Download or read book Privacy Research and Best Practices written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2016-03-24 with total page 67 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Beyond the HIPAA Privacy Rule written by Institute of Medicine and published by National Academies Press. This book was released on 2009-03-24 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Protecting Data Privacy in Health Services Research written by Institute of Medicine and published by National Academies Press. This book was released on 2001-01-13 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book G3P Good Privacy Protection Practice in Clinical Research written by Karl-Heinz Schriever and published by Walter de Gruyter GmbH & Co KG. This book was released on 2014-10-02 with total page 193 pages. Available in PDF, EPUB and Kindle. Book excerpt: Establishing ethical and privacy protection aspects in scientific research, especially in medical research, has a long history. Medical data are usually more sensible than other personal data and require therefore an even higher degree of protection than other personal data. In recent research projects genetic evaluations become more and more important and trigger thereby new and continuing activities in the context of data protection. Genetic data as a subset of medical data are the most sensible category of personal data and require therefore the highest degree of data protection. The book provides a systematic and itemized approach to data protection in clinical research including the handling of genetic material, genetic samples as well as derived genetic data and the subsequent secure storage of them. The set up of different kinds of clinical trials having in addition a genetic part, the concept of a genetic informed consent as well as collection schemes of samples are described in detail. Technical requirements and aspects of data protection including pseudonymization and anonymization procedures taking into account ethics committees requirements as well as the underlying legal framework are also presented. Without any exception, all principles and methods presented are best practices, repeatedly applied in different clinical environments and by no means theoretical considerations.
Download or read book Human Factors in Privacy Research written by Nina Gerber and published by Springer Nature. This book was released on 2023-09-17 with total page 380 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Managing and Sharing Research Data written by Louise Corti and published by SAGE. This book was released on 2014-02-04 with total page 258 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Privacy Program Management Third Edition written by Russell Densmore and published by . This book was released on 2021-12 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Data Matters written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2019-01-28 with total page 103 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Handbook on Using Administrative Data for Research and Evidence based Policy written by Shawn Cole and published by Abdul Latif Jameel Poverty Action Lab. This book was released on 2021 with total page 618 pages. Available in PDF, EPUB and Kindle. Book excerpt: This Handbook intends to inform Data Providers and researchers on how to provide privacy-protected access to, handle, and analyze administrative data, and to link them with existing resources, such as a database of data use agreements (DUA) and templates. Available publicly, the Handbook will provide guidance on data access requirements and procedures, data privacy, data security, property rights, regulations for public data use, data architecture, data use and storage, cost structure and recovery, ethics and privacy-protection, making data accessible for research, and dissemination for restricted access use. The knowledge base will serve as a resource for all researchers looking to work with administrative data and for Data Providers looking to make such data available.
Download or read book Fostering Integrity in Research written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-01-13 with total page 327 pages. Available in PDF, EPUB and Kindle. Book excerpt: The integrity of knowledge that emerges from research is based on individual and collective adherence to core values of objectivity, honesty, openness, fairness, accountability, and stewardship. Integrity in science means that the organizations in which research is conducted encourage those involved to exemplify these values in every step of the research process. Understanding the dynamics that support â€" or distort â€" practices that uphold the integrity of research by all participants ensures that the research enterprise advances knowledge. The 1992 report Responsible Science: Ensuring the Integrity of the Research Process evaluated issues related to scientific responsibility and the conduct of research. It provided a valuable service in describing and analyzing a very complicated set of issues, and has served as a crucial basis for thinking about research integrity for more than two decades. However, as experience has accumulated with various forms of research misconduct, detrimental research practices, and other forms of misconduct, as subsequent empirical research has revealed more about the nature of scientific misconduct, and because technological and social changes have altered the environment in which science is conducted, it is clear that the framework established more than two decades ago needs to be updated. Responsible Science served as a valuable benchmark to set the context for this most recent analysis and to help guide the committee's thought process. Fostering Integrity in Research identifies best practices in research and recommends practical options for discouraging and addressing research misconduct and detrimental research practices.
Download or read book OECD Health Policy Studies Health Data Governance Privacy Monitoring and Research written by OECD and published by OECD Publishing. This book was released on 2015-10-05 with total page 202 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Privacy Confidentiality and Health Research written by William W. Lowrance and published by Cambridge University Press. This book was released on 2012-06-21 with total page 203 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Dementia Research and Care Can Big Data Help written by OECD and published by OECD Publishing. This book was released on 2015-02-03 with total page 114 pages. Available in PDF, EPUB and Kindle. Book excerpt: This workshop proceedings advances international discussion of the opportunities and challenges, as well as successful strategies, for sharing and linking the massive amounts of population-based health and health care data that are routinely collected.
