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.
"The United States Code is the official codification of the general and permanent laws of the United States of America. The Code was first published in 1926, and a new edition of the code has been published every six years since 1934. The 2012 edition of the Code incorporates laws enacted through the One Hundred Twelfth Congress, Second Session, the last of which was signed by the President on January 15, 2013. It does not include laws of the One Hundred Thirteenth Congress, First Session, enacted between January 2, 2013, the date it convened, and January 15, 2013. By statutory authority this edition may be cited "U.S.C. 2012 ed." As adopted in 1926, the Code established prima facie the general and permanent laws of the United States. The underlying statutes reprinted in the Code remained in effect and controlled over the Code in case of any discrepancy. In 1947, Congress began enacting individual titles of the Code into positive law. When a title is enacted into positive law, the underlying statutes are repealed and the title then becomes legal evidence of the law. Currently, 26 of the 51 titles in the Code have been so enacted. These are identified in the table of titles near the beginning of each volume. The Law Revision Counsel of the House of Representatives continues to prepare legislation pursuant to 2 U.S.C. 285b to enact the remainder of the Code, on a title-by-title basis, into positive law. The 2012 edition of the Code was prepared and published under the supervision of Ralph V. Seep, Law Revision Counsel. Grateful acknowledgment is made of the contributions by all who helped in this work, particularly the staffs of the Office of the Law Revision Counsel and the Government Printing Office"--Preface.
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.
This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.
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.
Privacy is a growing concern in the United States and around the world. The spread of the Internet and the seemingly boundaryless options for collecting, saving, sharing, and comparing information trigger consumer worries. Online practices of business and government agencies may present new ways to compromise privacy, and e-commerce and technologies that make a wide range of personal information available to anyone with a Web browser only begin to hint at the possibilities for inappropriate or unwarranted intrusion into our personal lives. Engaging Privacy and Information Technology in a Digital Age presents a comprehensive and multidisciplinary examination of privacy in the information age. It explores such important concepts as how the threats to privacy evolving, how can privacy be protected and how society can balance the interests of individuals, businesses and government in ways that promote privacy reasonably and effectively? This book seeks to raise awareness of the web of connectedness among the actions one takes and the privacy policies that are enacted, and provides a variety of tools and concepts with which debates over privacy can be more fruitfully engaged. Engaging Privacy and Information Technology in a Digital Age focuses on three major components affecting notions, perceptions, and expectations of privacy: technological change, societal shifts, and circumstantial discontinuities. This book will be of special interest to anyone interested in understanding why privacy issues are often so intractable.
Model Law on Access to Information for Africa and other regional instruments: Soft law and human rights in Africa Edited by Ololade Shyllon 2018 ISBN: 978-1-920538-87-3 Pages: 255 Print version: Available Electronic version: Free PDF available About the publication The adoption in 2013 of the Model Law on Access to Information for Africa by the African Commission on Human and Peoples’ Rights is an important landmark in the increasing elaboration of human rights-related soft law standards in Africa. Although non-binding, the Model Law significantly influenced the access to information landscape on the continent. Since the adoption of the Model Law, the Commission adopted several General Comments. The AU similarly adopted Model Laws such as the African Union Model Law on Internally Displaced Persons in Addressing Internal Displacement in Africa. This collection of essays inquires into the role and impact of soft law standards within the African human rights system and the AU generally. It assesses the extent to which these standards induced compliance, and identifies factors that contribute to generating such compliance. This book is a collection of papers presented at a conference organised by the Centre for Human Rights, University of Pretoria, with the financial support of the government of Norway, through the Royal Norwegian Embassy in Pretoria. Following the conference, the papers were reviewed and reworked. Table of Contents Acknowledgments Preface Contributors Abbreviations and acronyms PART I: THE MODEL LAW AND ITS INFLUENCE ON ACCESS TO INFORMATION IN AFRICA Introduction Ololade Shyllon The impact of the Model Law on Access to Information for Africa Fola Adeleke Implementing a Model Law on Access to Information in Africa: Lessons from the Americas Marianna Belalba and Alan Sears The implementation of the constitutional right of access to information in Africa: Opportunities and challenges Ololade Shyllon PART II: COUNTRY STUDIES The Model Law on Access to Information for Africa and the struggle for the review and passage of the Ghanaian Right to Information Bill of 2013 Ugonna Ukaigwe The impact of the Model Law on Access to Information for Africa on Kenya’s Access to Information framework Anne Nderi The Sudanese Access to Information Act 2015: A step forward? Ali Abdelrahman Ali Compliance through decoration: Access to information in Zimbabwe Nhlanhla Ngwenya PART III: INFLUENCE OF SOFT LAW WITHIN THE AFRICAN HUMAN RIGHTS SYSTEM Soft law and legitimacy in the African Union: The case of the Pretoria Principles on Ending Mass Atrocities Pursuant to Article 4(h) of the AU Constitutive Act Busingye Kabumba The incorporation of the thematic resolutions of the African Commission into the domestic laws of African countries Japhet Biegon General Comment 1 of the African Commission of the African Commission on Human and Peoples’ Rights: A source of norms and standard setting on sexual and reproductive health and rights Ebenezer Durojaye The African Union Model Law on Internally Displaced Persons: A critique Romola Adeola Selected bibliography
