Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for movement disorders and/or (...) psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for movement disorders and/or (...) psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for movement disorders and/or (...) psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

ABSTRACT In establishing National Bioethics Organisations (NBOs), liberal democracies seek to acknowledge the diversity of strongly held ethical positions and the imperative to engage in public debate about important bioethical decisions. NBOs are typically given a range of responsibilities, including contributing to and stimulating public debate; providing expert opinion on relevant issues for policy deliberations; and developing public policy. The state is now found to have an interest in areas previously thought to be a matter of individual choice. NBOs can (...) provide one way of opening up public debate to allow the diversity of views to be heard in a manner that is well‐informed, articulate and responsive to both expert and ‘lay’ public views. We draw on debates in political theory about democratic decision‐making and on the policy making roles of some key NBOs. We are particularly interested in examining the capacity of NBOs to meet the democratic ideal of effective participation by the public, or citizenry, especially by those who are directly affected by the policies, in the development of effective public policy. We provide a basic framework for policy development involving NBOs that can begin to meet this ideal, a process of ‘contested deliberation’. (shrink)

ABSTRACT In establishing National Bioethics Organisations (NBOs), liberal democracies seek to acknowledge the diversity of strongly held ethical positions and the imperative to engage in public debate about important bioethical decisions. NBOs are typically given a range of responsibilities, including contributing to and stimulating public debate; providing expert opinion on relevant issues for policy deliberations; and developing public policy. The state is now found to have an interest in areas previously thought to be a matter of individual choice. NBOs can (...) provide one way of opening up public debate to allow the diversity of views to be heard in a manner that is well‐informed, articulate and responsive to both expert and ‘lay’ public views. We draw on debates in political theory about democratic decision‐making and on the policy making roles of some key NBOs. We are particularly interested in examining the capacity of NBOs to meet the democratic ideal of effective participation by the public, or citizenry, especially by those who are directly affected by the policies, in the development of effective public policy. We provide a basic framework for policy development involving NBOs that can begin to meet this ideal, a process of ‘contested deliberation’. (shrink)

Beneficence is one of the four principles that form the basis of the Australian National Statement. The aim of this paper is to explore the philosophical development of this principle and to clarify the role that beneficence plays in contemporary discussions about human research ethics. By examining the way that guidance documents, particularly the National Statement, treats beneficence we offer guidance to researchers and human research ethics committee members on the practical application of what can be a conceptually difficult principle.

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 great 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 of all human research is identified.We also explain the way that these concepts are articulated in, and the intent and function of, specific paragraphs of the National Statementon Ethical Conduct in Human Research (2007). 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. We provide 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. We also provide 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. (shrink)

The 30th anniversary of the first DBS surgery of the subthalamic nucleus (STN) for Parkinson’s disease was celebrated in Grenoble this June. Since this initial surgery, the application of DBS has e...

In a recent study of undergraduates' use of information and communication technologies to support their academic work, we asked students to make video recordings of their personal study sessions. Our motivation was to capture their study practice as it occurred rather than relying solely on self-reports of their perceived or remembered practice. As we worked with the participant-created videos, we recognised their uniqueness as sources of evidence and their potential to reveal situated and authentic data. In this article, we have (...) identified some of the complex and problematic elements of this method as we trace its evolution in our research practice. (shrink)

In their article ‘Unintended consequences of human research ethics committees: au revoir workplace studies?’, Greg Bamber and Jennifer Sappey set out some real obstacles in the practices and attitudes of some Human Research Ethics Committees (HRECs), to research in the social sciences and particularly in industrial sociology. They sheet home these attitudes and practices to the way in which various statements in the NHMRC’s National Statement [1999] are implemented, which they say is often ‘in conflict with an important stream of (...) industrial sociological research’ in Australia. They do not discuss the recently completed revision of the NS. We undertake to show that the revised National Statement meets their concerns about research in industrial sociology, and to draw attention to the resources of the revised National Statement that engage with those concerns. A more general aim is to display the greater scope, in the revised National Statement, for researchers to show to HRECs that their research is justified by virtue of its reflecting the established methodology and traditions of their discipline. The revised National Statement, we suggest, provides for a more flexible and responsive approach than its predecessor to the ethical review of many areas of research. (shrink)

Theoretical approach - Prejudice and science - Prejudice and politics - Science and sex - Medicine and prejudice - Prejudice and literature.

