https://hdl.handle.net/2123/2662 2026-06-13T10:51:56Z https://hdl.handle.net/2123/2685 A Primer in the Politics of Privacy and Research Ruschena, David Privacy legislation in Australia is experiencing interesting times. The Australian Law Reform Commission (ALRC) has published its Discussion Paper on its Review of Australian Privacy Law dealing with the potential amendment of the Commonwealth Privacy Act.2 The ALRC review is the third review of the Act in the past three years, with additional reviews being performed by the Australian Office of the Privacy Commissioner (OPC).3 In short, this is an area where considerable developments are being proposed and considered. The Discussion Paper recommends significant changes both to the structure of Australian privacy legislation4 and to the substantive obligations. Recommended changes to substantive obligations will impact research by imposing obligations regarding the privacy of deceased persons5 and third parties whose information was not solicited,6 and by imposing an obligation to ensure that the personal information they collect is relevant to the purpose for which it is collected.7 These developments should be taken seriously. Some researchers consider that the Privacy Act presents a significant obstacle in the conduct of research.8 There is no doubt that, compared to untrammelled rights of access, the Privacy Act has resulted in higher research costs, lost opportunities, less effective research and sub-optimal quality of data. However, privacy legislation has the potential to be even more burdensome than it is, or even to prevent research from occurring. It is in researchers’ bests interests to understand how that might occur. These developments are important not just because they might have a chilling effect on research, but because they show that community acceptance of research – and researcher’s need to use personal information to obtain significant results - cannot be taken for granted. The purpose of this chapter is to consider the political and legal landscape that surrounds privacy legislation and to argue that without a commitment by researchers to engage with the Australian society, privacy legislation will remain subject to change in this way. The chapter will commence by conducting a brief tour of the politics of rights. Privacy legislation was enacted to meet a perceived need, and that perception is more important than the reality. The chapter will then examine how research takes place in accordance with privacy legislation. It is argued that, although research may occur without obtaining the consent of subjects, the exceptions are both less available than they are perceived to be, and do not advance the cause of research generally. Ultimately, however, the framework of privacy law itself provides researchers with significant opportunities to influence the regulatory environment within which they must operate. This can be done in a simple way: by adopting the rule-of-thumb that wherever consent can be obtained, it should be obtained. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2672 Cyber Infrastructure for the Humanities and Social Sciences Unsworth, John In January 2003, a blue ribbon panel appointed by the National Science Foundation and led by Dan Atkins, of the University of Michigan, completed a report called ‘Revolutionising Science and Engineering through Cyberinfrastructure’.2 This report is a kind of provocation for the American Council of Learned Societies (ACLS) Commission on Cyberinfrastructure for the Humanities and Social Sciences, and there is a lot of other activity of this sort, going on right now —for example: 􀃠 Digital Archiving and the National Archives and Records Administration;3 􀃠 NSF ‘Post Digital Library Futures’ report;4 􀃠 NRC ‘Beyond Productivity’ report (2003);5 􀃠 The United Nations World Summit on the Information Society.6 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2668 Front matter - Legal Framework for e-Research Fitzgerald, Brian This book is the product of a conference that I convened at the Gold Coast Australia on the 11th and 12th of July 2007, titled Legal Framework for e-Research.1 The conference was undertaken as part of the research program of the Legal Framework for e-Research Project. The conference, the project and this book have been made possible with the support and sponsorship of the federal Department of Education Science and Training (DEST) which since 2008 has been restructured into the new departments of Education, Employment and Workplace Relations (DEEWR) and Innovation, Industry, Science and Research (DIISR). 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2669 Introduction Fitzgerald, Brian The conference and research project that produced this book have operated throughout 2006, 2007 and 2008 in a rapidly changing knowledge landscape. One of the most significant changes is that e- Research has moved from being a specialist activity or technique to one that now promises to be adopted as a methodology for almost all research. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2676 Open Data for Global Science Uhlir, Paul; Schröder, Peter The global science system stands at a critical juncture. On the one hand, it is overwhelmed by a hidden avalanche of ephemeral bits that are central components of modern research and of the emerging ‘cyberinfrastructure’4 for e-Science.5 The rational management and exploitation of this cascade of digital assets offers boundless opportunities for research and applications. On the other hand, the ability to access and use this rising flood of data seems to lag behind, despite the rapidly growing capabilities of information and communication technologies (ICTs) to make much more effective use of those data. As long as the attention for data policies and data management by researchers, their organisations and their funders does not catch up with the rapidly changing research environment, the research policy and funding entities in many cases will perpetuate the systemic inefficiencies, and the resulting loss or underutilisation of valuable data resources derived from public investments. There is thus an urgent need for rationalised national strategies and more coherent international arrangements for sustainable access to public research data, both to