Using digital rights management for securing data in a medical research environment

We propose a digital rights management approach for sharing electronic health records in a health research facility and argue advantages of the approach. We also give an outline of the system under development and our implementation of the security features and discuss challenges that we faced and future directions.

Children and consent to medical treatment

This chapter deals with the law concerning children and consent to medical treatment. Where a child under the age of 18 requires medical treatment, issues arise as to who may lawfully consent to the treatment and under what circumstances. Depending on the circumstances, consent may be given by the child’s parent or guardian; the child; or a court. The chapter provides a thorough treatment of Australian law about these issues and circumstances.

Paediatric spinal deformity research at the Mater Children's Hospital, Brisbane, Australia.

The Paediatric Spine Research group was formed in 2002 to perform high quality research into the prevention and management of spinal deformity, with an emphasis on scoliosis. The group has successfully built collaborative bridges between the scientific and research expertise at QUT, and the clinical skills and experience of the spinal orthopaedic surgeons at the Mater Children’s Hospital in Brisbane. Clinical and biomechanical research is now possible as a result of the development of detailed databases of patients who have innovative and unique surgical interventions for spinal deformity such as thoracoscopic scoliosis correction, thoracoscopic staple insertion for juvenile idiopathic scoliosis and minimally invasive growing rods. The Mater in Brisbane provides these unique datasets of spinal deformity surgery patients, whose procedures are not being performed anywhere else in the Southern Hemisphere. The most detailed is a database of thoracoscopic scoliosis correction surgery which now contains 180 patients with electronic collections of X-Rays, photographs and patient questionnaires. With ethics approval, a subset of these patients has had CT scans, and a further subset have had MRI scans with and without a compressive load to simulate the erect standing position. This database has to date contributed to 17 international refereed journal papers, a further 7 journal papers either under review or in final preparation, 53 national conference presentations and 35 international conference presentations. Major findings from selected journal publications will be presented. It is anticipated that as the surgical databases grow they will continue to provide invaluable clinical data which will feed into clinically relevant projects driven by both medical and engineering researchers whose findings will benefit spinal deformity patients and scientific knowledge worldwide.

Analysis of the effect of negation on information retrieval of medical data

Most information retrieval (IR) models treat the presence of a term within a document as an indication that the document is somehow "about" that term, they do not take into account when a term might be explicitly negated. Medical data, by its nature, contains a high frequency of negated terms - e.g. "review of systems showed no chest pain or shortness of breath". This papers presents a study of the effects of negation on information retrieval. We present a number of experiments to determine whether negation has a significant negative affect on IR performance and whether language models that take negation into account might improve performance. We use a collection of real medical records as our test corpus. Our findings are that negation has some affect on system performance, but this will likely be confined to domains such as medical data where negation is prevalent.

Levels of awareness of professional ethics used as a sensitizing method in project-based learning

There is a need for educational frameworks for computer ethics education. This discussion paper presents an approach to developing students’ moral sensitivity, an awareness of morally relevant issues, in project-based learning (PjBL). The proposed approach is based on a study of IT professionals’ levels of awareness of ethics. These levels are labelled My world, The corporate world, A shared world, The client’s world and The wider world. We give recommendations for how instructors may stimulate students’ thinking with the levels and how the levels may be taken into account in managing a project course and in an IS department. Limitations of the recommendations are assessed and issues for discussion are raised.

The pitfalls of publicizing ethics research

What happens to our research once it hits the popular media? Do marketers know how to promote our research in a way that is understandable and complete, while still capturing an audience? This case study follows the dissemination of the results of a consumer ethics study via a single press release, along with the resulting media coverage, interviews and audience comments. Perhaps in their quest for a touch of controversy, the story picked up by the popular press was not the one intended by the authors. If getting the public story right is important, marketing academics need to spend as much time carefully crafting their press releases as they do writing journal manuscripts – they may not be able to rely on the ethics of media sub-editors who choose controversial headlines.

The international search for ethics norms : which consumer behaviors do consumers consider (un)acceptable?

