Overdiagnosis is an emerging problem in health policy and practice: we address its definition and ethical implications. We argue that the definition of overdiagnosis should be expressed at the level of populations. Consider a condition prevalent in a population, customarily labelled with diagnosis A. We propose that overdiagnosis is occurring in respect of that condition in that population when the condition is being identified and labelled with diagnosis A in that population ; this identification and labelling would be accepted as (...) correct in a relevant professional community; but the resulting label and/or intervention carries an unfavourable balance between benefits and harms. We identify challenges in determining and weighting relevant harms, then propose three central ethical considerations in overdiagnosis: the extent of harm done, whether harm is avoidable and whether the primary goal of the actor/s concerned is to benefit themselves or the patient, citizen or society. This distinguishes predatory, misdirected and tragic overdiagnosis; the degree of harm moderates the justifiability of each type. We end with four normative challenges: methods for adjudicating between professional standards and identifying relevant harms and benefits should be procedurally just; individuals, organisations and states are differently responsible for addressing overdiagnosis; overdiagnosis is a matter for distributive justice: the burdens of both overdiagnosis and its prevention could fall on the least-well-off; and communicating about overdiagnosis risks harming those unaware that they may have been overdiagnosed. These challenges will need to be addressed as the field develops. (shrink)

The empirical turn in bioethics and the deliberative turn in democracy theory occurred at around the same time, one at the intersection of bioethics and social science,1 2 the other at the intersection of political philosophy and political science.3–5 Empirical bioethics and deliberative democratic approaches both engage with immediate problems in policy and practice with normative intent, so it was perhaps inevitable that they would eventually find one another,6–8 and that deliberative research would become more common in bioethics.9 This commentary (...) responds to a paper by Ford et al, who ran a single jury of 18 people in Brighton in the UK in June 2018.10 The jury were asked to consider whether secondary research use of non-structured, free-text data from medical records should be permitted. I will consider three issues: the effort required in deliberative work, the challenge of sampling and selection of jurors and the basis for drawing normative conclusions from deliberative research. First: this report makes clear the effort involved in running a jury. These researchers contracted an external agency experienced in the method, established an oversight committee of policy-makers with power to act, developed expert witness briefs, selected witnesses and coordinated their testimony, and created a questionnaire to measure participants’ views, activities to support their understanding, and a scenario for consideration. …. (shrink)

Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities in (...) New South Wales, Australia to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. (shrink)

I argue that greater attention to human agency and normativity in both researching and practicing service improvement may be one strategy for enhancing improvement science, illustrating with examples from cancer screening. Improvement science tends to deliberately avoid explicit normativity, for paradigmatically coherent reasons. But there are good reasons to consider including explicit normativity in thinking about improvement. Values and moral judgements are central to social life, so an adequate account of social life must include these elements. And improvement itself is (...) unavoidably normative: it assumes that things could and should be better than they are. I seek to show that normativity will always be implicated in the creation of evidence, the design of programs, the practice of healthcare, and in citizens’ judgements about that care, and to make a case that engaging with this normativity is worthwhile. (shrink)

This article provides a commentary on Standards of practice in empirical bioethics research by Ives and colleagues. There is much to admire in the paper, and in the demanding consensus-building process on which it reports. I discuss the problems and limits of methodological standardisation, and a central conceptual tension that appears to have divided participants. I suggest that the finished product should be understood as a record of a methodological conversation, rather than being used as a disciplinary tool to limit (...) the evolution of empirical bioethics. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 57-59, July 2011.

It is not clear whether breast cancer screening is a public health intervention or an individual clinical service. The question is important because the concepts best suited for ethical reasoning in public health might be different to the concepts commonly employed in biomedical ethics. We consider it likely that breast screening has elements of a public health intervention and used an empirical ethics approach to explore this further. If breast screening has public health characteristics, it is probable that policy and (...) practice experts will employ socially embedded concepts when reasoning about it. We gathered data on whether and how these concepts existed in the discussion and reasoning of Australian breast screening experts. We found that experts employed these concepts when talking about the purpose and practices of breast screening, and the behaviour of breast screening professionals and consumers. Experts gave varied judgements about breast screening based on reasoning with these concepts, considering it to be more or less successful in contributing to the public interest and in incorporating socially embedded concepts into its operational agenda. Our findings are compatible with breast screening having public health characteristics. We advocate for the incorporation of socially embedded concepts in breast screening policy and practice. (shrink)

In this commentary, I explore the ethically relevant dimensions of menu labelling. The evidence that menu labelling changes purchasing or consumption behaviour is contentious and inconclusive; there is some suggestion that menu labelling may preferentially influence the behaviour of healthier and wealthier citizens. Some suggest that menu labelling is unjust, as it fails to direct resources towards those who most need them. An alternative is to see menu labels as just one of a set of strategies that can increase people’s (...) real opportunities to be healthy. Complementing strategies will be necessary to ensure that all citizens can consider and value food choices, which may include becoming a more critical consumer in the food marketplace. Menu labels may also have the potential to shift our attention from people to food, reallocate responsibility in the food environment and facilitate structural change. It would be a mistake to expect too much of menu labels alone: rather, they should be integrated into a broader programme that supports health opportunities, especially for the least well off. (shrink)

