Beyond the HIPAA Privacy Rule


Book Description

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.




Unpopular Privacy


Book Description

Can the government stick us with privacy we don't want? It can, it does, and according to Anita L. Allen, it may need to do more of it. Privacy is a foundational good, Allen argues, a necessary tool in the liberty-lover's kit for a successful life. A nation committed to personal freedom must be prepared to mandate privacy protections for its people, whether they eagerly embrace them or not. This unique book draws attention to privacies of seclusion, concealment, confidentiality and data-protection undervalued by their intended beneficiaries and targets--and outlines the best reasons for imposing them. Allen looks at laws designed to keep website operators from collecting personal information, laws that force strippers to wear thongs, and the myriad employee and professional confidentiality rules--including insider trading laws--that require strict silence about matters whose disclosure could earn us small fortunes. She shows that such laws recognize the extraordinary importance of dignity, trust and reputation, helping to preserve social, economic and political options throughout a lifetime.




The Fight for Privacy: Protecting Dignity, Identity, and Love in the Digital Age


Book Description

The essential road map for understanding—and defending—your right to privacy in the twenty-first century. Privacy is disappearing. From our sex lives to our workout routines, the details of our lives once relegated to pen and paper have joined the slipstream of new technology. As a MacArthur fellow and distinguished professor of law at the University of Virginia, acclaimed civil rights advocate Danielle Citron has spent decades working with lawmakers and stakeholders across the globe to protect what she calls intimate privacy—encompassing our bodies, health, gender, and relationships. When intimate privacy becomes data, corporations know exactly when to flash that ad for a new drug or pregnancy test. Social and political forces know how to manipulate what you think and who you trust, leveraging sensitive secrets and deepfake videos to ruin or silence opponents. And as new technologies invite new violations, people have power over one another like never before, from revenge porn to blackmail, attaching life-altering risks to growing up, dating online, or falling in love. A masterful new look at privacy in the twenty-first century, The Fight for Privacy takes the focus off Silicon Valley moguls to investigate the price we pay as technology migrates deeper into every aspect of our lives: entering our bedrooms and our bathrooms and our midnight texts; our relationships with friends, family, lovers, and kids; and even our relationship with ourselves. Drawing on in-depth interviews with victims, activists, and advocates, Citron brings this headline issue home for readers by weaving together visceral stories about the countless ways that corporate and individual violators exploit privacy loopholes. Exploring why the law has struggled to keep up, she reveals how our current system leaves victims—particularly women, LGBTQ+ people, and marginalized groups—shamed and powerless while perpetrators profit, warping cultural norms around the world. Yet there is a solution to our toxic relationship with technology and privacy: fighting for intimate privacy as a civil right. Collectively, Citron argues, citizens, lawmakers, and corporations have the power to create a new reality where privacy is valued and people are protected as they embrace what technology offers. Introducing readers to the trailblazing work of advocates today, Citron urges readers to join the fight. Your intimate life shouldn’t be traded for profit or wielded against you for power: it belongs to you. With Citron as our guide, we can take back control of our data and build a better future for the next, ever more digital, generation.




The Right to Privacy


Book Description

Reproduction of the original: The Right to Privacy by Samuel D. Warren, Louis D. Brandeis




Protecting Data Privacy in Health Services Research


Book Description

The need for quality improvement and for cost saving are driving both individual choices and health system dynamics. The health services research that we need to support informed choices depends on access to data, but at the same time, individual privacy and patient-health care provider confidentiality must be protected.




Innovations in Federal Statistics


Book Description

Federal government statistics provide critical information to the country and serve a key role in a democracy. For decades, sample surveys with instruments carefully designed for particular data needs have been one of the primary methods for collecting data for federal statistics. However, the costs of conducting such surveys have been increasing while response rates have been declining, and many surveys are not able to fulfill growing demands for more timely information and for more detailed information at state and local levels. Innovations in Federal Statistics examines the opportunities and risks of using government administrative and private sector data sources to foster a paradigm shift in federal statistical programs that would combine diverse data sources in a secure manner to enhance federal statistics. This first publication of a two-part series discusses the challenges faced by the federal statistical system and the foundational elements needed for a new paradigm.




Controlling Knowledge


Book Description

Digital communications technology has immeasurably enhanced our capacity to store, retrieve, and exchange information. But who controls our access to information, and who decides what others have a right to know about us? In Controlling Knowledge, author Lorna Stefanick offers a thought-provoking and eminently user-friendly overview of current legislation governing freedom of information and the protection of privacy. Aiming to clarify rather than mystify, Stefanick outlines the history and application of FOIP legislation, with special focus on how these laws affect the individual. To illustrate the impact of FOIP, she examines the notion of informed consent, looks at concerns about surveillance in the digital age, and explores the sometimes insidious influence of Facebook. Specialists in public policy and public administration, information technology, communications, law, criminal justice, sociology, and health care will find much here that bears directly on their work, while students and general readers will welcome the book's down-to-earth language and accessible style. Intended to serve as a "citizen's guide," Controlling Knowledge is a vital resource for anyone seeking to understand how freedom of information and privacy protection are legally defined and how this legislation is shaping our individual rights as citizens of the information age.




Privacy in the Age of Big Data


Book Description

Digital devices have made our busy lives a little easier and they do great things for us, too – we get just-in-time coupons, directions, and connection with loved ones while stuck on an airplane runway. Yet, these devices, though we love them, can invade our privacy in ways we are not even aware of. The digital devices send and collect data about us whenever we use them, but that data is not always safeguarded the way we assume it should be to protect our privacy. Privacy is complex and personal. Many of us do not know the full extent to which data is collected, stored, aggregated, and used. As recent revelations indicate, we are subject to a level of data collection and surveillance never before imaginable. While some of these methods may, in fact, protect us and provide us with information and services we deem to be helpful and desired, others can turn out to be insidious and over-arching. Privacy in the Age of Big Data highlights the many positive outcomes of digital surveillance and data collection while also outlining those forms of data collection to which we do not always consent, and of which we are likely unaware, as well as the dangers inherent in such surveillance and tracking. Payton and Claypoole skillfully introduce readers to the many ways we are “watched” and how to change behaviors and activities to recapture and regain more of our privacy. The authors suggest remedies from tools, to behavior changes, to speaking out to politicians to request their privacy back. Anyone who uses digital devices for any reason will want to read this book for its clear and no-nonsense approach to the world of big data and what it means for all of us.




The Need for Privacy Protections


Book Description




APEC Privacy Framework


Book Description