The empire of cancer: Gene patents and cancer voices

In his book, The Emperor of All Maladies, Siddhartha Mukherjee writes a history of cancer — "It is a chronicle of an ancient disease — once a clandestine, 'whispered-about' illness — that has metamorphosed into a lethal shape-shifting entity imbued with such penetrating metaphorical, medical, scientific, and political potency that cancer is often described as the defining plague of our generation." Increasingly, an important theme in the history of cancer is the role of law, particularly in the field of intellectual property law. It is striking that a number of contemporary policy debates over intellectual property and public health have concerned cancer research, diagnosis, and treatment. In the area of access to essential medicines, there has been much debate over Novartis’ patent application in respect of Glivec, a treatment for leukaemia. India’s Supreme Court held that the Swiss company’s patent application violated a safeguard provision in India’s patent law designed to stop evergreening. In the field of tobacco control, the Australian Government introduced plain packaging for tobacco products in order to address the health burdens associated with the tobacco epidemic. This regime was successfully defended in the High Court of Australia. In the area of intellectual property and biotechnology, there have been significant disputes over the Utah biotechnology company Myriad Genetics and its patents in respect of genetic testing for BRCA1 and BRCA2, which are related to breast cancer and ovarian cancer. The Federal Court of Australia handed down a decision on the validity of Myriad Genetics’ patent in respect of genetic testing for BRCA1 in February 2013. The Supreme Court of the United States heard a challenge to the validity of Myriad Genetics’ patents in this area in April 2013, and handed down a judgment in July 2013. Such disputes have involved tensions between intellectual property rights, and public health. This article focuses upon one of these important test cases involving intellectual property, public health, and cancer research. In June 2010, Cancer Voices Australia and Yvonne D’Arcy brought an action in the Federal Court of Australia against the validity of a BRCA1 patent — held by Myriad Genetics Inc, the Centre de Recherche du Chul, the Cancer Institute of Japan and Genetic Technologies Limited. Yvonne D’Arcy — a Brisbane woman who has had treatment for breast cancer — maintained: "I believe that what they are doing is morally and ethically corrupt and that big companies should not control any parts of the human body." She observed: "For my daughter, I've had her have [sic] mammograms, etc, because of me but I would still like her to be able to have the test to see if the mutation gene is in there from me." The applicants made the following arguments: "Genes and the information represented by human gene sequences are products of nature universally present in each individual, and the information content of a human gene sequence is fixed. Genetic variations or mutations are products of nature. The isolation of the BRCA1 gene mutation from the human body constitutes no more than a medical or scientific discovery of a naturally occurring phenomenon and does not give rise to a patentable invention." The applicants also argued that "the alleged invention is not a patentable invention in that, so far as claimed in claims 1–3, it is not a manner of manufacture within the meaning of s 6 of the Statute of Monopolies". The applicants suggested that "the alleged invention is a mere discovery". Moreover, the applicants contended that "the alleged invention of each of claims 1-3 is not a patentable invention because they are claims for biological processes for the generation of human beings". The applicants, though, later dropped the argument that the patent claims related to biological processes for the generation of human beings. In February 2013, Nicholas J of the Federal Court of Australia considered the case brought by Cancer Voices Australia and Yvonne D’Arcy against Myriad Genetics. The judge presented the issues in the case, as follows: "The issue that arises in this case is of considerable importance. It