706 resultados para Ethical research


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This paper focuses on Australian texts with Asian representations, which will be discussed in terms of Ethical Intelligence (Weinstein, 2011) explored through drama. This approach aligns with the architecture of the Australian Curriculum: English (AC:E, v5, 2013); in particular the general capabilities of 'ethical understanding' and 'intercultural understandings.' It also addresses one aspect of the Cross Curriculum Priorities which is to include texts about peoples from Asia. The selected texts not only show the struggles undergone by the authors and protagonists, but also the positive contributions that diverse writers from Asian and Middle Eastern countries have made to Australia.

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Some children adopted under the now discredited period of closed adoption were never told of their adoptive status until it was revealed to them in adulthood. Yet to date, this ‘late-discovery’ experience has received little research attention. Now a new generation of ‘late discoverers’ is emerging as a result of (heterosexual couple) donor insemination (DI) practices. This study of 25 late-discovery participants of either adoptive or (heterosexual couple) DI offspring status reveals ethical concerns particular to the lateness of discovery. Most of the participants were Australian, with the remainder from the UK, USA and Canada. All were asked to give an ‘open’ account of their experience, with four themes or suggestions provided on request. These accounts were added to those available in relevant publications. The analysis employed a hermeneutic phenomenological methodology and all accounts were analysed using an ethical perspective developed by Walker (2006, 2007). The main themes that emerged were: disrupted personal autonomy, betrayal of deep levels of trust and feelings of injustice and diminished self-worth. The lack of recognition of concerns particular to late discovery has resulted in late discoverers (i) feeling unable to regain a sense of personal control, (ii) significantly disrupted relationships with those closest to them and others, including community and institutions, and (iii) feelings of diminished value and self-worth.

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The experiences of people affected by cancer are at the very heart of nursing research efforts. Because much of our work is focused on understanding how to improve experiences and outcomes for people with cancer, it is easy for us to believe that our research is inherently "person centered" and thus collaborative. Let's reflect on what truly collaborative approaches to cancer nursing research could be like, and how we measure up to such goals. Collaboration between people affected by cancer (consumers) and nurses in research is much more than providing a voice for individuals as participants in a research study. Today, research governing bodies in many countries require us to seek a different kind of consumer participation, where consumers and researchers work in partnership with one another to shape decisions about research priorities, policies, and practices.1 Most granting bodies now require explanations of how consumer and community participation will occur within a study. Ethical imperatives and the concept of patient advocacy also require that we give more considered attention to what is meant by consumer involvement.2 Consumers provide perspective on what will be relevant, acceptable, feasible, and sensitive research, having lived the experience of cancer. As a result, they offer practical insights that can ensure the successful conduct and better outcomes from research. Some granting bodies now even allocate a proportion of final score or assign a "public value" weighting for a grant, to recognize the importance of consumer involvement and reflect the quality of patient involvement in all stages of the research process.3

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In this paper we introduce a novel design for a translational medical research ecosystem. Translational medical research is an emerging field of work, which aims to bridge the gap between basic medical science research and clinical research/patient care. We analyze the key challenges of digital ecosystems for translational research, based on real world scenarios posed by the Lab for Translational Research at the Harvard Medical School and the Genomics Research Centre of the Griffith University, and show how traditional IT approaches fail to fulfill these challenges. We then introduce our design for a translational research ecosystem. Several key contributions are made: A novel approach to managing ad-hoc research ecosystems is introduced; a new security approach for translational research is proposed which allows each participating site to retain control over its data and define its own policies to ensure legal and ethical compliance; and a design for a novel interactive access control framework which allows users to easily share data, while adhering to their organization's policies is presented.

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This article explores the strengths and limitations of settler colonial theory (SCT) as a tool for non-Indigenous scholars seeking to disturb rather than re-enact colonial privilege. Based on an examination of recent Australian academic debates on settler colonialism and the Northern Territory intervention, we argue that SCT is useful in dehistoricizing colonialism, usually presented as an unfortunate but already transcended national past, and in revealing the intimate connections between settler emotions, knowledges, institutions and policies. Most importantly, it makes settler investments visible to settlers, in terms we understand and find hard to escape. However, as others have noted, SCT seems unable to transcend itself, in the sense that it posits a structural inevitability to the settler colonial relationship. We suggest that this structuralism can be mobilized by settler scholars in ways that delegitimize Indigenous resistance and reinforce violent colonial relationships. But while settlers come to stay and to erase Indigenous political existence, this does not mean that these intentions will be realized or must remain fixed. Non-Indigenous scholars should challenge the politically convenient conflation of settler desires and reality, and of the political present and the future. This article highlights these issues in order to begin to unlock the transformative potential of SCT, engaging settler scholars as political actors and arguing that this approach has the potential to facilitate conversations and alliances with Indigenous people. It is precisely by using the strengths of SCT that we can challenge its limitations; the theory itself places ethical demands on us as settlers, including the demand that we actively refuse its potential to re-empower our own academic voices and to marginalize Indigenous resistance.