data produced directly by government entities and to data generated in academic and not-for-profit institutions with public funding. In this chapter, we examine some of the implications of the ‘data driven’ research and possible ways to overcome existing barriers to accessibility of public research data. Our perspective is framed in the context of the predominantly publicly funded global science system. We begin by reviewing the growing role of digital data in research and outlining the roles of stakeholders in the research community in developing data access regimes. We then discuss the hidden costs of closed data systems, the benefits and limitations of openness as the default principle for data access, and the emerging open access models that are beginning to form digitally networked commons. We conclude by examining the rationale and requirements for developing overarching international principles from the top down, as well as flexible, common-use contractual templates from the bottom up, to establish data access regimes founded on a presumption of openness, with the goal of better capturing the benefits from the existing and future scientific data assets. The ‘Principles and Guidelines for Access to Research Data from Public Funding’ from the Organisation for Economic Cooperation and Development (OECD), reported on in another article by Pilat and Fukasaku,6 are the most important recent example of the high-level (inter)governmental approach. The common-use licenses promoted by the Science Commons are a leading example of flexible arrangements originating within the community. Finally, we should emphasise that we focus almost exclusively on the policy—the institutional, socioeconomic, and legal aspects of data access—rather than on the technical and management practicalities that are also important, but beyond the scope of this article. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2688 Australian Survey on Legal Issues Facing e-Research Heffernan, Maree; Kiel-Chisholm, Scott The Legal Framework for e-Research Project lead by Professor Brian Fitzgerald and hosted by the Queensland University of Technology (QUT) is funded by the Australian Commonwealth Department of Education, Employment and Workplace Relations (DEEWR), formerly Education, Science and Training (DEST), under the Systemic Infrastructure Initiative (SII), Research Information Infrastructure Framework for Australian Higher Education, as part of the Commonwealth Government’s Backing Australia’s Ability – An Innovation Action Plan for the Future (BAA). The Project involves mapping out a sophisticated legal framework for e- Research and collaborative innovation. As we transition into the National Collaborative Research Infrastructure Strategy (NCRIS)2 era it is vitally important that social and legal aspects of the e-Research framework are developed in step with the rapid advances in technology. Only little work has been done in this area worldwide. This project is linking with key international actors to provide an internationally significant project. While the Open Access to Knowledge (OAK) Law Project3 aims to examine the role of open access to all in an Internet world, this project also focuses on open innovation within secure knowledge communities – both are vital aspects of the e-Research framework. The critical issue is working out legal models for e-Research that reflect the capacity of the technologies involved and can be implemented quickly, effectively and (in many instances) in an automated way. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2689 Author Biographies and Index Fitzgerald, Brian 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2674 The Law as Cyber Infrastructure Fitzgerald, Brian; Pappalardo, Kylie In almost everything we do, the law is present. However, we know that strict adherence to the law is not always observed for a variety of pragmatic reasons. Nevertheless, we also understand that we ignore the law at our own risk and sometimes we will suffer a consequence. In the realm of collaborative endeavour through networked cyberinfrastructure we know the law is not too far away. But we also know that a paranoid obsession with it will cause inefficiency and stifle the true spirit of research. The key for the lawyers is to understand and implement a legal framework that can work with the power of the technology to disseminate knowledge in such a way that it does not seem a barrier. This is difficult in any universal sense but not totally impossible. In this article, we will show how the law is responding as a positive agent to facilitate the sharing of knowledge in the cyberinfrastructure world. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2683 A Win:Win for Data Access: Balancing Public Good with Privacy Concerns Stanley, Fiona This chapter suggests that the current urgent issues facing modern societies demand the best information and knowledge from which decisions can be made. This is vital for governments at all levels, nongovernment organisations and researchers whose work is used by those making decisions and policy. Such information is commonly available but rarely used, linked, re-used and analysed intelligently to inform such decision-making. As many problems are global, finding, sharing and analysing such data in robust national and international collaborations are essential activities. Such problems include environmental degradation, climate change, global pandemics, increases in obesity and mental ill health, overpopulation and city planning, water, security, crime and youth unrest. A recent report entitled From Data to Wisdom, prepared for the Prime Minister’s Science, Engineering and Innovation Council (PMSEIC) made several recommendations to put Australia in a strong position to both monitor and analyse these pressing problems internally and to be at the international table, when appropriate, to participate in planning and evaluating global threats.2 One major issue in population data linkage is the balance between using individual health records on the total population for important public good activities, while at the same time ensuring that such private information is kept confidential. The rationale for using such data includes obtaining accurate and unbiased assessments of risks of disease and the effects of medical care. A win:win process to allow access and to protect privacy that has been developed and used in Western Australia for over 30 years is described below. