Biobanking of blood and bone marrow : emerging challenges for custodians of public resources

The Australian Bone Marrow Donor Registry (ABMDR) is a publicly funded company that is part of an international network that facilitates unrelated bone marrow transplantation. This role means that the ABMDR has access to a large biospecimen repository, therefore making it a highly valuable research resource. Recognising the potential value of these biospecimens for research purposes, the ABMDR is in the process of determining whether, and how, to share its biospecimens with other biobanks. While this would undoubtedly be of value to the scientific community, and ultimately to the wider community, it would also inevitably transform the role of an institution whose primary role is therapeutic, and would compromise the degree of control that a custodian has over donated material. This article describe the challenges confronting the ABMDR, and organisations like it, in balancing their duties to donors, patients, researchers and the general public. These problems have led inevitably to the use of "property" rights language in the discussion of these issues but notions of gift, ownership, trusteeship and transfer might also be considered.

Study of the discovery potential of light custodians in a clean decay channel at the LHC

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Diagnostic and treatment pathways for men with prostate cancer in Queensland : investigating spatial and demographic inequalities

Background: Patterns of diagnosis and management for men diagnosed with prostate cancer in Queensland, Australia, have not yet been systematically documented and so assumptions of equity are untested. This longitudinal study investigates the association between prostate cancer diagnostic and treatment outcomes and key area-level characteristics and individual-level demographic, clinical and psychosocial factors.---------- Methods/Design: A total of 1064 men diagnosed with prostate cancer between February 2005 and July 2007 were recruited through hospital-based urology outpatient clinics and private practices in the centres of Brisbane, Townsville and Mackay (82% of those referred). Additional clinical and diagnostic information for all 6609 men diagnosed with prostate cancer in Queensland during the study period was obtained via the population-based Queensland Cancer Registry. Respondent data are collected using telephone and self-administered questionnaires at pre-treatment and at 2 months, 6 months, 12 months, 24 months, 36 months, 48 months and 60 months post-treatment. Assessments include demographics, medical history, patterns of care, disease and treatment characteristics together with outcomes associated with prostate cancer, as well as information about quality of life and psychological adjustment. Complementary detailed treatment information is abstracted from participants’ medical records held in hospitals and private treatment facilities and collated with health service utilisation data obtained from Medicare Australia. Information about the characteristics of geographical areas is being obtained from data custodians such as the Australian Bureau of Statistics. Geo-coding and spatial technology will be used to calculate road travel distances from patients’ residences to treatment centres. Analyses will be conducted using standard statistical methods along with multilevel regression models including individual and area-level components.---------- Conclusions: Information about the diagnostic and treatment patterns of men diagnosed with prostate cancer is crucial for rational planning and development of health delivery and supportive care services to ensure equitable access to health services, regardless of geographical location and individual characteristics. This study is a secondary outcome of the randomised controlled trial registered with the Australian New Zealand Clinical Trials Registry (ACTRN12607000233426)

Doing justice : young people’s representations of the Murray-Darling Basin

The business of helping children to grow up as ‘custodians’, or ‘future managers’ of the Murray-Darling Basin is not simple, and that single sources of information and ways of seeing the environment are not enough. Children (and adults) need to be able to relate individually, emotionally and aesthetically to their places if they are to learn to love them. However, they also need access to a variety of ways of thinking and seeing those same places if they are to be able to take action to sustain them – action that inevitably involves forms of communication with their fellow citizens. This chapter documents the writing and art program Special Forever, with its focus on communications, as an important intervention into promoting eco-social sustainability.

Pass the scissors : consumers close in on the fashion industry

The fashion ecosystem is at boiling point as consumers turn up the heat in all areas of the fashion value, trend and supply chain. While traditionally fashion has been a monologue from designer brand to consumer, new technology and the virtual world has given consumers a voice to engage brands in a conversation to express evolving needs, ideas and feedback. Product customisation is no longer innovative. Successful brands are including customers in the design process and holding conversations ‘with’ them to improve product, manufacturing, sales, distribution, marketing and sustainable business practices. Co-creation and crowd sourcing are integral to any successful business model and designers and manufacturers are supplying the technology or tools for these creative, active, participatory ‘prosumers’. With this collaboration however, there arises a worrying trend for fashion professionals. The ‘design it yourself’, ‘indiepreneur’ who with the combination of technology, the internet, excess manufacturing capacity, crowd funding and the idea of sharing the creative integrity of a product (‘copyleft’ not copyright) is challenging the notion that the fashion supply chain is complex. The passive ‘consumer’ no longer exists. Fashion designers now share the stage with ‘amateur’ creators who are disrupting every activity they touch, while being motivated by profit as well as a quest for originality and innovation. This paper examines the effects this ‘consumer’ engagement is having on traditional fashion models and the fashion supply chain. Crowd sourcing, crowd funding, co-creating, design it yourself, global sourcing, the virtual supply chain, social media, online shopping, group buying, consumer to consumer marketing and retail, and branding the ‘individual’ are indicative of the new consumer-driven fashion models. Consumers now drive the fashion industry - from setting trends, through to creating, producing, selling and marketing product. They can turn up the heat at any time _ and any point _ in the fashion supply chain. They are raising the temperature at each and every stage of the chain, decreasing or eliminating the processes involved: decreasing the risk of fashion obsolescence, quantities for manufacture, complexity of distribution and the consumption of product; eliminating certain stages altogether and limiting the brand as custodians of marketing. Some brands are discovering a new ‘enemy’ – the very people they are trying to sell to. Keywords: fashion supply chain, virtual world, consumer, ‘prosumers’, co-creation, fashion designers

