Understanding the legal implications of data sharing, access and reuse in the Australian research landscape

Researchers are increasingly involved in data-intensive research projects that cut across geographic and disciplinary borders. Quality research now often involves virtual communities of researchers participating in large-scale web-based collaborations, opening their earlystage research to the research community in order to encourage broader participation and accelerate discoveries. The result of such large-scale collaborations has been the production of ever-increasing amounts of data. In short, we are in the midst of a data deluge. Accompanying these developments has been a growing recognition that if the benefits of enhanced access to research are to be realised, it will be necessary to develop the systems and services that enable data to be managed and secured. It has also become apparent that to achieve seamless access to data it is necessary not only to adopt appropriate technical standards, practices and architecture, but also to develop legal frameworks that facilitate access to and use of research data. This chapter provides an overview of the current research landscape in Australia as it relates to the collection, management and sharing of research data. The chapter then explains the Australian legal regimes relevant to data, including copyright, patent, privacy, confidentiality and contract law. Finally, this chapter proposes the infrastructure elements that are required for the proper management of legal interests, ownership rights and rights to access and use data collected or generated by research projects.

Researcher attitudes to data sharing : cultural change requires better motivations

While undertaking the ANDS RDA Gold Standard Record Exemplars project, research data sharing was discussed with many QUT researchers. Our experiences provided rich insight into researcher attitudes towards their data and the sharing of such data. Generally, we found traditional altruistic motivations for research data sharing did not inspire researchers, but an explanation of the more achievement-oriented benefits were more compelling.

Japonica rice: Intellectual property, scientific publishing and data-sharing

This article examines a series of controversies within the life sciences over data sharing. Part 1 focuses upon the agricultural biotechnology firm Syngenta publishing data on the rice genome in the journal Science, and considers proposals to reform scientific publishing and funding to encourage data sharing. Part 2 examines the relationship between intellectual property rights and scientific publishing, in particular copyright protection of databases, and evaluates the declaration of the Human Genome Organisation that genomic databases should be global public goods. Part 3 looks at varying opinions on the information function of patent law, and then considers the proposals of Patrinos and Drell to provide incentives for private corporations to release data into the public domain.

Preliminary results from the Caribbean Acoustic Tracking Network (CATn): a data sharing partnership for acoustic tracking and movement ecology of marine animals in the Caribbean Sea

We have recently exchanged and integrated into a single database tag detections for conch, teleost and elasmobranch fish from four separately maintained arrays in the U.S. Virgin Islands including the NMFS queen conch array (St. John nearshore), NOAA’s Biogeography Branch array (St. John nearshore & midshelf reef); UVI shelf edge arrays (Marine Conservation District, Grammanik & other shelf edge); NOAA NMFS Apex Predator array COASTSPAN (St. John nearshore). The integrated database has over 7.5 million hits. Data is shared only with consent of partners and full acknowledgements. Thus, the summary of integrated data here uses data from NOAA and UVI arrays under a cooperative agreement. The benefits of combining and sharing data have included increasing the total area of detection resulting in an understanding of broader scale connectivity than would have been possible with a single array. Partnering has also been cost-effectiveness through sharing of field work, staff time and equipment and exchanges of knowledge and experience across the network. Use of multiple arrays has also helped in optimizing the design of arrays when additional receivers are deployed. The combined arrays have made the USVI network one of the most extensive acoustic arrays in the world with a total of 150+ receivers available, although not necessarily all deployed at all times. Currently, two UVI graduate student projects are using acoustic array data.

Novel information sharing syntax for data sharing between police and community partners, using role-based security.

The exchange of information between the police and community partners forms a central aspect of effective community service provision. In the context of policing, a robust and timely communications mechanism is required between police agencies and community partner domains, including: Primary healthcare (such as a Family Physician or a General Practitioner); Secondary healthcare (such as hospitals); Social Services; Education; and Fire and Rescue services. Investigations into high-profile cases such as the Victoria Climbié murder in 2000, the murders of Holly Wells and Jessica Chapman in 2002, and, more recently, the death of baby Peter Connelly through child abuse in 2007, highlight the requirement for a robust information-sharing framework. This paper presents a novel syntax that supports information-sharing requests, within strict data-sharing policy definitions. Such requests may form the basis for any information-sharing agreement that can exist between the police and their community partners. It defines a role-based architecture, with partner domains, with a syntax for the effective and efficient information sharing, using SPoC (Single Point-of-Contact) agents to control in-formation exchange. The application of policy definitions using rules within these SPoCs is inspired by network firewall rules and thus define information exchange permissions. These rules can be imple-mented by software filtering agents that act as information gateways between partner domains. Roles are exposed from each domain to give the rights to exchange information as defined within the policy definition. This work involves collaboration with the Scottish Police, as part of the Scottish Institute for Policing Research (SIPR), and aims to improve the safety of individuals by reducing risks to the community using enhanced information-sharing mechanisms.

