Privacy Research and Best Practices


Book Description

Recent disclosures about the bulk collection of domestic phone call records and other signals intelligence programs have stimulated widespread debate about the implications of such practices for the civil liberties and privacy of Americans. In the wake of these disclosures, many have identified a need for the intelligence community to engage more deeply with outside privacy experts and stakeholders. At the request of the Office of the Director of National Intelligence, the National Academies of Sciences, Engineering, and Medicine convened a workshop to address the privacy implications of emerging technologies, public and individual preferences and attitudes toward privacy, and ethical approaches to data collection and use. This report summarizes discussions between experts from academia and the private sector and from the intelligence community on private sector best practices and privacy research results.




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.




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.




Federal Statistics, Multiple Data Sources, and Privacy Protection


Book Description

The environment for obtaining information and providing statistical data for policy makers and the public has changed significantly in the past decade, raising questions about the fundamental survey paradigm that underlies federal statistics. New data sources provide opportunities to develop a new paradigm that can improve timeliness, geographic or subpopulation detail, and statistical efficiency. It also has the potential to reduce the costs of producing federal statistics. The panel's first report described federal statistical agencies' current paradigm, which relies heavily on sample surveys for producing national statistics, and challenges agencies are facing; the legal frameworks and mechanisms for protecting the privacy and confidentiality of statistical data and for providing researchers access to data, and challenges to those frameworks and mechanisms; and statistical agencies access to alternative sources of data. The panel recommended a new approach for federal statistical programs that would combine diverse data sources from government and private sector sources and the creation of a new entity that would provide the foundational elements needed for this new approach, including legal authority to access data and protect privacy. This second of the panel's two reports builds on the analysis, conclusions, and recommendations in the first one. This report assesses alternative methods for implementing a new approach that would combine diverse data sources from government and private sector sources, including describing statistical models for combining data from multiple sources; examining statistical and computer science approaches that foster privacy protections; evaluating frameworks for assessing the quality and utility of alternative data sources; and various models for implementing the recommended new entity. Together, the two reports offer ideas and recommendations to help federal statistical agencies examine and evaluate data from alternative sources and then combine them as appropriate to provide the country with more timely, actionable, and useful information for policy makers, businesses, and individuals.




Managing and Sharing Research Data


Book Description

Research funders in the UK, USA and across Europe are implementing data management and sharing policies to maximize openness of data, transparency and accountability of the research they support. Written by experts from the UK Data Archive with over 20 years experience, this book gives post-graduate students, researchers and research support staff the data management skills required in today’s changing research environment. The book features guidance on: how to plan your research using a data management checklist how to format and organize data how to store and transfer data research ethics and privacy in data sharing and intellectual property rights data strategies for collaborative research how to publish and cite data how to make use of other people’s research data, illustrated with six real-life case studies of data use.




Human Factors in Privacy Research


Book Description

This book covers topics needed to be considered in research around usable privacy. The book starts from a psychological perspective and introduces readers to basic behavioral theories and models that can explain end-user privacy behavior (including the “privacy paradox”) on a theoretical level. Subsequently, an introduction to different study methods (e.g., experiment, survey, interviews, co-creation) used in usable privacy research is given. Based on this, different methodological aspects, such as identifying appropriate questionnaires, and applying User-Centered Design, will be discussed. Finally, the book describes application areas for privacy research such as dark patterns and presents solutions for privacy protection, e.g., regarding consent-giving and PETs. The book aims to bring together the different research approaches to the topic of usable privacy, which often originate from computer science, psychology, and law, and provide a methodologically sound basis for researchers who want to delve deeper into this topic. This is an open access book.




Data Matters


Book Description

In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.




OECD Health Policy Studies Health Data Governance Privacy, Monitoring and Research


Book Description

This report identifies eight key data governance mechanisms to maximise benefits to patients and to societies from the collection, linkage and analysis of health data, and to minimise risks to both patient privacy and the security of health data.




Privacy, Confidentiality, and Health Research


Book Description

The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.




E-Commerce Security and Privacy


Book Description

Welcome to the second volume of the Kluwer International Series on ADVANCES IN INFORMATION SECURITY. The goals of this series are, one, to establish the state of the art of and set the course for future research in information security and, two, to serve as a central reference and timely topics in information security research source for advanced and development. The scope of this series includes all aspects of com puter and network security and related areas such as fault tolerance and software assurance. ADVANCES IN INFORMATION SECURITY aims to publish thor ough and cohesive overviews of specific topics in information security, as well as works that are larger in scope or that contain more detailed background information than can be accommodated in shorter survey articles. The series also serves as a forum for topics that may not have reached a level of maturity to warrant a comprehensive textbook treat ment. The success of this series depends on contributions by researchers and developers such as yourself. If you have an idea for a book that is appro priate for this series, I encourage you to contact either the Acquisitions Editor for the series, Lance Wobus ([email protected]), or myself, the Consulting Editor for the series ([email protected]). We would be happy about to discuss any potential projects with you. Additional information this series can be obtained from www.wkap.nljseries.htmjADIS.