Purpose: Businesses cannot rely on their customers to always do the right thing. To help researchers and service providers better understand the dark (and light) side of customer behavior, this study aims to aggregate and investigate perceptions of consumer ethics from young consumers on five continents. The study seeks to present a profile of consumer behavioral norms, how ethical inclinations have evolved over time, and country differences. ---------- Design/methodology/approach: Data were collected from ten countries across five continents between 1997 and 2007. A self-administered questionnaire containing 14 consumer scenarios asked respondents to rate acceptability of questionable consumer actions. ---------- Findings: Overall, consumers found four of the 14 questionable consumer actions acceptable. Illegal activities were mostly viewed as unethical, while some legal actions that were against company policy were viewed less harshly. Differences across continents emerged, with Europeans being the least critical, while Asians and Africans shared duties as most critical of consumer actions. Over time, consumers have become less tolerant of questionable behaviors. ---------- Practical implications: Service providers should use the findings of this study to better understand the service customer. Knowing what customers in general believe is ethical or unethical can help service designers focus on the aspects of the technology or design most vulnerable to customer deviance. ---------- Multinationals already know they must adapt their business practices to the market in which they are operating, but they must also adapt their expectations as to the behavior of the corresponding consumer base. Originality/value: This investigation into consumer ethics helps businesses understand what their customer base believes is the right thing in their role as customer. This is a large-scale study of consumer ethics including 3,739 respondents on five continents offering an evolving view of the ethical inclinations of young consumers.

Uncertainties that matter : risk, response-ability, ethics and the moment of exchange in Live Art

This article examines the moment of exchange between artist, audience and culture in Live Art. Drawing on historical and contemporary examples, including examples from the Exist in 08 Live Art Event in Brisbane, Australia, in October 2008, it argues that Live Art - be it body art, activist art, site-specific performance, or other sorts of performative intervention in the public sphere - is characterised by a common set of claims about activating audiences, asking them to reflect on cultural norms challenged in the work. Live Art presents risky actions, in a context that blurs the boundaries between art and reality, to position audients as ‘witnesses’ who are personally implicated in, and responsible for, the actions unfolding before them. This article problematises assumptions about the way the uncertainties embedded in the Live Art encounter contribute to its deconstructive agenda. It uses the ethical theory of Emmanuel Levinas, Hans-Thies Lehmann and Dwight Conquergood to examine the mechanics of reductive, culturally-recuperative readings that can limit the efficacy of the Live Art encounter. It argues that, though ‘witnessing’ in Live Art depends on a relation to the real - real people, taking real risks, in real places - if it fails to foreground theatrical frame it is difficult for audients to develop the dual consciousness of the content, and their complicity in that content, that is the starting point for reflexivity, and response-ability, in the ethical encounter.

Review of Dr. Richard Shapcott's International Ethics : A Critical Introduction. 2010. London: Polity Press. ISBN-13: 978-0-7456-3142-4.

This work by Richard Shapcott is, as the title provides, an introduction to international ethics. By taking a quick glance at the table of contents (see Figure 1) we see that he has systematically divided this particular discourse into its normative areas of concern (in other words its major areas of argument or research). When reading, we also see that a great deal of work has gone into the publication because the narrative is flowing, the arguments continuous, and because the tone of the work maintained its critical position throughout.

An interview with Dr. Richard Shapcott : the international ethics of 'Basic Democracy'

Dr. Richard Shapcott is the senior lecturer in International Relations at the University of Queensland. His areas of interest in research concern international ethics, cosmopolitan political theory and cultural diversity. He is the author of the recently published book titled International Ethics: A Critical Introduction; and several other pieces, such as, “Anti-Cosmopolitanism, the Cosmopolitan Harm Principle and Global Dialogue,” in Michalis’ and Petito’s book, Civilizational Dialogue and World Order. He’s also the author of “Dialogue and International Ethics: Religion, Cultural Diversity and Universalism, in Patrick Hayden’s, The Ashgate Research Companion to Ethics and International Relations.

Research Ethics and Creative Arts Hypothetical

The merits of a research project are commonly framed in terms of perceived benefits with respect to knowledge production, wellbeing, the social good, and so on. Such measures can, however, be at odds with certain types of creative practice, which may be perceived as frivolous, unsettling, or shocking. Moreover, creative practice research methodologies commonly eschew more traditional research conventions. In exploring these tensions, this live performance event (including a DVD component) adapted key dramatic principles developed in Geoffrey Robertson's groundbreaking Hypotheticals. The event was presented for an audience of staff and students at QUT's Creative Industries Faculty in July 2010. It confirmed Dr Angela Romano's contention that: “Part of the ethical clearance process for practice-led researchers will be to find a language to explain the methodology, significance, merit and integrity of their research to people outside their field of practice.” (Angela Romano, QUT Creative Industries) “Part of the ethical clearance process for practice-led researchers will be to find a language to explain the methodology, significance, merit and integrity of their research to people outside their field of practice.”