relates to the patentability of genes, or gene sequences, and the practice of 'gene patenting'. Briefly stated, the issue to be decided is whether under the Patents Act 1990 (Cth) a valid patent may be granted for a claim that covers naturally occurring nucleic acid — either deoxyribonucleic acid (DNA) or ribonucleic acid (RNA) — that has been 'isolated'". In this context, the word "isolated" implies that naturally occurring nucleic acid found in the cells of the human body, whether it be DNA or RNA, has been removed from the cellular environment in which it naturally exists and separated from other cellular components also found there. The genes found in the human body are made of nucleic acid. The particular gene with which the patent in suit is concerned (BRCA1) is a human breast and ovarian cancer disposing gene. Various mutations that may be present in this gene have been linked to various forms of cancer including breast cancer and ovarian cancer.' The judge held in this particular case that Myriad Genetics’ patent claims were a "manner of manufacture" under s 6 of the Statute of Monopolies and s 18(1)(a) of the Patents Act 1990 (Cth). The matter is currently under appeal in the Full Court of the Federal Court of Australia. This article interprets the dispute over Myriad Genetics in light of the scholarly work of Nobel Laureate Professor Joseph Stiglitz on inequality. Such work has significant explanatory power in the context of intellectual property and biotechnology. First, Stiglitz has contended that "societal inequality was a result not just of the laws of economics, but also of how we shape the economy — through politics, including through almost every aspect of our legal system". Stiglitz is concerned that "our intellectual property regime … contributes needlessly to the gravest form of inequality." He maintains: "The right to life should not be contingent on the ability to pay." Second, Stiglitz worries that "some of the most iniquitous aspects of inequality creation within our economic system are a result of 'rent-seeking': profits, and inequality, generated by manipulating social or political conditions to get a larger share of the economic pie, rather than increasing the size of that pie". He observes that "the most iniquitous aspect of this wealth appropriation arises when the wealth that goes to the top comes at the expense of the bottom." Third, Stiglitz comments: "When the legal regime governing intellectual property rights is designed poorly, it facilitates rent-seeking" and "the result is that there is actually less innovation and more inequality." He is concerned that intellectual property regimes "create monopoly rents that impede access to health both create inequality and hamper growth more generally." Finally, Stiglitz has recommended: "Government-financed research, foundations, and the prize system … are alternatives, with major advantages, and without the inequality-increasing disadvantages of the current intellectual property rights system.’" This article provides a critical analysis of the Australian litigation and debate surrounding Myriad Genetics’ patents in respect of genetic testing for BRCA1. First, it considers the ruling of Nicholas J in the Federal Court of Australia that Myriad Genetics’ patent was a manner of manufacture as it related to an artificially created state of affairs, and not mere products of nature. Second, it examines the policy debate over gene patents in Australia, and its relevance to the litigation involving Myriad Genetics. Third, it examines comparative law, and contrasts the ruling by Nicholas J in the Federal Court of Australia with developments in the United States, Canada, and the European Union. Fourth, this piece considers the reaction to the decision of Nicholas at first instance in Australia. Fifth, the article assesses the prospects of an appeal to the Full Federal Court of Australia over the Myriad Genetics’ patents. Finally, this article observes that, whatever happens in respect of litigation against Myriad Genetics, there remains controversy over Genetic Technologies Limited. The Melbourne firm has been aggressively licensing and enforcing its related patents on non-coding DNA and genomic mapping.

