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.

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.

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.

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.

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.

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.

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.