Privacy as personal resistance: exploring legal narratology and the need for a legal architecture for personal privacy rights

Different cultures produce different privacies – both architecturally and legally speaking – as well as in their different legal architectures. The ‘Simms principle’ can be harnessed to produce semi-constitutional privacy protection through statute; building on the work already done in ‘bringing rights home’ through the Human Rights Act 1998. This article attempts to set out a notion of semi-entrenched legal rights, which will help to better portray the case for architectural, constitutional privacy, following an examination of the problems with a legal narrative for privacy rights as they currently exist. I will use parallel ideas from the works of W.B. Yeats and Costas Douzinas to explore and critique these assumptions and arguments. The ultimate object of this piece is an argument for the creation of a legal instrument, namely an Act of Parliament, in the United Kingdom; the purpose of which is to protect certain notions of personal privacy from politically-motivated erosion and intrusion

Semantic privacy-preserving framework for electronic health record linkage

The combination of digitized health information and web-based technologies offers many possibilities for data analysis and business intelligence. In the healthcare and biomedical research domain, applications depending on electronic health records (EHRs) identify privacy preservation as a major concern. Existing solutions cannot always satisfy the evolving research demands such as linking patient records across organizational boundaries due to the potential for patient re-identification. In this work, we show how semantic methods can be applied to support the formulation and enforcement of access control policy whilst ensuring that privacy leakage can be detected and prevented. The work is illustrated through a case study associated with the Australasian Diabetes Data Network (ADDN – www.addn.org.au), the national paediatric type-1 diabetes data registry, and the Australian Urban Research Infrastructure Network (AURIN – www.aurin.org.au) platform that supports Australia-wide access to urban and built environment data sets. We demonstrate that through extending the eXtensible Access Control Markup Language (XACML) with semantic capabilities, finer-grained access control encompassing data risk disclosure mechanisms can be supported. We discuss the contributions that can be made using this approach to socio-economic development and political management within business systems, and especially those situations where secure data access and data linkage is required

Open Data, Grey Data, and Stewardship: Universities at the Privacy Frontier

As universities recognize the inherent value in the data they collect and hold, they encounter unforeseen challenges in stewarding those data in ways that balance accountability, transparency, and protection of privacy, academic freedom, and intellectual property. Two parallel developments in academic data collection are converging: (1) open access requirements, whereby researchers must provide access to their data as a condition of obtaining grant funding or publishing results in journals; and (2) the vast accumulation of 'grey data' about individuals in their daily activities of research, teaching, learning, services, and administration. The boundaries between research and grey data are blurring, making it more difficult to assess the risks and responsibilities associated with any data collection. Many sets of data, both research and grey, fall outside privacy regulations such as HIPAA, FERPA, and PII. Universities are exploiting these data for research, learning analytics, faculty evaluation, strategic decisions, and other sensitive matters. Commercial entities are besieging universities with requests for access to data or for partnerships to mine them. The privacy frontier facing research universities spans open access practices, uses and misuses of data, public records requests, cyber risk, and curating data for privacy protection. This paper explores the competing values inherent in data stewardship and makes recommendations for practice, drawing on the pioneering work of the University of California in privacy and information security, data governance, and cyber risk.Comment: Final published version, Sept 30, 201

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.FP7/2007-2013/27008

Medical data processing and analysis for remote health and activities monitoring

Recent developments in sensor technology, wearable computing, Internet of Things (IoT), and wireless communication have given rise to research in ubiquitous healthcare and remote monitoring of human\u2019s health and activities. Health monitoring systems involve processing and analysis of data retrieved from smartphones, smart watches, smart bracelets, as well as various sensors and wearable devices. Such systems enable continuous monitoring of patients psychological and health conditions by sensing and transmitting measurements such as heart rate, electrocardiogram, body temperature, respiratory rate, chest sounds, or blood pressure. Pervasive healthcare, as a relevant application domain in this context, aims at revolutionizing the delivery of medical services through a medical assistive environment and facilitates the independent living of patients. In this chapter, we discuss (1) data collection, fusion, ownership and privacy issues; (2) models, technologies and solutions for medical data processing and analysis; (3) big medical data analytics for remote health monitoring; (4) research challenges and opportunities in medical data analytics; (5) examples of case studies and practical solutions

Preservation of DNA Privacy During the Large Scale Detection of COVID-19

As humanity struggles to contain the global COVID-19 pandemic, privacy concerns are emerging regarding confinement, tracing and testing. The scientific debate concerning privacy of the COVID-19 tracing efforts has been intense, especially focusing on the choice between centralised and decentralised tracing apps. The privacy concerns regarding COVID-19 testing, however, have not received as much attention even though the privacy at stake is arguably even higher. COVID-19 tests require the collection of samples. Those samples possibly contain viral material but inevitably also human DNA. Patient DNA is not necessary for the test but it is technically impossible to avoid collecting it. The unlawful preservation, or misuse, of such samples at a massive scale may hence disclose patient DNA information with far-reaching privacy consequences. Inspired by the cryptographic concept of "Indistinguishability under Chosen Plaintext Attack", this paper poses the blueprint of novel types of tests allowing to detect viral presence without leaving persisting traces of the patient's DNA. Authors are listed in alphabetical order.Comment: 10 pages, 1 figur