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Managing public sector projects in Malaysia is a unique challenge. This is because of the ethical issues involved during the project procurement process. These ethical issues need attention because they will have an impact on the quality, cost and time of the project itself. The ethical issues here include conflict of interest, bid shopping, collusive tendering, bid cutting, corruption and the payment game. In 2006, 17.3% of 417 Malaysian government contract projects were considered sick due to contractors' performances that failed to conduct the project according to the project plan. Some of the sick projects from these statistics are due to the ethical issues involved. These construction projects have low quality due to the selection of the contractors, done unethically due to personal relationships instead of professional qualifications. That is why it is important to govern the project procurement processes to ensure the accountability and transparency of the decision making process to ensure that these ethical issues can be avoided. Extensive research has been conducted on the ethical issues in the tendering process or the award phase of project management. There is a lack of studies looking at the role of clients, including the government client, in relation to unethical practice in project procurement in the public sector. It is important to understand that ethical issues not only involve the contractors and suppliers but also the clients. Even though there are codes of ethics in the public sectors, ethical issues still arise. Therefore, this research develops a project governance framework (PGEDM) for ethical decision making in the Malaysian public sectors. This framework combines the ethical decision making process together with the project governance principals in guiding the public sectors with ethical decision making in project procurement. A triangulation of questionnaire survey and Delphi study was employed in this research to collect required qualitative and quantitative data. A questionnaire survey was conducted among the public officials (the practitioners) who are currently working in the procurement area in the Malaysian public sectors, in identifying the ethical behaviours and factors influencing further ethical behaviour to occur. A Delphi study was also conducted with the assistance of a panel of experts consisting of practitioners that have expertise in the area of project governance and project procurement as well as academician, which further considered the relationship and the influence of the criteria and indicators of ethical decision making (EDM) and project governance (project criteria, organisational culture, contract award criteria, individual criteria, client's requirements, government procedures and professional ethics). Through the identification and integration of the factors and EDM criteria as well as the project governance criteria and EDM steps for ethical issues, a PGEDM framework was developed to promote, and drive consistent decision outcome in project procurement in the public sector. The framework contributes significantly to ethical decision making in the project procurement process. These findings not only give benefit to the people involved in project procurement but also to the public officials in guiding them to be more accountable in handling ethical issues in the future and to have a more transparent decision making process.

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Whilst there is an excellent and growing body of literature around female criminality underpinned by feminist methodologies, the nitty gritty of the methodological journey is nowhere as well detailed as it is in the context of the Higher Degree Research (HDR) thesis. Thus the purpose of this paper is threefold: i) to explore a range of feminist methodologies underpinning 20 Australian HDR theses focussing on female criminality; ii) to identify and map the governance/ethics tensions experienced by these researchers whilst undertaking high risk research in the area of female offending; and iii) to document strategies drawn from negotiations, resolutions and outcomes to a range of gate-keeping issues. By exploring the strategies used by these researchers, this paper aims to: promote discussion on feminist methodologies; highlight pathways that may be created when negotiating the challenging process of accessing data pertinent to this relatively understudied area; contribute to a community of practice; and provide useful insights into what Mason & Stubbs (2010:16) refer to as “the open and honest reflexivity through the research process by describing the assumptions, and hiccups” for future researchers navigating governance landscapes.

