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When data from all aspects of our lives can be relevant to our health - from our habits at the grocery store and our Google searches to our FitBit data and our medical records - can we really differentiate between big data and health big data? Will health big data be used for good, such as to improve drug safety, or ill, as in insurance discrimination? Will it disrupt health care (and the health care system) as we know it? Will it be possible to protect our health privacy? What barriers will there be to collecting and utilizing health big data? What role should law play, and what ethical concerns may arise? This timely, groundbreaking volume explores these questions and more from a variety of perspectives, examining how law promotes or discourages the use of big data in the health care sphere, and also what we can learn from other sectors.
This book provides interdisciplinary analysis of electronic health record systems and medical big data, offering a wealth of technical, legal, and policy insights.
This book presents cutting edge research on the new ethical challenges posed by biomedical Big Data technologies and practices. ‘Biomedical Big Data’ refers to the analysis of aggregated, very large datasets to improve medical knowledge and clinical care. The book describes the ethical problems posed by aggregation of biomedical datasets and re-use/re-purposing of data, in areas such as privacy, consent, professionalism, power relationships, and ethical governance of Big Data platforms. Approaches and methods are discussed that can be used to address these problems to achieve the appropriate balance between the social goods of biomedical Big Data research and the safety and privacy of individuals. Seventeen original contributions analyse the ethical, social and related policy implications of the analysis and curation of biomedical Big Data, written by leading experts in the areas of biomedical research, medical and technology ethics, privacy, governance and data protection. The book advances our understanding of the ethical conundrums posed by biomedical Big Data, and shows how practitioners and policy-makers can address these issues going forward.
As our nation enters a new era of medical science that offers the real prospect of personalized health care, we will be confronted by an increasingly complex array of health care options and decisions. The Learning Healthcare System considers how health care is structured to develop and to apply evidence-from health profession training and infrastructure development to advances in research methodology, patient engagement, payment schemes, and measurement-and highlights opportunities for the creation of a sustainable learning health care system that gets the right care to people when they need it and then captures the results for improvement. This book will be of primary interest to hospital and insurance industry administrators, health care providers, those who train and educate health workers, researchers, and policymakers. The Learning Healthcare System is the first in a series that will focus on issues important to improving the development and application of evidence in health care decision making. The Roundtable on Evidence-Based Medicine serves as a neutral venue for cooperative work among key stakeholders on several dimensions: to help transform the availability and use of the best evidence for the collaborative health care choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and, ultimately, to ensure innovation, quality, safety, and value in health care.
Transparency is a concept that is becoming increasingly lauded as a solution to a host of problems in the American health care system. Transparency initiatives show great promise, including empowering patients and other stakeholders to make more efficient decisions, improve resource allocation, and better regulate the health care industry. Nevertheless, transparency is not a cure-all for the problems facing the modern health care system. The authors of this volume present a nuanced view of transparency, exploring ways in which transparency has succeeded and ways in which transparency initiatives have room for improvement. Working at the intersection of law, medicine, ethics, and business, the book goes beyond the buzzwords to the heart of transparency's transformative potential, while interrogating its obstacles and downsides. It should be read by anyone looking for a better understanding of transparency in the health care context.
When data from all aspects of our lives can be relevant to our health - from our habits at the grocery store and our Google searches to our FitBit data and our medical records - can we really differentiate between big data and health big data? Will health big data be used for good, such as to improve drug safety, or ill, as in insurance discrimination? Will it disrupt health care (and the health care system) as we know it? Will it be possible to protect our health privacy? What barriers will there be to collecting and utilizing health big data? What role should law play, and what ethical concerns may arise? This timely, groundbreaking volume explores these questions and more from a variety of perspectives, examining how law promotes or discourages the use of big data in the health care sphere, and also what we can learn from other sectors.
In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.
Genomic and Precision Medicine: Oncology, Third Edition focuses on the applications of genome discovery as research points to personalized cancer therapies. Each chapter is organized to cover the application of genomics and personalized medicine tools and technologies to a) Risk Assessment and Susceptibility, b) Diagnosis and Prognosis, c) Pharmacogenomics and Precision Therapeutics, and d) Emerging and Future Opportunities in the field. - Provides a comprehensive volume written and edited by oncology genomic specialists for oncology health providers - Includes succinct commentary and key learning points that will assist providers with their local needs for implementation of genomic and personalized medicine into practice - Presents an up-to-date overview on major opportunities for genomic and personalized medicine in practice - Covers case studies that highlight the practical use of genomics in the management of patients
This volume tackles a quickly-evolving field of inquiry, mapping the existing discourse as part of a general attempt to place current developments in historical context; at the same time, breaking new ground in taking on novel subjects and pursuing fresh approaches. The term "A.I." is used to refer to a broad range of phenomena, from machine learning and data mining to artificial general intelligence. The recent advent of more sophisticated AI systems, which function with partial or full autonomy and are capable of tasks which require learning and 'intelligence', presents difficult ethical questions, and has drawn concerns from many quarters about individual and societal welfare, democratic decision-making, moral agency, and the prevention of harm. This work ranges from explorations of normative constraints on specific applications of machine learning algorithms today-in everyday medical practice, for instance-to reflections on the (potential) status of AI as a form of consciousness with attendant rights and duties and, more generally still, on the conceptual terms and frameworks necessarily to understand tasks requiring intelligence, whether "human" or "A.I."
“Sometimes ideas change the world. This astonishing, miraculous, shattering, inspiring book captures the origins and the arc of the movement for sex equality. It’s a book whose time has come—always, but perhaps now more than ever.” —Cass Sunstein, coauthor of Nudge Under certain conditions, small simple actions can produce large and complex “butterfly effects.” Butterfly Politics shows how Catharine A. MacKinnon turned discrimination law into an effective tool against sexual abuse—grounding and predicting the worldwide #MeToo movement—and proposes concrete steps that could have further butterfly effects on women’s rights. Thirty years after she won the U.S. Supreme Court case establishing sexual harassment as illegal, this timely collection of her previously unpublished interventions on consent, rape, and the politics of gender equality captures in action the creative and transformative activism of an icon. “MacKinnon adapts a concept from chaos theory in which the tiny motion of a butterfly’s wings can trigger a tornado half a world away. Under the right conditions, she posits, small actions can produce major social transformations.” —New York Times “MacKinnon [is] radical, passionate, incorruptible and a beautiful literary stylist... Butterfly Politics is a devastating salvo fired in the gender wars... This book has a single overriding aim: to effect global change in the pursuit of equality.” —The Australian “Sexual Harassment of Working Women was a revelation. It showed how this anti-discrimination law—Title VII—could be used as a tool... It was the beginning of a field that didn’t exist until then.” —U.S. Supreme Court Justice Ruth Bader Ginsburg