policies on the ethics of biomedical research involving human subjects applying ethical standards in local circumstances and establishing or improving ethical review mechanisms. A particular aim is to reflect the conditions and the needs of low-resource countries and the implications for multinational or transnational research in which they may be partners.
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.