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Building distributed leadership for effective supervision of creative practice higher research degrees is an Office for Learning and Teaching (OLT) funded project, conducted in partnership between Queensland University of Technology, The University of Melbourne, Auckland University of Technology, University of New South Wales and University of Western Sydney. The project was initiated to develop a cooperative approach to establishing an understanding of the contextual frameworks of the emergent field of creative practice higher degrees by research (HDRs); capturing early insights of administrators and supervisors; gathering exemplars of good practices; and establishing an in-common understanding of effective approaches to supervision. To this end, the project has produced: • A literature review, to provide a research foundation for creative practice higher research degree supervision (Chapter 3). • A contextual review of disciplinary frameworks for HDR programs, produced through surveys of postgraduate research administrators (Section 4.1), and an analysis of institutional materials and academic development programs for supervisors (Section 4.2). • A National Symposium, Effective Supervision of Creative Arts Research Degrees (ESCARD), at QUT in Brisbane in February 2013, with 62 delegates from 20 Australasian Universities, at which project findings were disseminated, and delegates presented case studies and position papers, and participated in discussions on key issues for supervisors (Appendix 1). • Resources, including a booklet for supervisors: 12 Principles for the Effective Supervision of Creative Practice Higher Research Degrees, which encapsulates attitudes, insights and good practices of experienced and new supervisors. It was produced through a content analysis of interviews with twenty-five supervisors in creative disciplines (visual and performing arts, music, new media, creative writing and design) (Printed booklet, PDF, Appendix 3). • A project website to disseminate project outcomes , which holds project findings, relevant references, and a repository of case studies and position papers by supervisors and program administrators. • A call for papers for a special issue ‘Supervising Practice: Perspectives on the Supervision of Creative Practice Research Higher Degrees’ of ACCESS Journal: Critical Perspectives on Communication, Cultural & Policy Studies (ERA ranked A quality) in 2014 (Appendix 2). • A community of supervisory practice initiated through project partnerships, a national symposium where supervisors from across Australasia met in dialogue for the first time, resource sharing, and joint publishing opportunities. • A set of recommendations for supervision capacity building and academic development, produced through the triangulation of literature and contextual reviews, analysis of institutional frameworks, interviews with supervisors and national dialogues. It is anticipated that the project’s outcomes will support experienced and new supervisors in this emergent field, and so benefit HDR students, and will enable creative disciplines to build supervision capacity, and so to accommodate growth in postgraduate enrolments. Funded as a pilot project, the project set out to establish a robust research base to provide a foundation for future work involving sharing good practices, resource building, and designing effective approaches to academic development for supervisors. Recommendations that were produced out of this project include the need to extend beyond generic, formal training for supervisors to academic development that harnesses and extends distributed leadership; focuses on local, disciplinary contexts; has a strong emphasis on case studies; provides diverse resources; and facilitates dialogue between supervisors. Recommendations also include developing frameworks for mentoring new supervisors and building a national network to facilitate cross-institutional discourse, disseminate good practices, and share insights into the management of risk factors, ethical issues, and preparing candidates for examination. As a pilot investigation, the outcomes of this project lay the ground for this future work.

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Much of the existing empirical research on journalism focuses largely on hard-news journalism, at the expense of its less traditional forms, particularly the soft-news areas of lifestyle and entertainment journalism. In focussing on one particular area of lifestyle journalism – the reporting of travel stories – this paper argues for renewed scholarly efforts in this increasingly important field. Travel journalism’s location at the intersection between information and entertainment, journalism and advertising, as well as its increasingly significant role in the representation of foreign cultures makes it a significant site for scholarly research. By reviewing existing research about travel journalism and examining in detail the special exigencies that constrain it, the article proposes a number of dimensions for future research into the production practices of travel journalism. These dimensions include travel journalism’s role in mediating foreign cultures, its market orientation, motivational aspects and its ethical standards.

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Introduction Delirium research in palliative care, particularly in the dying phase, is possible but is frequently met with ethical and methodological challenges. This paper describes the challenges faced in a previous delirium screening study. Methods Within 72 hours of admission to an acute inpatient specialist palliative care unit one hundred consecutive patients over 18 years of age with advanced cancer were invited to be screened for delirium using validated screening tools. Results Of the 100 consecutive admissions 49 patients were unable to participate including seven who did not meet the inclusion criteria and nine (six families and three patients) who withheld consent. The remaining 33 patients were more unwell and closer to death than those who were recruited. Reasons for non- participation included being too unwell (ten), unresponsive (nine), died (two) or discharged (three) before recruitment and exceeding the 72hour time limit (nine). Conclusion Gate keeping and physical condition of patients were the main obstacles to recruitment and is consistent with barriers faced in previous studies involving palliative care and dying patients. While it is possible and necessary to conduct studies in palliative care, including the terminal phase, as reflective practitioners we must maintain the balance between the demands for evidence-based practice and our compassion and respect for our most vulnerable of patients.

