The Challenge Of Data Sharing

As platforms for sharing, re-using and storing data, research data repositories are integral to open science policy. This book provides a comprehensive approach to these data repositories, their functionalities, uses, issues and prospects. Taking France as an example, the current landscape of data repositories is considered, including discussion of the idea of a national repository and a comparative study of several national systems. The international re3data directory is outlined and a collection of six case studies of model repositories, both public and private, are detailed (CDS, Data INRAE, SEANOE, Nakala, Figshare and Data Mendeley). Research Data Sharing and Valorization also includes appendices containing a number of websites and reference texts from the French Ministry of Higher Education, Research and Innovation, and the CNRS. To the authors’ knowledge, it is the first book to be entirely devoted to these new platforms and is aimed at researchers, teachers, students and professionals working with scientific and technical data and information.

Anne Dreller shows that data sharing offers great opportunities and huge value creation potential for the business world. Despite many opportunities that data sharing promises, the business world has not fully operationalized this fact yet, due to various existing challenges. Thus, an exemplary, future-oriented, and platform-based data sharing business model is developed for the startup Quemey. This business model is also equipped with prioritized implementation advice, including measures like focusing on strong values for all platform participants, growing their business into a powerful monopolist position, and eliminating barriers of technological, contractual and legal or data privacy uncertainties.

On November 18 and 19, 2019, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop in Washington, DC, titled Sharing Clinical Trial Data: Challenges and a Way Forward. The workshop followed the release of the 2015 Institute of Medicine (IOM) consensus study report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk, and was designed to examine the current state of clinical trial data sharing and reuse and to consider ways in which policy, technology, incentives, and governance could be leveraged to further encourage and enhance data sharing. This publication summarizes the presentations and discussions from the workshop.

The proliferation of open banking and open finance regimes across the globe demonstrates an ever-increasing interest of policymakers in empowering customers to take control of their data through innovative data sharing frameworks. These frameworks mostly operate within a single (e.g., financial services) sector but are poised to extend to other parts of the economy in the future – and eventually apply economy-wide. This book articulates the concept of economy-wide customer data sharing (CDS) frameworks, analyses in detail the main challenges associated with the development of such frameworks and is informed by the lessons learned from Australia’s world-first cross-sectoral Consumer Data Right regime. It develops a first comprehensive taxonomy of CDS frameworks and offers valuable insights on crucial issues of customer trust, information security, consumer protection and participant regulation. This study, apart from its scholarly importance, has clear practical value. It formulates twelve lessons that will assist governmental officials and other policymakers engaged in establishing and revising data sharing frameworks across the globe. It is essential reading for anyone interested or involved in the law and policy related to the sharing of a most precious resource in the modern economy – customer data.

Responsible Genomic Data Sharing: Challenges and Approaches brings together international experts in genomics research, bioinformatics and digital security who analyze common challenges in genomic data sharing, privacy preserving technologies, and best practices for large-scale genomic data sharing. Practical case studies, including the Global Alliance for Genomics and Health, the Beacon Network, and the Matchmaker Exchange, are discussed in-depth, illuminating pathways forward for new genomic data sharing efforts across research and clinical practice, industry and academia. Addresses privacy preserving technologies and how they can be applied to enable responsible genomic data sharing Employs illustrative case studies and analyzes emerging genomic data sharing efforts, common challenges and lessons learned Features chapter contributions from international experts in responsible approaches to genomic data sharing