Free our cultural archives.

Australians are the creators and custodians of a broad range of cultural materials. This material includes literary, photographic, video and audio archives. These archives should be made available to all Australians for access and reuse, as part of a pre-competitive platform which promotes the interests of the Australian public in gaining access to a diverse range of content that contributes to the development of national and cultural identity. This does not mean that all material must be made available for access and reuse for free and in an unrestricted fashion. But for publicly funded content, free and unrestricted access should be the default. The Venturous Australia report on the National Innovation System recommended that “[t]o the maximum extent possible, information, research and content funded by Australian governments – including national collections – should be made freely available over the internet as part of the global public commons.”1 The report further stated that “both for its direct and indirect benefits to Australia and for the greater global good, Australia should energetically and proudly maximise the extent to which it makes government funded content available as part of the global digital commons...

Juggling information policy, rights to information and copyright licensing to enhance the accessibility and reusability of spatial data : the Australian experience

There is still no comprehensive information strategy governing access to and reuse of public sector information, applying on a nationwide basis, across all levels of government – local, state and federal - in Australia. This is the case both for public sector materials generally and for spatial data in particular. Nevertheless, the last five years have seen some significant developments in information policy and practice, the result of which has been a considerable lessening of the barriers that previously acted to impede the accessibility and reusability of a great deal of spatial and other material held by public sector agencies. Much of the impetus for change has come from the spatial community which has for many years been a proponent of the view “that government held information, and in particular spatial information, will play an absolutely critical role in increasing the innovative capacity of this nation.”1 However, the potential of government spatial data to contribute to innovation will remain unfulfilled without reform of policies on access and reuse as well as the pervasive practices of public sector data custodians who have relied on government copyright to justify the imposition of restrictive conditions on its use.

Enabling access to research data in developing countries : designing a policy and practice framework for Malaysia’s Public Research Universities

Members of the World Trade Organisation (WTO) are obliged to implement the Agreement on Trade-related Intellectual Property Rights 1994 (TRIPS) which establishes minimum standards for the protection and enforcement of intellectual property rights. Almost two decades after TRIPS was adopted at the conclusion of the Uruguay Round of trade negotiations, it is widely accepted that intellectual property systems in developing and least-developed countries must be consistent with, and serve, their development needs and objectives. In adopting the Development Agenda in 2007, the World Intellectual Property Organisation (WIPO) emphasised the importance to developing and least-developed countries of being able to obtain access to knowledge and technology and to participate in collaborations and exchanges with research and scientific institutions in other countries. Access to knowledge, information and technology is crucial if creativity and innovation is to be fostered in developing and least-developed countries. It is particularly important that developing and least-developed countries give effect to their TRIPS obligations by implementing intellectual property systems and adopting intellectual property management practices that enable them to benefit from knowledge flows and support their engagement in international research and science collaborations. However, developing and least-developed countries did not participate in the deliberations leading to the adoption in 2004 by Organisation for Economic Co-operation and Development (OECD) member countries of the Ministerial Declaration on Access to Research Data from Public Funding, nor have they formulated policies on access to publicly funded research outputs such as those developed by the National Institutes of Health in the United States, the United Kingdom Research Councils or the Australian National Health and Medical Research Council. These issues are considered from the viewpoint of Malaysia, a developing country whose economy has grown strongly in recent years. Lacking an established policy covering access to the outputs of publicly funded research, data sharing and licensing practices continue to be fragmented. Obtaining access to research data requires arrangements to be negotiated with individual data owners and custodians. Given the potential for restrictions on access to impact negatively on scientific progress and development in Malaysia, measures are required to ensure that access to knowledge and research results is facilitated. This paper proposes a policy framework for Malaysia‘s public research universities that recognises intellectual property rights while enabling the open access to research data that is essential for innovation and development. It also considers how intellectual property rights in research data can be managed in order to give effect to the policy‘s open access objectives.

