p-BioSPRE-an information and communication technology framework for transnational biomaterial sharing and access

Biobanks represent key resources for clinico-genomic research and are needed to pave the way to personalised medicine. To achieve this goal, it is crucial that scientists can securely access and share high-quality biomaterial and related data. Therefore, there is a growing interest in integrating biobanks into larger biomedical information and communication technology (ICT) infrastructures. The European project p-medicine is currently building an innovative ICT infrastructure to meet this need. This platform provides tools and services for conducting research and clinical trials in personalised medicine. In this paper, we describe one of its main components, the biobank access framework p-BioSPRE (p-medicine Biospecimen Search and Project Request Engine). This generic framework enables and simplifies access to existing biobanks, but also to offer own biomaterial collections to research communities, and to manage biobank specimens and related clinical data over the ObTiMA Trial Biomaterial Manager. p-BioSPRE takes into consideration all relevant ethical and legal standards, e.g., safeguarding donors’ personal rights and enabling biobanks to keep control over the donated material and related data. The framework thus enables secure sharing of biomaterial within open and closed research communities, while flexibly integrating related clinical and omics data. Although the development of the framework is mainly driven by user scenarios from the cancer domain, in this case, acute lymphoblastic leukaemia and Wilms tumour, it can be extended to further disease entities.

The Lausanne Institutional Biobank: a new resource to catalyse research in personalised medicine and pharmaceutical sciences.

Breakthrough technologies which now enable the sequencing of individual genomes will irreversibly modify the way diseases are diagnosed, predicted, prevented and treated. For these technologies to reach their full potential requires, upstream, access to high-quality biomedical data and samples from large number of properly informed and consenting individuals and, downstream, the possibility to transform the emerging knowledge into a clinical utility. The Lausanne Institutional Biobank was designed as an integrated, highly versatile infrastructure to harness the power of these emerging technologies and catalyse the discovery and development of innovative therapeutics and biomarkers, and advance the field of personalised medicine. Described here are its rationale, design and governance, as well as parallel initiatives which have been launched locally to address the societal, ethical and technological issues associated with this new bio-resource. Since January 2013, inpatients admitted at Lausanne CHUV University Hospital have been systematically invited to provide a general consent for the use of their biomedical data and samples for research, to complete a standardised questionnaire, to donate a 10-ml sample of blood for future DNA extraction and to be re-contacted for future clinical trials. Over the first 18 months of operation, 14,459 patients were contacted, and 11,051 accepted to participate in the study. This initial 18-month experience illustrates that a systematic hospital-based biobank is feasible; it shows a strong engagement in research from the patient population in this University Hospital setting, and the need for a broad, integrated approach for the future of medicine to reach its full potential.

Public internet access revisited

In recent years the Australian government has dedicated considerable project funds to establish public Internet access points in rural and regional communities. Drawing on data from a major Australian study of the social and economic impact of new technologies on rural areas, this paper explores some of the difficulties rural communities have faced in setting up public access points and sustaining them beyond their project funding. Of particular concern is the way that economic sustainability has been positioned as a measure of the success of such ventures. Government funding has been allocated on the basis of these rural public access points becoming economically self-sustaining. This is problematic on a number of counts. It is therefore argued that these public access points should be reconceptualised as essential community infrastructure like schools and libraries, rather than potential economic enterprises. Author Keywords: Author Keywords: Internet; Public access; Sustainability; Digital divide; Rural Australia

Access all

Access All was performance produced following a three-month mentorship in web-based performance that I was commissioned to conduct for the performance company Igneous. This live, triple-site performance event for three performers in three remote venues was specifically designed for presentation at Access Grid Nodes - conference rooms located around the globe equipped with a high end, open source computer teleconferencing technology that allowed multiple nodes to cross-connect with each other. Whilst each room was setup somewhat differently they all deployed the same basic infrastructre of multiple projectors, cameras, and sound as well as a reconfigurable floorspace. At that time these relatively formal setups imposed a clear series of limitations in terms of software capabilities and basic infrastructure and so there was much interest in understanding how far its capabilities might be pushed.----- Numerous performance experiments were undertaken between three Access Grid nodes in QUT Brisbane, VISLAB Sydney and Manchester Supercomputing Centre, England, culminating in the public performance staged simultaneously between the sites with local audiences at each venue and others online. Access All was devised in collaboration with interdisciplinary performance company Bonemap, Kelli Dipple (Interarts curator, Tate Modern London) and Mike Stubbs British curator and Director of FACT (Liverpool).----- This period of research and development was instigated and shaped by a public lecture I had earlier delivered in Sydney for the ‘Global Access Grid Network, Super Computing Global Conference’ entitled 'Performance Practice across Electronic Networks'. The findings of this work went on to inform numerous future networked and performative works produced from 2002 onwards.

The public management issues of access to electronic gaming machines (EGMs) : a case study of policy in Victoria, its effects and requirements for evaluation

Wynne and Schaffer (2003) have highlighted both the strong growth of gambling activity in recent years, and the revenue streams this has generated for governments and communities. Gambling activities and the revenues derived from them have, unsurprisingly, therefore also been seen as a way in which to increase economic development in deprived areas (Jinkner-Lloyd, 1996). Consequently, according to Brown et al (2003), gambling is now a large taxation revenue earner for many western governments, at both federal and state levels, worldwide (for example UK, USA, Australia). In size and importance, the Australian gambling industry in particular has grown significantly over the last three decades, experiencing a fourfold increase in real gambling turnover. There are, however, also concerns expressed about gambling and Electronic Gaming in particular, as illustrated in economic, social and ethical terms in Oddo (1997). There are also spatial aspects to understanding these issues. Marshall’s (1998) study, for example, highlights that benefits from gambling are more likely to accrue at the macro as opposed to the local level, because of centralised tax gathering and spending of tax revenues, whilst localities may suffer from displacement of activities with higher multipliers than the institutions with EGMs that replace them. This also highlights a regional context of costs, where benefits accrue to the centre, but the costs accrue to the regions and localities, as simultaneously resources leave those communities through both the gambling activities themselves (in the form of revenue for the EGM owners), and the government (through taxes).