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In 1989 the first National Women's Health Policy was launched in Australia. Now, 20 years later, the Federal Government has announced plans for the development of a new National Women's Health Policy to address the health needs of Australian women. The Policy will be based on five principles: gender equity; health equity between women; a focus on prevention; an evidence base for interventions; and a life course approach. This editorial examines the role for law in the development of a new National Women's Health Policy. It considers the relevance of regulatory frameworks for health research in supporting an evidence base for health interventions and analyses the requirement in the National Health and Medical Research Council's National Statement on Ethical Conduct in Human Research for "fair inclusion" of research participants. The editorial argues for a holistic approach to women's health that includes regulatory frameworks for research, identification of funding priorities for research, and the need for a dedicated government department or agency to promote women's health.

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This chapter presents the current challenges facing legislators, regulators, researchers, and ethics committees in determining how and when to include women appropriately in research, and ensure that sex analysis of research results is routinely performed. It offers five issues that require attention to address these challenges: that national regulatory statements could provide researchers with definitions of the terms ‘sex’ , ‘gender’, and ‘gender equity’ in research; that sex and gender analysis should be built into health research protocols; the lack of internationally comparable data regarding the rates of inclusion of men and women presents a major hurdle for analysing the efficacy of different regulatory strategies; the accessibility of data would be facilitated by a requirement for publication of the results of health research to include descriptions of sex analysis performed on research data; and that institutional review boards, research ethics committees, and researchers themselves require better education about the scientific and ethical importance of including of women in clinical research.

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One of the core values to be applied by a body reviewing the ethics of human research is justice. The inclusion of justice as a requirement in the ethical review of human research is relatively recent and its utility had been largely unexamined until debates arose about the conduct of international biomedical research in the late 1990s. The subsequent amendment of authoritative documents in ways that appeared to shift the meaning of conceptions of justice generated a deal of controversy. Another difficulty has been that both the theory and the substance of justice that are applied by researchers or reviewers can be frequently seen to be subjective. Both the concept of justice – whether distributive or commutative - and what counts as a just distribution or exchange – are given different weight and meanings by different people. In this paper, the origins and more recent debates about the requirement to consider justice as a criterion in the ethical review of human research are traced, relevant conceptions of justice are distinguished and the manner in which they can be applied meaningfully in the ethical review all human research is identified. The way that these concepts are articulated in, and the intent and function of, specific paragraphs of the National Statement on Ethical Conduct in Human Research (NHMRC, ARC, UA, 2007) (National Statement) is explained. The National Statement identifies a number of issues that should be considered when a human research ethics committee is reviewing the justice aspects of an application. It also provides guidance to researchers as to how they can show that there is a fair distribution of burdens and benefits in the participant experience and the research outcomes. It also provides practical guidance to researchers on how to think through issues of justice so that they can demonstrate that the design of their research projects meets this ethical requirement is also provided

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The ethical governance of biomedical research is an area of intense international debate. Scholars argue about who should regulate and how, the appropriate role for ethics committees, what kind of research should be included, and who should be involved in monitoring compliance. A particular aspect of these debates concerns the inclusion of women as research participants and the efforts to ensure that researchers consistently investigate questions of sex and gender in health research. There is increasing evidence of the role of sex in the manifestation and course of some illnesses and their treatment. Moreover, evidence suggests that gendered expectations also affect health outcomes. This special issue investigates how researchers are addressing these issues and debates the appropriate roles of policy makers, ethicists, and lawyers in ensuring that sex and gender differences are taken into account in the development, conduct, and reporting of health research.

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Objective: The study aimed to examine the difference in response rates between opt-out and opt-in participant recruitment in a population-based study of heavy-vehicle drivers involved in a police-attended crash. Methods: Two approaches to subject recruitment were implemented in two different states over a 14-week period and response rates for the two approaches (opt-out versus opt-in recruitment) were compared. Results: Based on the eligible and contactable drivers, the response rates were 54% for the optout group and 16% for the opt-in group. Conclusions and Implications: The opt-in recruitment strategy (which was a consequence of one jurisdiction’s interpretation of the national Privacy Act at the time) resulted in an insufficient and potentially biased sample for the purposes of conducting research into risk factors for heavy-vehicle crashes. Australia’s national Privacy Act 1988 has had a long history of inconsistent practices by state and territory government departments and ethical review committees. These inconsistencies can have profound effects on the validity of research, as shown through the significantly different response rates we reported in this study. It is hoped that a more unified interpretation of the Privacy Act across the states and territories, as proposed under the soon-to-be released Australian Privacy Principles will reduce the recruitment challenges outlined in this study.