Download or read book Information Privacy Engineering and Privacy by Design written by William Stallings and published by Addison-Wesley Professional. This book was released on 2019-12-06 with total page 666 pages. Available in PDF, EPUB and Kindle. Book excerpt: The Comprehensive Guide to Engineering and Implementing Privacy Best Practices As systems grow more complex and cybersecurity attacks more relentless, safeguarding privacy is ever more challenging. Organizations are increasingly responding in two ways, and both are mandated by key standards such as GDPR and ISO/IEC 27701:2019. The first approach, privacy by design, aims to embed privacy throughout the design and architecture of IT systems and business practices. The second, privacy engineering, encompasses the technical capabilities and management processes needed to implement, deploy, and operate privacy features and controls in working systems. In Information Privacy Engineering and Privacy by Design, internationally renowned IT consultant and author William Stallings brings together the comprehensive knowledge privacy executives and engineers need to apply both approaches. Using the techniques he presents, IT leaders and technical professionals can systematically anticipate and respond to a wide spectrum of privacy requirements, threats, and vulnerabilities—addressing regulations, contractual commitments, organizational policies, and the expectations of their key stakeholders. • Review privacy-related essentials of information security and cryptography • Understand the concepts of privacy by design and privacy engineering • Use modern system access controls and security countermeasures to partially satisfy privacy requirements • Enforce database privacy via anonymization and de-identification • Prevent data losses and breaches • Address privacy issues related to cloud computing and IoT • Establish effective information privacy management, from governance and culture to audits and impact assessment • Respond to key privacy rules including GDPR, U.S. federal law, and the California Consumer Privacy Act This guide will be an indispensable resource for anyone with privacy responsibilities in any organization, and for all students studying the privacy aspects of cybersecurity.
Download or read book Information Security and Privacy Research written by Dimitris Gritzalis and published by Springer. This book was released on 2012-06-06 with total page 606 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book constitutes the refereed proceedings of the 27th IFIP TC 11 International Information Security Conference, SEC 2012, held in Heraklion, Crete, Greece, in June 2012. The 42 revised full papers presented together with 11 short papers were carefully reviewed and selected from 167 submissions. The papers are organized in topical sections on attacks and malicious code, security architectures, system security, access control, database security, privacy attitudes and properties, social networks and social engineering, applied cryptography, anonymity and trust, usable security, security and trust models, security economics, and authentication and delegation.
Download or read book Research Perspectives and Best Practices in Educational Technology Integration written by Keengwe, Jared and published by IGI Global. This book was released on 2013-02-28 with total page 378 pages. Available in PDF, EPUB and Kindle. Book excerpt: With advancements in technology continuing to influence all areas of society, students in current classrooms have a different understanding and perspective of learning than the educational system has been designed to teach. Research Perspectives and Best Practices in Educational Technology Integration highlights the emerging digital age, its complex transformation of the current educational system, and the integration of educational technologies into teaching strategies. This book offers best practices in the process of incorporating learning technologies into instruction and is an essential resource for academicians, professionals, educational researchers in education and educational-related fields.
Download or read book Effect of the HIPAA Privacy Rule on Health Research written by Institute of Medicine and published by National Academies Press. This book was released on 2006-10-20 with total page 102 pages. Available in PDF, EPUB and Kindle. Book excerpt: The Health Insurance Portability and Accountability Act (HIPAA) of 1996 was enacted to improve the portability and continuity of health insurance; promote medical savings accounts; improve access to long-term care services and coverage; and simplify the administration of health insurance. HIPAA's Administrative Simplification provisions focus on facilitating the electronic exchange of information for financial and administrative functions related to patient care. However, the very advances that make it easier to transmit information also present challenges to preserving the confidentiality of potentially sensitive personal information contained in medical records. In 2003, the President's Cancer Panel discovered HIPAA Privacy Rule slowed research on cancer survivors, as well as causing increased bureaucracy, informed consent problems, and complications for clinical trials. Effect of the HIPAA Privacy Rule on Health Research evaluates the impact of HIPAA provisions and provides guidance to legislators on amendments needed to make this law better serve the interests of cancer survivors and others.
