Privacy Research and Best Practices
Privacy Research and Best Practices

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2016-03-24

Total Pages: 67

ISBN-13: 0309389194

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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.

Beyond the HIPAA Privacy Rule
Beyond the HIPAA Privacy Rule

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2009-03-24

Total Pages: 334

ISBN-13: 0309124999

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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.

Protecting Data Privacy in Health Services Research
Protecting Data Privacy in Health Services Research

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2001-01-13

Total Pages: 208

ISBN-13: 0309071879

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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.

G3P - Good Privacy Protection Practice in Clinical Research
G3P - Good Privacy Protection Practice in Clinical Research

Author: Karl-Heinz Schriever

Publisher: Walter de Gruyter GmbH & Co KG

Published: 2014-10-02

Total Pages: 193

ISBN-13: 3110381591

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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.

Human Factors in Privacy Research
Human Factors in Privacy Research

Author: Nina Gerber

Publisher: Springer Nature

Published: 2023-09-17

Total Pages: 380

ISBN-13: 303128643X

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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.

Fostering Integrity in Research
Fostering Integrity in Research

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2018-01-13

Total Pages: 327

ISBN-13: 0309391253

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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.

Handbook on Using Administrative Data for Research and Evidence-based Policy
Handbook on Using Administrative Data for Research and Evidence-based Policy

Author: Shawn Cole

Publisher: Abdul Latif Jameel Poverty Action Lab

Published: 2021

Total Pages: 618

ISBN-13: 9781736021606

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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.

Privacy, Confidentiality, and Health Research
Privacy, Confidentiality, and Health Research

Author: William W. Lowrance

Publisher: Cambridge University Press

Published: 2012-06-21

Total Pages: 203

ISBN-13: 1139510827

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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.