Characterization of novel microsatellite markers derived from Korean rose bitterling (Rhodeus uyekii) genomic library

Korean rose bitterling (Rhodeus uyekii) is a freshwater fish endemic to Korea. Natural populations of this species have experienced severe declines as a result of habitat fragmentation and water pollution. To conserve and restore R. uyekii, the genetic diversity of this species needs to be assessed at the population level. Eighteen novel polymorphic microsatellite loci for R. uyekii were developed using an enriched partial genomic library. Polymorphisms at these loci were studied in 150 individuals collected from three populations. The number of alleles at each locus ranged from 3 to 47 (mean = 17.1). Within the populations, the observed heterozygosity ranged from 0.032 to 1.000, expected heterozygosity from 0.082 to 0.967, and polymorphism information content from 0.078 to 0.950. Six loci showed significant deviation from Hardy-Weinberg equilibrium after Bonferroni’s correction, and no significant linkage disequilibrium was detected between most locus pairs, except in three cases. These highly informative microsatellite markers should be useful for genetic population structure analyses of R. uyekii.

Development of polymorphic microsatellite markers suitable for genetic linkage mapping of olive flounder Paralichthys olivaceus

Microsatellite markers are important for gene mapping and for marker-assisted selection. Sixty-five polymorphic microsatellite markers were developed with an enriched partial genomic library from olive flounder Paralichthys olivaceus an important commercial fish species in Korea. The variability of these markers was tested in 30 individuals collected from the East Sea (Korea). The number of alleles for each locus ranged from 2 to 33 (mean, 17.1). Observed and expected heterozygosity as well as polymorphism information content varied from 0.313 to 1.000 (mean, 0.788), from 0.323 to 0.977 (mean, 0.820), and from 0.277 to 0.960 (mean, 0.787), respectively. Nine loci showed significant deviation from the Hardy-Weinberg equilibrium after sequential Bonferroni correction. Analysis with MICROCHECKER suggested the presence of null alleles at five of these loci with estimated null allele frequencies of 0.126-0.285. These new microsatellite markers from genomic libraries will be useful for constructing a P. olivaceus linkage map.

Open content licensing of public sector information and the risk of tortious liability for Australian Governments

There has been an increasing interest by governments worldwide in the potential benefits of open access to public sector information (PSI). However, an important question remains: can a government incur tortious liability for incorrect information released online under an open content licence? This paper argues that the release of PSI online for free under an open content licence, specifically a Creative Commons licence, is within the bounds of an acceptable level of risk to government, especially where users are informed of the limitations of the data and appropriate information management policies and principles are in place to ensure accountability for data quality and accuracy.

Using mobile phones to improve offline access to online information : distributed content delivery

Mobile phones are now powerful and pervasive making them ideal information browsers. The Internet has revolutionized our lives and is a major knowledge sharing media. However, many mobile phone users cannot access the Internet (for financial or technical reasons) and so the mobile Internet has not been fully realized. We propose a novel content delivery network based on both a factual and speculative analysis of today’s technology and analyze its feasibility. If adopted people living in remote regions without Internet will be able to access essential (static) information with periodic updates.

Teen content creators : experiences of using information to learn

As access to networked digital communities increases, a growing number of teens participate in digital communities by creating and sharing a variety of content. The affordances of social media - ease of use, ubiquitous access, and communal nature - have made creating and sharing content an appealing process for teens. Teens primarily learn the practices of encountering and using information through social interaction and participation within digital communities. This article adopts the position that information literacy is the experience of using information to learn. It reports on an investigation into teens experiences in the United States, as they use information to learn how to create content and participate within the context of social media. Teens that participate in sharing art on sites such as DeiviantArt, website creation, blogging, and/or posting edited videos via YouTube and Vimeo, were interviewed. The interviews explored teens' information experiences within particular social and digital contexts. Teens discussed the information they used, how information was gathered and accessed, and explored the process of using that information to participate in the communities.

Information practices of teen content creators : the intersection of action and experiences a grounded theory study

What are the information practices of teen content creators? In the United States over two thirds of teens have participated in creating and sharing content in online communities that are developed for the purpose of allowing users to be producers of content. This study investigates how teens participating in digital participatory communities find and use information as well as how they experience the information. From this investigation emerged a model of their information practices while creating and sharing content such as film-making, visual art work, story telling, music, programming, and web site design in digital participatory communities. The research uses grounded theory methodology in a social constructionist framework to investigate the research problem: what are the information practices of teen content creators? Data was gathered through semi-structured interviews and observation of teen’s digital communities. Analysis occurred concurrently with data collection, and the principle of constant comparison was applied in analysis. As findings were constructed from the data, additional data was collected until a substantive theory was constructed and no new information emerged from data collection. The theory that was constructed from the data describes five information practices of teen content creators. The five information practices are learning community, negotiating aesthetic, negotiating control, negotiating capacity, and representing knowledge. In describing the five information practices there are three necessary descriptive components, the community of practice, the experiences of information and the information actions. The experiences of information include information as participation, inspiration, collaboration, process, and artifact. Information actions include activities that occur in the categories of gathering, thinking and creating. The experiences of information and information actions intersect in the information practices, which are situated within the specific community of practice, such as a digital participatory community. Finally, the information practices interact and build upon one another and this is represented in a graphic model and explanation.

GPX - Gardens Point XML Information Retrieval at INEX 2004

Traditional information retrieval (IR) systems respond to user queries with ranked lists of relevant documents. The separation of content and structure in XML documents allows individual XML elements to be selected in isolation. Thus, users expect XML-IR systems to return highly relevant results that are more precise than entire documents. In this paper we describe the implementation of a search engine for XML document collections. The system is keyword based and is built upon an XML inverted file system. We describe the approach that was adopted to meet the requirements of Content Only (CO) and Vague Content and Structure (VCAS) queries in INEX 2004.