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2682 Streamlining Collaborative Agreements in an e-Research World Austin, Anthony; Fitzgerald, Brian On 22 January 2008, the Australian Minister for Innovation, Science and Research announced a review of the ‘National Innovation System’2 which intends to analyse the Australian innovation system and to ‘build innovation capacity by bringing sectors, institutions and individuals together’.3 To achieve innovation through this style of collaboration, the different actors will inevitably need to engage with technologically enhanced research methods and practices known broadly as e-Research. The rapidly emerging e-Research landscape promises to accelerate the discovery of knowledge, to increase the access and dissemination of data and to provide the opportunity for the international and serendipitous exchange of knowledge. 4 The law will play a central role in this environment. It acts like an infrastructure to shape the flow of knowledge. In many collaborative projects, the negotiation and completion of agreements which outline the project are not only critical, but also represent one of the biggest barriers to effective collaboration. The purpose of this chapter is to consider how the negotiation and contractual frameworks for research can be streamlined to accommodate the coming era of collaborative e-Research. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2680 Creating a Legal Framework for Copyright Management of Open Access within the Australian Academic and Research Sector Fitzgerald, Brian; Fitzgerald, Anne; Perry, Mark; Kiel-Chisholm, Scott; Driscoll, Erin; Thampapillai, Dilan; Coates, Jessica There is an increasing recognition, in Australia and internationally, that access to knowledge is a key driver of social, cultural and economic development. The argument for greater access to, and reuse of, research outputs is reinforced by the fact that much research in Australia is funded by public money and, consequently, that there is a public benefit to be served by allowing citizens to access the outputs they have funded.2 This recognition poses both legal and policy challenges, in terms of existing legal frameworks such as copyright law and traditional business models. With the rise of networked digital technologies our knowledge landscape and innovation system is becoming more and more reliant on best practice copyright management strategies and there is a need to accommodate both the demands for open sharing of knowledge and traditional commercialisation models. As a result, new business models that support and promote open innovation are rapidly emerging. This chapter analyses the copyright law framework needed to ensure open access to outputs of the Australian academic and research sector such as journal articles and theses. It overviews the new knowledge landscape, the principles of copyright law, the concept of open access to knowledge, the recently developed open content models of copyright licensing and the challenges faced in providing greater access to knowledge and research outputs. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2686 Science as Social Enterprise: The CAMBIA BiOS Initiative Jefferson, Richard Nearly four billion people live on daily incomes lower than the price of a latté at Starbucks. Most of them make dramatically less than that—and from that income, they must acquire their food, their medicine, their shelter and clothing, their education, and their recreation, and they must build their future and their dreams. Their lives, and the quality of their lives, hinge on biological innovation. Biological innovation is the ability to harness living systems for our social, environmental and economic well-being. It is the oldest and most fundamental form of human innovation, involving as it does the getting of food, the striving for health, the making of homes, and the building of communities. The wealth created over the millennia through the domestication and husbandry of plants and animals has powered human society. Of all areas of biological innovation, agriculture is the most important, affecting our environment, our health, our economies, and the fabric of our societies. The world’s poorest nations depend largely on agriculture for their economic survival as well as their food, fuel and fibre. The challenges of innovation to create and sustain productive and environmentally sound agriculture are even more pronounced in these societies. Any failure to do so has enormous implications for the global community, over and above the social, economic, and environmental impacts. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2673 Designing Institutional Infrastructures for e-Science David, Paul A; Spence, Michael The opportunity exists today for unprecedented connections between scientists, information, data, computational services, and instruments through the Internet. A new generation of information and communication infrastructures, including advanced Internet computing and Grid technologies, is beginning to enable much greater direct and shared access to more widely distributed computing resources than previously has been possible.3 The term ‘e-Science’ usually is applied in reference to large scale science that, increasingly, is being carried out through distributed global collaborations enabled by the Internet.4 Such collaborative scientific enterprises typically require access to very extensive data collections, very large scale computing resources, and high performance visualisation of research data and analysis of results by the individual users. The potential for these advances in technology to support new levels of collaborative activity in scientific and engineering, and ultimately in other domains, is a major driving force behind the UK’s Core e-Science Programme.5 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2678 Cyberinfrastructure For Knowledge Sharing Wilbanks, John Knowledge sharing is at the root of scholarship and science. A hypothesis is formulated, research performed, experimental materials designed or acquired, tests run, data obtained and