The contribution of this book to the field of reconciliation is both theoretical and practical, recognizing that good theory guides effective practice and practice is the ground for compelling theory. Using a Girardian hermeneutic as a starting point, a new conceptual Gestalt emerges in these essays, one not fully integrated in a formal way but showing a clear understanding of some of the challenges and possibilities for dealing with the deep divisions, enmity, hatred, and other effects of violence. By situating (...) discourse about reconciliation within the context of Girardian thought, it becomes clear that like Peter who vowed he would never deny Jesus but ended up doing it three times any of us is susceptible to the siren call of angry resentment and retaliation. It is with a profound awareness of the power of violence that the emergence of mimetic discourse around reconciliation takes on particular urgency.". (shrink)

This paper draws on a phenomenological study of students’ experience of the demands of a module, Reading and Writing Academic Texts, designed with the specific aim of developing students’ academic literacy. This module is a core, compulsory component of the mixed-mode Bachelor of Education Honours programme offered by the School of Education and Development at the University of Kwa-Zulu Natal in Pietermaritzburg, South Africa. The study thus foregrounds issues of language and literacy, and is contextualized within a “distance” model of (...) teacher education.The paper proceeds with a brief focus on teacher education through “distance” and the role and nature of this form of pedagogical delivery. It then engages directly with phenomenology and the relevance of a phenomenological sensitivity to pedagogical contexts. In order to demonstrate the type of process that can nudge phenomenological sensitivity into being, two aspects of the phenomenological research process that shaped this study – namely, identifying the phenomenon under study, and the phenomenological interview – are presented. The paper concludes with an explanation of the type of data analysis used, and examples of its application in this study. (shrink)

This paper draws on a phenomenological study of students' experience of the demands of a module, Reading and Writing Academic Texts , designed with the specific aim of developing students' academic literacy. This module is a core, compulsory component of the mixed-mode Bachelor of Education Honours programme offered by the School of Education and Development at the University of Kwa-Zulu Natal in Pietermaritzburg, South Africa. The study thus foregrounds issues of language and literacy, and is contextualized within a "distance" model (...) of teacher education.The paper proceeds with a brief focus on teacher education through "distance" and the role and nature of this form of pedagogical delivery. It then engages directly with phenomenology and the relevance of a phenomenological sensitivity to pedagogical contexts. In order to demonstrate the type of process that can nudge phenomenological sensitivity into being, two aspects of the phenomenological research process that shaped this study - namely, identifying the phenomenon under study, and the phenomenological interview - are presented. The paper concludes with an explanation of the type of data analysis used, and examples of its application in this study. (shrink)

The contribution of this book to the field of reconciliation is both theoretical and practical, recognizing that good theory guides effective practice and practice is the ground for compelling theory. Using a Girardian hermeneutic as a starting point, a new conceptual Gestalt emerges in these essays, one not fully integrated in a formal way but showing a clear understanding of some of the challenges and possibilities for dealing with the deep divisions, enmity, hatred, and other effects of violence.

The conduct of prior ethics review of human research projects helps to protect vulnerable groups or populations from potential negative impacts of research. Contemporary considerations in human research considers the concept of vulnerability in terms of access to research opportunities, impacts on the consenting process, selection bias, and the generalisability of results. Recent work questions the validity of using enumerated lists as a check box approach to protect research participants from exploitation. Through the use of broad categories to treat cohorts (...) of human research participants as homogenous classes and label some participants as vulnerable merely because they are members of a particular class, some ethics reviewers have used the National Statement on Ethical Conduct in Human Research to strip individuals of their “ethical equality”. Labelling people as vulnerable does not help researchers or human research ethics committee members develop an understanding of the complexities of applying the principles of respect and of justice in ethical decision-making. Conversely, defining specific cohorts of research participants as needing nuanced ethical consideration, due to their vulnerable nature, may imply that other population groups need not be considered vulnerable. We contend that this assumption is erroneous. This paper explores the way that human research ethics guidance documents treat vulnerability within the Australian context and draws on contemporary discussion to focus an alternative perspective based on the principles in the National Statement on Ethical Conduct in Human Research for researchers and human research ethics committee members to consider. (shrink)

Research is increasingly recognised as a key component of medical curricula, offering a range of benefits including development of skills in evidence-based medicine. The literature indicates that experienced academic supervision or mentoring is important in any research activity and positively influences research output. The aim of this project was to investigate the human research ethics experiences and knowledge of three groups: medical students, and university academic staff and clinicians eligible to supervise medical student research projects; at two Australian universities. Training (...) in research ethics was low amongst academic staff and clinicians eligible to supervise medical student research. Only two-thirds of academic staff and students and less than half of clinicians surveyed indicated that specific patient consent was required for a doctor to include patient medical records within a research publication. There was limited awareness of requirements for participant information and consent forms amongst all groups. In the case of clinical trials, fewer clinicians and students than academics indicated there was a requirement to obtain consent. Awareness of the ethics committee focus on respect was low across all groups. This project has identified significant gaps in human research ethics understanding among medical students, and university academic staff and clinicians. The incorporation of research within medical curricula provides the impetus for medical schools and their institutions to ensure that academic staff and clinicians who are eligible and qualified to supervise students’ research projects are appropriately trained in human research ethics. (shrink)