Featuring contributions from leading scholars of health privacy law, this important volume offers insightful reflection on issues such as confidentiality, privacy, and data protection, as well as analysis in how a range of jurisdictions—including the US, the UK, Europe, South Africa, and Australia—navigate a rapidly developing biomedical environment. While the collection of personal health information offers the potential to drive research and innovation, it also generates complex legal and ethical questions in how this information is used to ensure the rights and interests of individuals and communities are respected. But in many ways laws have struggled to keep pace with technological developments. This book therefore seeks to fill a lacuna for legal insight and reflection. Over three parts, the book first explores the conceptual landscape which law and legal institutions must contend, and then turns to examine practical issues such as the GDPR, secondary use of data for research, genomic research, and data trusts. With cutting-edge analysis drawing on domestic and international case law, legislation, and policy, this comprehensive volume will prove fascinating reading for all students and researchers interested in this evolving and contentious area of study.

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.

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.

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 book provides methodologies and developments of grid technologies applied in different fields of life sciences"--Provided by publisher.

In 1997, the Council of Europe established the Convention on Human Rights and Biomedicine. It is generally regarded as an important addition to the general human rights laid down in the European Convention for the Protection of Human Rights and Fundamental Freedoms (1950), in particular with a view to the developments in modern biology and medicine. The Biomedicine Convention, which entered into force in 2000, is a framework treaty, meaning that a number of issues have to be dealt with or will be elaborated in additional Protocols; at this moment, three such Protocols have already been opened for signature. This volume of essays, written in honour of Henriette Roscam Abbing upon her retirement as Professor of Health Law at the University of Utrecht, gives an overview of some of the most important issues raised by the Convention. In six parts, this volume discusses the basic concepts and leading principles; the provision of services; the rights of patients; research; human tissue and genetics; and the implementation of the Convention.