Search engine content analysis

Search engines have forever changed the way people access and discover knowledge, allowing information about almost any subject to be quickly and easily retrieved within seconds. As increasingly more material becomes available electronically the influence of search engines on our lives will continue to grow. This presents the problem of how to find what information is contained in each search engine, what bias a search engine may have, and how to select the best search engine for a particular information need. This research introduces a new method, search engine content analysis, in order to solve the above problem. Search engine content analysis is a new development of traditional information retrieval field called collection selection, which deals with general information repositories. Current research in collection selection relies on full access to the collection or estimations of the size of the collections. Also collection descriptions are often represented as term occurrence statistics. An automatic ontology learning method is developed for the search engine content analysis, which trains an ontology with world knowledge of hundreds of different subjects in a multilevel taxonomy. This ontology is then mined to find important classification rules, and these rules are used to perform an extensive analysis of the content of the largest general purpose Internet search engines in use today. Instead of representing collections as a set of terms, which commonly occurs in collection selection, they are represented as a set of subjects, leading to a more robust representation of information and a decrease of synonymy. The ontology based method was compared with ReDDE (Relevant Document Distribution Estimation method for resource selection) using the standard R-value metric, with encouraging results. ReDDE is the current state of the art collection selection method which relies on collection size estimation. The method was also used to analyse the content of the most popular search engines in use today, including Google and Yahoo. In addition several specialist search engines such as Pubmed and the U.S. Department of Agriculture were analysed. In conclusion, this research shows that the ontology based method mitigates the need for collection size estimation.

Peer to peer English/Chinese cross-language information retrieval

Peer to peer systems have been widely used in the internet. However, most of the peer to peer information systems are still missing some of the important features, for example cross-language IR (Information Retrieval) and collection selection / fusion features. Cross-language IR is the state-of-art research area in IR research community. It has not been used in any real world IR systems yet. Cross-language IR has the ability to issue a query in one language and receive documents in other languages. In typical peer to peer environment, users are from multiple countries. Their collections are definitely in multiple languages. Cross-language IR can help users to find documents more easily. E.g. many Chinese researchers will search research papers in both Chinese and English. With Cross-language IR, they can do one query in Chinese and get documents in two languages. The Out Of Vocabulary (OOV) problem is one of the key research areas in crosslanguage information retrieval. In recent years, web mining was shown to be one of the effective approaches to solving this problem. However, how to extract Multiword Lexical Units (MLUs) from the web content and how to select the correct translations from the extracted candidate MLUs are still two difficult problems in web mining based automated translation approaches. Discovering resource descriptions and merging results obtained from remote search engines are two key issues in distributed information retrieval studies. In uncooperative environments, query-based sampling and normalized-score based merging strategies are well-known approaches to solve such problems. However, such approaches only consider the content of the remote database but do not consider the retrieval performance of the remote search engine. This thesis presents research on building a peer to peer IR system with crosslanguage IR and advance collection profiling technique for fusion features. Particularly, this thesis first presents a new Chinese term measurement and new Chinese MLU extraction process that works well on small corpora. An approach to selection of MLUs in a more accurate manner is also presented. After that, this thesis proposes a collection profiling strategy which can discover not only collection content but also retrieval performance of the remote search engine. Based on collection profiling, a web-based query classification method and two collection fusion approaches are developed and presented in this thesis. Our experiments show that the proposed strategies are effective in merging results in uncooperative peer to peer environments. Here, an uncooperative environment is defined as each peer in the system is autonomous. Peer like to share documents but they do not share collection statistics. This environment is a typical peer to peer IR environment. Finally, all those approaches are grouped together to build up a secure peer to peer multilingual IR system that cooperates through X.509 and email system.