analysed, and finally a publication. The scholar writes a document outlining the work for dissemination in a scholarly journal. If it passes the litmus test of peer review, the research enters the canon of the discipline. Over time, it may become a classic with hundreds of citations. Or, more likely, it will join the vast majority of research, with less than two citations over its lifetime, its asserted contributions to the canon increasingly difficult to find – because, in our current world, citations are the best measure of relevance-based search available. But no matter the fate of an individual publication, the system of publishing is a system of sharing knowledge. We publish as scholars and scientists to share our discoveries with the world (and, of course, to be credited with those discoveries through additional research funding, tenure, and more). And this system has served science extraordinarily well over the more than three hundred years since scholarly journals were birthed in France and England. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2679 Working for a Research-Friendly IPR Framework in the UK Friend, Frederick Research institutions and individual researchers in many countries are facing intellectual property issues which are changing the way in which the results of research are disseminated, how those results are used and by whom, and how current research feeds into future research. Some of the key questions which will be determined in part at least by intellectual property issues are: 􀃠 access: will the text and data in research papers be accessible and under what licensing conditions? 􀃠 publication: how will text and data be published, in journals or held in personal or institutional repositories? 􀃠 ownership: will authors, employers, funders or publishers claim ownership of text and/or data? 􀃠 re-use: will owners restrict re-use, even for academic purposes? 􀃠 management: how will text and data silos be managed and by whom? 􀃠 preservation: how will text and data be preserved and by whom? These are key questions both for the current generation of researchers and also for future generations whose work may be helped or hindered – even prevented – by decisions being made now. The benefits flowing from today’s biomedical research would be impossible to achieve without the strong action taken by the research community a few years ago in opening the Human Genome Database for use without restriction. The commercial forces which almost locked away the genome data could lock away equally valuable research results in the future if the academic community does not ensure that appropriate intellectual property rights remain within the academic community. When commercial interests control rights in content generated within the academic sector, it is sometimes due to academic neglect of IPR issues. The work described in this chapter is informing the UK academic community of possibilities for the good management of research text and data. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2677 NIH Data and Resource Sharing, Data Release and Intellectual Property Policies for Genomics Community Resource Projects Driscoll, Claire Most observers predict significant health-related gains from genomics research. Policy and legal decisions made by government institutions, the courts and legislatures have the potential to make a significant impact on both the quantity and quality of effective and innovative healthcare-related products ultimately derived from the vibrant genomics research enterprise. In particular, the careful management of the intellectual property (IP) aspects of this promising area of research will be necessary to maximise scientific progress, provide appropriate incentives for investment, and ultimately ensure optimal public benefit. It is the mission of the US National Institutes of Health (NIH), which is comprised of 27 individual institutes and is an agency of the US Department of Health and Human Services, to facilitate the translation of basic biomedical research discoveries into useful healthcare services and products. Within the NIH, the National Human Genome Research Institute (NHGRI) is the agency’s lead entity for advancing human health through genetic research.Through its stewardship of an array of infrastructure and research projects, including several innovative public-private consortia efforts, the NHGRI seeks to contribute to the genomic tools, data and knowledge bases. In general, I believe that scientific progress in this still young field will be best served by early, open and continuing access to: i) comprehensive, high-quality data sets containing basic biological and biochemical data; and ii) critical biological materials such as animal models and genes. Data such as the complete nucleotide sequence of many different organisms’ genomes, information on genetic variation within and among populations, and results on how gene expression is regulated at the cellular and molecular level are often referred to as ‘precompetitive’ information, and in my view should be made rapidly available to all, without restrictions on use. Adherence by data and resource producers and users to this simple strategy should ensure that industry and academic researchers will be able to build upon this strong foundation. At the NIH we are expected to support basic scientific discovery whilst simultaneously facilitating the appropriate commercial research and development of the results of our formidable research programs. A sizeable number of end users for these resource projects are employed with private sector companies. For this constituency the terms governing the data use, data release, the sharing and distribution of research resources and intellectual property rights of derivative inventions are of particular importance. Policies that limit companies’ ability to file patent applications or licence downstream uses could end up having an unintended inhibitory effect on the development of biomedical products. Government policies need to balance the important dual goals of continuing to rapidly place huge amounts of data in the public domain and encouraging restriction-free sharing of genomic tools, whilst also ensuring that more applied inventions, notably those closer to being an actual product, can be patented. US taxpayers, and especially patients, would like the government to appropriately foster the commercialisation of promising inventions derived from use of the data and reagents generated by these efforts. Currently, the NHGRI is actively involved in the development and vetting of policy options aimed at ensuring that genomic tools, resources and databases of genomic information are used in a manner that promotes scientific research and the practice of medicine. Relevant policies implemented by NIH-supported public private consortia efforts such the International Human Genome Sequencing Consortium (IHGSC),2 the Trans-NIH Mouse Initiative,3 the Mammalian Gene Collection (MGC)4 and the International Haplotype Map Project (HapMap)5 are specifically covered in this review. