Data Disclosure


Book Description

Data has become a key factor for the competitiveness of private and state actors alike. Personal data in particular fuels manifold corresponding data ecosystems - in many cases based on the disclosure decision of an individual. This volume presents the proceedings of the bidt "Vectors of Data Disclosure" conference held in Munich 2022. The contributions give comparative insights into the data disclosure process - combining perspectives of law, cultural studies, and business information systems. The authors thereby tackle the question in which way regulation and cultural settings shape (or do not shape) respective decisions in different parts of the world. The volume also includes interim results of the corresponding bidt research project - including in-depth reports covering the regulatory and cultural dimensions of data disclosure in eight different countries / regions worldwide, a business information systems model of the disclosure decision process, and empirical studies. The volume thereby lays the ground for interdisciplinary informed policy decisions and gives guidance to stakeholders.




Protecting Your Privacy in a Data-Driven World


Book Description

At what point does the sacrifice to our personal information outweigh the public good? If public policymakers had access to our personal and confidential data, they could make more evidence-based, data-informed decisions that could accelerate economic recovery and improve COVID-19 vaccine distribution. However, access to personal data comes at a steep privacy cost for contributors, especially underrepresented groups. Protecting Your Privacy in a Data-Driven World is a practical, nontechnical guide that explains the importance of balancing these competing needs and calls for careful consideration of how data are collected and disseminated by our government and the private sector. Not addressing these concerns can harm the same communities policymakers are trying to protect through data privacy and confidentiality legislation.




Health Data in the Information Age


Book Description

Regional health care databases are being established around the country with the goal of providing timely and useful information to policymakers, physicians, and patients. But their emergence is raising important and sometimes controversial questions about the collection, quality, and appropriate use of health care data. Based on experience with databases now in operation and in development, Health Data in the Information Age provides a clear set of guidelines and principles for exploiting the potential benefits of aggregated health dataâ€"without jeopardizing confidentiality. A panel of experts identifies characteristics of emerging health database organizations (HDOs). The committee explores how HDOs can maintain the quality of their data, what policies and practices they should adopt, how they can prepare for linkages with computer-based patient records, and how diverse groups from researchers to health care administrators might use aggregated data. Health Data in the Information Age offers frank analysis and guidelines that will be invaluable to anyone interested in the operation of health care databases.




Confidentiality, Disclosure, and Data Access


Book Description

There is a fundamental tension at the heart of every statistical agency mission. Each is charged with collecting high quality data to inform the national policy and enable statistical research. This necessitates dissemination of both summary and micro data. Each is also charged with protecting the confidentiality of survey respondents. This often necessitates the blurring of the data to reduce the probability of the re-identification of individuals. The tradeoff dilemma, which could well be stated as protecting confidentiality (avoiding disclosure) but optimizing access, has become more complex as both technological advances and public perceptions have altered in an information age. Fortunately, statistical disclosure techniques have kept pace with these changes. This volume is intended to provide a review of new state of the art techniques that directly address these issues from both a theoretical and practical perspective. It provides a review of new research in the area of confidentiality and statistical disclosure techniques. A major section of the book provides an overview of new advances in the field of both economic and demographic data in measuring disclosure risk and information loss. It also presents new information on the different approaches taken by statistical agencies in disseminating data - ranging from licensing agreements , to secure access and provides a new survey of what statistical disclosure techniques are used by statistical agencies around the world. This is complimented by a series of chapters on public perceptions of statistical agency actions, including the results of a new survey on business perceptions. The book concludes with a chapter on the challenges of technology to data protection. National Statistical Agencies, statistical practitioners, thinktanks, research organisations and universities will find this a useful tool.




Privacy Protections for Personal Information Online


Book Description

There is no comprehensive federal privacy statute that protects personal info. Instead, a patchwork of federal laws and regulations govern the collection and disclosure of personal info. and has been addressed by Congress on a sector-by-sector basis. Some contend that this is insufficient to meet the demands of today¿s technology. Contents of this report: (1) Background; (2) Federal Legal Framework for the Privacy of Online Personal Info.: Constitutional Protections; Statutory Protections; (3) The Federal Trade Comm. (FTC): FTC Enforcement Actions Concerning the Privacy of Personal Info.; (4) Recent Policy Initiatives; (5) Electronic Communications Privacy Act Reform. This is a print on demand report.




Improving Access to and Confidentiality of Research Data


Book Description

Improving Access to and Confidentiality of Research Data summarizes a workshop convened by the Committee on National Statistics (CNSTAT) to promote discussion about methods for advancing the often conflicting goals of exploiting the research potential of microdata and maintaining acceptable levels of confidentiality. This report outlines essential themes of the access versus confidentiality debate that emerged during the workshop. Among these themes are the tradeoffs and tensions between the needs of researchers and other data users on the one hand and confidentiality requirements on the other; the relative advantages and costs of data perturbation techniques (applied to facilitate public release) versus restricted access as tools for improving security; and the need to quantify disclosure risksâ€"both absolute and relativeâ€"created by researchers and research data, as well as by other data users and other types of data.




Overview of the Privacy Act of 1974


Book Description

The "Overview of the Privacy Act of 1974," prepared by the Department of Justice's Office of Privacy and Civil Liberties (OPCL), is a discussion of the Privacy Act's disclosure prohibition, its access and amendment provisions, and its agency recordkeeping requirements. Tracking the provisions of the Act itself, the Overview provides reference to, and legal analysis of, court decisions interpreting the Act's provisions.




Sharing Clinical Trial Data


Book Description

Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research-from funders, to researchers, to journals, to physicians, and ultimately, to patients.




Statistical Confidentiality


Book Description

Because statistical confidentiality embraces the responsibility for both protecting data and ensuring its beneficial use for statistical purposes, those working with personal and proprietary data can benefit from the principles and practices this book presents. Researchers can understand why an agency holding statistical data does not respond well to the demand, “Just give me the data; I’m only going to do good things with it.” Statisticians can incorporate the requirements of statistical confidentiality into their methodologies for data collection and analysis. Data stewards, caught between those eager for data and those who worry about confidentiality, can use the tools of statistical confidentiality toward satisfying both groups. The eight chapters lay out the dilemma of data stewardship organizations (such as statistical agencies) in resolving the tension between protecting data from snoopers while providing data to legitimate users, explain disclosure risk and explore the types of attack that a data snooper might mount, present the methods of disclosure risk assessment, give techniques for statistical disclosure limitation of both tabular data and microdata, identify measures of the impact of disclosure limitation on data utility, provide restricted access methods as administrative procedures for disclosure control, and finally explore the future of statistical confidentiality.




Data Privacy: Foundations, New Developments and the Big Data Challenge


Book Description

This book offers a broad, cohesive overview of the field of data privacy. It discusses, from a technological perspective, the problems and solutions of the three main communities working on data privacy: statistical disclosure control (those with a statistical background), privacy-preserving data mining (those working with data bases and data mining), and privacy-enhancing technologies (those involved in communications and security) communities. Presenting different approaches, the book describes alternative privacy models and disclosure risk measures as well as data protection procedures for respondent, holder and user privacy. It also discusses specific data privacy problems and solutions for readers who need to deal with big data.