Women's participation in the Australian Digital Content Industry : initial case study findings

An exploratory case study which seeks to understand better the problem of low participation rates of women in Information Communication Technology (ICT) is currently being conducted in Queensland, Australia. Contextualised within the Digital Content Industry (DCI) multimedia and games production sectors, the emphasis is on women employed as interactive content creators rather than as users of the technologies. Initial findings provide rich descriptive insights into the perceptions and experiences of female DCI professionals. Influences on participation such as: existing gender ratios, gender and occupational stereotypes, access into the industry and future parental responsibilities have emerged from the data. Bandura’s (1999) Social Cognitive Theory (SCT) is used as a “scaffold” (Walsham, 1995:76) to guide data analysis and assist analytic generalisation of the case study findings. We propose that the lens of human agency and theories such as SCT assist in explaining how influences are manifested and affect women’s agency and ultimately participation in the DCI. The Sphere of Influence conceptual model (Geneve et al, 2008), which emerges from the data and underpinning theory, is proposed as a heuristic framework to further explore influences on women’s participation in the DCI industry context.

Older patients request more information : a survey of use of written patient education materials in general practice

Objectives: To determine GPs' reported use of written education materials with older patients and older patients' reported receipt of these materials. To determine GPs' and older patients' perceptions of written materials.---------- Method: Using self-report questionnaires, two populations were surveyed; a randomised sample of 50 GPs (29 males and 21 females) practising in Brisbane's southern suburbs and a convenience sample of 188 older community-dwelling people (aged over 64 years).----------- Results: All GPs reported using written materials with patients, although 28% had not given any to the Last 10 patients. This increased to 46% when patients were older. Twenty percent of patients wanted more written information from their GP, while some GPs believed that older patients preferred verbal information and gave out written information only when they perceived patient interest. All GPs reported giving written materials at the time of consultation and over two thirds discussed the content with patients. Just over 50% of patients reported receiving written information from GPs in the Last six months and only hall of these again discussed it directly with their GP. Overall, patients were more positive than GPs about the value of written education materials.---------- Conclusions: Older patients' desire for written information may be better met if they are more assertive in requesting this of GPs and GPs may better serve their patients' needs if they make written information more readily available to them. Better access to materials and more financial incentives to give them out might also increase GPs' use of written materials.

From Prosumer to Produser: Understanding User-Led Content Creation

Alvin Toffler’s image of the prosumer (1970, 1980, 1990) continues to influence in a significant way our understanding of the user-led, collaborative processes of content creation which are today labelled “social media” or “Web 2.0”. A closer look at Toffler’s own description of his prosumer model reveals, however, that it remains firmly grounded in the mass media age: the prosumer is clearly not the self-motivated creative originator and developer of new content which can today be observed in projects ranging from open source software through Wikipedia to Second Life, but simply a particularly well-informed, and therefore both particularly critical and particularly active, consumer. The highly specialised, high end consumers which exist in areas such as hi-fi or car culture are far more representative of the ideal prosumer than the participants in non-commercial (or as yet non-commercial) collaborative projects. And to expect Toffler’s 1970s model of the prosumer to describe these 21st-century phenomena was always an unrealistic expectation, of course. To describe the creative and collaborative participation which today characterises user-led projects such as Wikipedia, terms such as ‘production’ and ‘consumption’ are no longer particularly useful – even in laboured constructions such as ‘commons-based peer-production’ (Benkler 2006) or ‘p2p production’ (Bauwens 2005). In the user communities participating in such forms of content creation, roles as consumers and users have long begun to be inextricably interwoven with those as producer and creator: users are always already also able to be producers of the shared information collection, regardless of whether they are aware of that fact – they have taken on a new, hybrid role which may be best described as that of a produser (Bruns 2008). Projects which build on such produsage can be found in areas from open source software development through citizen journalism to Wikipedia, and beyond this also in multi-user online computer games, filesharing, and even in communities collaborating on the design of material goods. While addressing a range of different challenges, they nonetheless build on a small number of universal key principles. This paper documents these principles and indicates the possible implications of this transition from production and prosumption to produsage.

A review of the conversations and their content

This is the 2nd of a series of discussion papers (Table 1) around the pedagogy of supervision in the technology disciplines. The papers form part of an Australian Learning and Teaching Council Fellowship program conducted by ALTC Associate Fellow, Professor Christine Bruce, Queensland University of Technology.