Research data management and openness: the role of data sharing in developing institutional policies and practices

Purpose: To investigate the relationship between research data management (RDM) and data sharing in the formulation of RDM policies and development of practices in higher education institutions (HEIs). Design/methodology/approach: Two strands of work were undertaken sequentially: firstly, content analysis of 37 RDM policies from UK HEIs; secondly, two detailed case studies of institutions with different approaches to RDM based on semi-structured interviews with staff involved in the development of RDM policy and services. The data are interpreted using insights from Actor Network Theory. Findings: RDM policy formation and service development has created a complex set of networks within and beyond institutions involving different professional groups with widely varying priorities shaping activities. Data sharing is considered an important activity in the policies and services of HEIs studied, but its prominence can in most cases be attributed to the positions adopted by large research funders. Research limitations/implications: The case studies, as research based on qualitative data, cannot be assumed to be universally applicable but do illustrate a variety of issues and challenges experienced more generally, particularly in the UK. Practical implications: The research may help to inform development of policy and practice in RDM in HEIs and funder organisations. Originality/value: This paper makes an early contribution to the RDM literature on the specific topic of the relationship between RDM policy and services, and openness – a topic which to date has received limited attention.

Towards Interoperability in P2P World: an Indexing Middleware for Multi-Protocol Peer-to-Peer Data Sharing

Despite the abundant availability,of protocols and application for peer-to-peer file sharing, several drawbacks are still present in the field. Among most notable drawbacks is the lack of a simple and interoperable way to share information among independent peer-to-peer networks. Another drawback is the requirement that the shared content can be accessed only by a limited number of compatible applications, making impossible their access to others applications and system. In this work we present a new approach for peer-to-peer data indexing, focused on organization and retrieval of metadata which describes the shared content. This approach results in a common and interoperable infrastructure, which provides a transparent access to data shared on multiple data sharing networks via a simple API. The proposed approach is evaluated using a case study, implemented as a cross-platform extension to Mozilla Fir fox browser; and demonstrates the advantages of such interoperability over conventional distributed data access strategies.

Towards interoperability in P2Pworld: An indexing middleware for multi-protocol peer-to-peer data sharing

Despite the abundant availability of protocols and application for peer-to-peer file sharing, several drawbacks are still present in the field. Among most notable drawbacks is the lack of a simple and interoperable way to share information among independent peer-to-peer networks. Another drawback is the requirement that the shared content can be accessed only by a limited number of compatible applications, making impossible their access to others applications and system. In this work we present a new approach for peer-to-peer data indexing, focused on organization and retrieval of metadata which describes the shared content. This approach results in a common and interoperable infrastructure, which provides a transparent access to data shared on multiple data sharing networks via a simple API. The proposed approach is evaluated using a case study, implemented as a cross-platform extension to Mozilla Firefox browser, and demonstrates the advantages of such interoperability over conventional distributed data access strategies. © 2009 IEEE.

Report of the ECLAC Expert Group meeting on data sharing, data ownership and harmonization of survey datasets

Includes bibliography

Evaluation report: regional training workshop on data sharing, data ownerhsip and the harmonization of survey datasets

As part of ongoing efforts to strengthen the statistical capacities of National Statistical Offices (NSOs) in the region, the Economic Commission for Latin America and the Caribbean (ECLAC) convened a two-day Regional Training Workshop on Data Sharing, Data Ownership and Harmonization of Survey Datasets on 26-27 August 2009 at the Cascadia Hotel, Trinidad and Tobago. This workshop was one of the concluding activities of the Project on Improving Household Surveys in the Caribbean which has been implemented by the ECLAC Subregional office from 2007.

Precompetitive data sharing as a catalyst to address unmet needs in Parkinson's disease

Parkinson's disease is a complex heterogeneous disorder with urgent need for disease-modifying therapies. Progress in successful therapeutic approaches for PD will require an unprecedented level of collaboration. At a workshop hosted by Parkinson's UK and co-organized by Critical Path Institute's (C-Path) Coalition Against Major Diseases (CAMD) Consortiums, investigators from industry, academia, government and regulatory agencies agreed on the need for sharing of data to enable future success. Government agencies included EMA, FDA, NINDS/NIH and IMI (Innovative Medicines Initiative). Emerging discoveries in new biomarkers and genetic endophenotypes are contributing to our understanding of the underlying pathophysiology of PD. In parallel there is growing recognition that early intervention will be key for successful treatments aimed at disease modification. At present, there is a lack of a comprehensive understanding of disease progression and the many factors that contribute to disease progression heterogeneity. Novel therapeutic targets and trial designs that incorporate existing and new biomarkers to evaluate drug effects independently and in combination are required. The integration of robust clinical data sets is viewed as a powerful approach to hasten medical discovery and therapies, as is being realized across diverse disease conditions employing big data analytics for healthcare. The application of lessons learned from parallel efforts is critical to identify barriers and enable a viable path forward. A roadmap is presented for a regulatory, academic, industry and advocacy driven integrated initiative that aims to facilitate and streamline new drug trials and registrations in Parkinson's disease.