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2675 Understanding the Legal Implications of Data Sharing, Access and Reuse in the Australian Research Landscape Fitzgerald, Anne; Pappalardo, Kylie; Austin, Anthony In today’s world, researchers are increasingly involved in data-intensive research projects that cut across geographic and disciplinary borders.5 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.6 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.7 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.8 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.9 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. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2670 The Fifth Dimension Greer, Chris The aim of this chapter is to consider a five-dimensional world made possible by cyber-infrastructure and how this notion influences legal frameworks. In discussing this five-dimensional world I will highlight fundamental challenges that hinder this vision, which is a shared vision, not unique to the National Science Foundation, but common to countries throughout the world. I will also consider strategies that could assist in achieving this fifth dimension. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2681 The University-Industry Demonstration Partnership: An Incremental Improvement to University-Industry Collaboration Casey, James J The cover of the July/August 2007 issue of the Harvard Business Review has two phrases that sum up the goals of university-industry collaboration: ‘Managing for the Long Term’ and ‘Going the Distance’. Although those phrases were meant for companies, these phrases accurately reflect what university-industry collaborations and the University-Industry Demonstration Partnership (UIDP) are all about. Put another way, university-industry collaborations are critical long-term infrastructure developments. Managing for the long term should be a goal for all managers of these partnerships. This chapter addresses a number of topics. First, it discusses recent initiatives in the United States to strengthen these collaborations, particularly the University-Industry Partnership Project (UIPP). Then, it transitions to discuss the UIDP and its first demonstration project— TurboNegotiator (TN). Lastly, the chapter makes some concluding observations about the UIDP, TN, and university-industry collaborations in general. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2684 Privacy Regulation and e-Research Hayne, Andrew The Office of the Privacy Commissioner appreciates the kind invitation from the Law Faculty at Queensland University of Technology to present at the 2007 Legal Framework for e-Research Conference. This legal framework project coincides with a key period for privacy regulation in Australia, most significantly due to the current inquiry into privacy law being conducted by the Australian Law Reform Commission (ALRC). At the same time, public policy is increasingly examining how best to facilitate research interests through the use of personal information. The Office notes, for example, the National Data Network initiative,2 as well as the inquiry conducted by the Productivity Commission3 into the role of research in Australia, to which the Office made a submission.4 In this chapter I aim to provide a brief overview of federal information privacy regulation, particularly as it applies to health and medical research, as well as to thumbnail possible opportunities for reform that may emerge from the current ALRC inquiry. These opportunities are discussed in detail in the Office’s submission to that inquiry, available from our website.5 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2687 e-Research and Jurisdiction Middleton, Gaye As part of their daily activities, those involved in e-research will often transfer information, including background materials, research results and software, across state and national borders. The act of transferring information across state and national borders raises a number of jurisdictional issues. This chapter will discuss key issues regarding intellectual property, privacy and dispute resolution as they arise from eresearchers transferring information across state and national borders, and how these issues may contractually be resolved. 2008-01-01T00:00:00Z https://hdl.handle.net/2123/2671 Innovation and Open Access to Public Sector Information Cutler, Terry Most speakers at this summit have been looking at open access from the supply side, presenting the points of view of custodians of government information. What might we lob over the fence to whoever is on the other side? So far we have not paid much attention to this demand side - the potential beneficiaries of changed information policies. So I see it as my task to address what I believe is the core rationale for this policy initiative, which is the promotion of innovation and creativity. My perspective on the topic brings together my deep interest in the whole matter of innovation, and my long involvement with the digital content industries. Why do we need to act on this possible policy initiative? I will try to put the question in the context of some conceptual frameworks and models of innovation, and of business models for information and content production. My premise is that data and information – content – is the currency of creativity and innovation. Information is what energises our national innovation system. Governments produce and hold a wealth of information and data. 2008-01-01T00:00:00Z