Privacy : bad for your health?

TO THE EDITOR: In Australia, personal and health information that identifies an individual cannot be used or disclosed for research without specific requirements being met.1 Even if these requirements are met, data custodians may still refuse access if their views are discordant with those of the relevant human research ethics committee (HREC). It is now evident that there are adverse consequences of this well-meaning legislation...

Suomen Taideyhdistyksestä Ateneumiin : Fredrik Cygnaeus, Carl Gustaf Estlander ja taidekokoelman roolit

From the Finnish Art Society to the Ateneum: Fredrik Cygnaeus, Carl Gustaf Estlander and the Roles of the Art Collection My dissertation deals with the Finnish Art Society and the development of its collection in the evolving field of the visual arts from the foundation of the society in 1846 to its exhibition in the Ateneum, a palace of art that was opened to the public in Helsinki in 1888. The main questions that it addresses are why and how the collection came into being, what its purpose was and what kind of future prospects were projected for it in the rapidly evolving field of the visual arts. I have examined the subject of my study from the perspectives of institutional history, the organisation of the field of art and the history of art collections. The prisms through which I have viewed the subject are the history of museums in Europe, the written history of art, the art association movement and the organisation of art education in relation to an ideology of enlightenment. Thus the activities of the Finnish Art Society are here mirrored for the first time in a wider context and the history of its collection located on the map of European collections. My research shows that the history of the collection of the Finnish Art Society initially depended on certain players in the visual arts and their particular leanings. The most important of these custodians were two long-serving chairmen of the society, Fredrik Cygnaeus (1807 1881) and Carl Gustaf Estlander (1834 1910). When the foundations for art activities had been laid through the establishment of the society, Cygnaeus and Estlander began to plan how the field of art might be moulded so as to improve the level of training for artists and to improve the quality of the collections and the opportunities for their display. Cygnaeus campaigned for the establishment of the Finnish Fine Arts Academy, while Estlander saw opportunities to combine the visual and applied arts. The findings of my research bring new information about the history of the collection of the Finnish Art Society, its profile, the professional abilities of those who were mainly responsible for developing it and the relationship between it and plans for reforming art education. The major findings are connected with the position of the collection in the field of art at different stages of its development. Despite the central monopoly of the Finnish Art Society in the field of art, the position of the collection was closely bound up with leading players in the field of art and their personal interests. This subservience also created an impediment to its full-blown enhancement and purposeful profiling, and it remained evident for a long time when the collection was seeking its own place in the Finnish art world.

Marine Biodiversity Data Flow in the UK

The report provides a review of the current level of exchange in marine life data and its management in the UK taking into account the current structures that are in place between data providers, custodians and managers. In addition, the report makes recommendations on how data flow can be improved over the next few years to achieve greater exchange and interoperability within the marine sector.

Nakagami Kenji : un projet littéraire et social autour du statut des intouchables japonais

L’étude porte sur la question des burakumin, les intouchables japonais, dans deux oeuvres de l’écrivain japonais Nakagami Kenji (1946-1992), lui-même issu de cette communauté. Mille ans de plaisir, recueil de six contes basés sur des récits de vie, et le roman Miracle forment une suite organisée autour des mêmes lieux, des mêmes personnages et des mêmes thèmes. Ils décrivent la condition sociale d’une collectivité mise au ban de la société japonaise malgré sa modernisation. Ils se distinguent par leur caractère d’ethnofiction. Nakagami cherche à réhabiliter les burakumin en valorisant le patrimoine religieux et folklorique dont ils sont dépositaires. Il puise dans les genres traditionnels comme le monogatari ou les contes et légendes du Japon. Il s’inspire également d’auteurs modernes japonais (Mishima, Tanizaki) et d’auteurs étrangers (Faulkner, García-Márquez). À partir de cet intertexte et pour faire barrage à l’occidentalisation, il élabore un style « hybride » digne de la littérature nationale (kokubungaku). Les oeuvres traditionnelles sont réinterprétées dans une esthétique postmoderne ayant une fonction ironique et critique contre l’idéologie impériale répressive qui continue d’alimenter la discrimination envers les burakumin. L’analyse porte sur les procédés qui sous-tendent le projet social et le projet littéraire de l’auteur. Elle se divise en trois parties. La première donne un aperçu biographique de l’auteur et décrit les composantes de son projet social qui consiste à vouloir changer l’image et le statut des burakumin. La deuxième partie décrit les éléments religieux et folkloriques des deux oeuvres et analyse en contexte leur signification ainsi que leur fonction, qui est de mettre en valeur les traditions préservées par les burakumin. La troisième partie montre en quoi le répertoire traditionnel (monogatari) et les intertextes sont mis au service du projet littéraire proprement dit.