Anticipated behaviours of emergency prehospital medical care providers during an influenza pandemic

Introduction: Emergency prehospital medical care providers are frontline health workers during emergencies. However, little is known about their attitudes, perceptions, and likely behaviors during emergency conditions. Understanding these attitudes and behaviors is crucial to mitigating the psychological and operational effects of biohazard events such as pandemic influenza, and will support the business continuity of essential prehospital services. ----- ----- Problem: This study was designed to investigate the association between knowledge and attitudes regarding avian influenza on likely behavioral responses of Australian emergency prehospital medical care providers in pandemic conditions. ----- ----- Methods: Using a reply-paid postal questionnaire, the knowledge and attitudes of a national, stratified, random sample of the Australian emergency prehospital medical care workforce in relation to pandemic influenza were investigated. In addition to knowledge and attitudes, there were five measures of anticipated behavior during pandemic conditions: (1) preparedness to wear personal protective equipment (PPE); (2) preparedness to change role; (3) willingness to work; and likely refusal to work with colleagues who were exposed to (4) known and (5) suspected influenza. Multiple logistic regression models were constructed to determine the independent predictors of each of the anticipated behaviors, while controlling for other relevant variables. ----- ----- Results: Almost half (43%) of the 725 emergency prehospital medical care personnel who responded to the survey indicated that they would be unwilling to work during pandemic conditions; one-quarter indicated that they would not be prepared to work in PPE; and one-third would refuse to work with a colleague exposed to a known case of pandemic human influenza. Willingness to work during a pandemic (OR = 1.41; 95% CI = 1.0–1.9), and willingness to change roles (OR = 1.44; 95% CI = 1.04–2.0) significantly increased with adequate knowledge about infectious agents generally. Generally, refusal to work with exposed (OR = 0.48; 95% CI = 0.3–0.7) or potentially exposed (OR = 0.43; 95% CI = 0.3–0.6) colleagues significantly decreased with adequate knowledge about infectious agents. Confidence in the employer’s capacity to respond appropriately to a pandemic significantly increased employee willingness to work (OR = 2.83; 95% CI = 1.9–4.1); willingness to change roles during a pandemic (OR = 1.52; 95% CI = 1.1–2.1); preparedness to wear PPE (OR = 1.68; 95% CI = 1.1–2.5); and significantly decreased the likelihood of refusing to work with colleagues exposed to (suspected) influenza (OR = 0.59; 95% CI = 0.4–0.9). ----- ----- Conclusions:These findings indicate that education and training alone will not adequately prepare the emergency prehospital medical workforce for a pandemic. It is crucial to address the concerns of ambulance personnel and the perceived concerns of their relationship with partners in order to maintain an effective prehospital emergency medical care service during pandemic conditions.

Attitudes to living and working in pandemic conditions among emergency prehospital medical care personnel

Introduction: Little is known about the risk perceptions and attitudes of healthcare personnel, especially of emergency prehospital medical care personnel, regarding the possibility of an outbreak or epidemic event. Problem: This study was designed to investigate pre-event knowledge and attitudes of a national sample of the emergency prehospital medical care providers in relation to a potential human influenza pandemic, and to determine predictors of these attitudes. Methods: Surveys were distributed to a random, cross-sectional sample of 20% of the Australian emergency prehospital medical care workforce (n = 2,929), stratified by the nine services operating in Australia, as well as by gender and location. The surveys included: (1) demographic information; (2) knowledge of influenza; and (3) attitudes and perceptions related to working during influenza pandemic conditions. Multiple logistic regression models were constructed to identify predictors of pandemic-related risk perceptions. Results: Among the 725 Australian emergency prehospital medical care personnel who responded, 89% were very anxious about working during pandemic conditions, and 85% perceived a high personal risk associated with working in such conditions. In general, respondents demonstrated poor knowledge in relation to avian influenza, influenza generally, and infection transmission methods. Less than 5% of respondents perceived that they had adequate education/training about avian influenza. Logistic regression analyses indicate that, in managing the attitudes and risk perceptions of emergency prehospital medical care staff, particular attention should be directed toward the paid, male workforce (as opposed to volunteers), and on personnel whose relationship partners do not work in the health industry. Conclusions: These results highlight the potentially crucial role of education and training in pandemic preparedness. Organizations that provide emergency prehospital medical care must address this apparent lack of knowledge regarding infection transmission, and procedures for protection and decontamination. Careful management of the perceptions of emergency prehospital medical care personnel during a pandemic is likely to be critical in achieving an effective response to a widespread outbreak of infectious disease.