Comparing Genomic Data Sharing Policies From The National Institutes Of Health Global Alliance And Reg4all

Genomic data sharing has become increasingly important with "big data" genomics. Successful genomic data sharing requires multiple stakeholders cooperating with one another. Using discourse analysis, I compared three proposed genomic data sharing policies created by the National Institutes of Health, Reg4All and the Global Alliance for Genomics and Health. Data producers, data users, funders, participants, and end users were differently involved in the policy development process leading to policies that prioritize different needs and interests in genomic data sharing. The NIH policy satisfies the interests of data users and funders; Reg4All's policy focuses on participants, end users, and data users, and the Global Alliance policy represents a compromise leaving all stakeholders somewhat satisfied. This analysis highlights how the policy options benefit the different stakeholders and suggests ways to create a system that more evenly addresses the concerns and interests of all stakeholders, allowing for more equitable genomic data sharing.

This book shows how the vision for open access to scientific data can be more readily achieved through a staged model that research funders, policy makers, scientists, and research organizations can adopt in their practice. Drawing on her own experiences with data processing, on early findings with open scientific data at CERN (the European Organization for Nuclear Research), and from case studies of shared clinical trial data, the author updates our understanding of research data - what it is; how it dynamically evolves across different scientific disciplines and across various stages of research practice; and how it can, and indeed should, be shared at any of those stages. The result is a flexible and pragmatic path for implementing open scientific data.

This book explores international governance of the human genome from a human rights perspective and challenges paradigms of property that are entrenched in relevant international instruments.

The digital era shows an unprecedented worldwide flow of data within multinational companies and their external service providers. Binding Corporate Rules (BCRs) are designed to allow these companies to transfer personal data across borders in compliance with EU Data Protection Law. This is the first work to give an in-depth assessment of the BCR regime. It discusses the origins of the regime and the material requirements of BCR, as well as how they should be applied in practice and made binding on the companies and employees. It also covers how BCRs may provide for enforceable rights for the beneficiaries of the regime and how they should be brought in line with requirements of European rules on private international law. The work also analyses a number of significant academic debates in the areas of transnational private regulation and data protection. It reflects on the debates as to the legitimacy of transnational private regulation as a method of regulating corporate conduct and also focuses on the merits and shortcomings of BCR as a method for regulating global data transfers. This book is essential reading for those who need to understand more about the BCR regime, and require insight into how cross-border data transfers could be better protected in the future.

Written by a renowned expert on data protection law, this work examines the history, policies, and future of transborder data flow regulation, and is the only text to provide a detailed legal analysis of its global implications.