Evidence-Based Medicine (EBM) has now been part of the dominant medical paradigm for 15 years, and has been frequently debated and progressively modified. One question about EBM that has not yet been considered systematically, and is now particularly timely, is the question of the novelty, or otherwise, of the principles and practices of EBM. We argue that answering this question, and the related question of whether EBM-type principles and practices are unique to medicine, sheds new light on EBM and has (...) practical implications for those involved in all EBM. This is because one's answer to the question (whether explicit or implicit) affects the amount and type of funding and attention received by EBM, the extent to which EBM, and the generation, judgment and use of evidence more generally, can be appropriated by certain groups and questioned by others, and the extent to which truly unique socio-political developments in evidence, and in medicine more generally, are recognized and harnessed. (shrink)

BackgroundCervical cancer disproportionately burdens disadvantaged women. Organised cervical screening aims to make cancer prevention available to all women in a population, yet screening uptake and cancer incidence and mortality are strongly correlated with socioeconomic status. Reaching underscreened populations is a stated priority in many screening programs, usually with an emphasis on something like ‘equity’. Equity is a poorly defined and understood concept. We aimed to explain experts’ perspectives on how cervical screening programs might justifiably respond to ‘the underscreened’.MethodsThis paper reports (...) on a grounded theory study of cervical screening experts involved in program organisation. Participants were 23 experts from several countries and a range of backgrounds: gynecology; epidemiology; public health; pathology; general practice; policy making. Data were gathered via semi-structured interview and concepts developed through transcript coding and memo writing.ResultsMost experts expressed an intuitive commitment to reducing systematic differences in screening participation or cancer outcomes. They took three different implicit positions, however, on what made organised programs justifiable with respect to underscreened populations. These were: 1) accepting that population screening is likely to miss certain disenfranchised groups for practical and cultural reasons, and focusing on maximising mainstream reach; 2) identifying and removing barriers to screening; and 3) providing parallel tailored screening services that attended to different cultural needs. Positions tended to fall along country of practice lines.ConclusionsExperts emphasised the provision of opportunity for underscreened populations to take up screening. A focus on opportunity appeared to rely on tacit premises not supported by evidence: that provision of meaningful opportunity leads to increased uptake, and that increased uptake of an initial screening test by disadvantaged populations would decrease cervical cancer incidence and mortality. There was little attention to anything other than the point of testing, or the difficulties disadvantaged women can have in accessing follow up care. The different approaches to ‘improving equity’ taken by participants are differently justified, and differently justifiable, but none attend directly to the broader conditions of disadvantage. (shrink)

High-dose chemotherapy and autologous stem cell transplantation is used to treat some advanced malignancies. It is a traumatic procedure, with a high complication rate and significant mortality. ASCT patients and their carers draw on many sources of information as they seek to understand the procedure and its consequences. Some seek information from beyond orthodox medicine. Alternative beliefs and practices may conflict with conventional understanding of the theory and practice of ASCT, and ‘contested understandings’ might interfere with patient adherence to the (...) strict and demanding protocols required for successful ASCT.The present study, conducted in Sydney, Australia, examines narrative-style interviews with 10 sequentially recruited ASCT patients and nine of their carers conducted at the time of transplant and three months later. Transcripts were read for instances of mention of alternative advice, and for instances of contested understanding of information relevant to the transplant.Patients and carer pairs expressed closely concordant views about alternative advice. Five pairs were consulting alternative practitioners. Contested understanding was expressed in four domains—understandings of the transplant itself and its underlying theory, of the relationship between the components of the ‘transplant’, of the nature and role of stem cells, and of beliefs about bodily function and life-style. Contested understandings of the transplant treatment were expressed as predominantly personal interpretations of orthodox informationPatients and carers seemed to recognise that alternative and conventional systems were discordant, yet they were able to separate the two, and adhere to each practice without prejudicing their medical treatment. A single case of late, post-transplant repudiation of Western medicine is discussed to emphasise some of the possible determinants of dissonance when it does occur. (shrink)

Bioethics, Volume 35, Issue 7, Page 623-633, September 2021.

Many healthcare practices expose people to risks of harmful outcomes. However, the major theories of moral philosophy struggle to assess whether, when and why it is ethically justifiable to expose individuals to risks, as opposed to actually harming them. Sven Ove Hansson has proposed an approach to the ethical assessment of risk imposition that encourages attention to factors including questions of justice in the distribution of advantage and risk, people’s acceptance or otherwise of risks, and the scope individuals have to (...) influence the practices that generate risk. This paper investigates the ethical justifiability of preventive healthcare practices that expose people to risks including overdiagnosis. We applied Hansson’s framework to three such practices: an ‘ideal’ breast screening service, a commercial personal genome testing service, and a guideline that lowers the diagnostic threshold for hypertension. The framework was challenging to apply, not least because healthcare has unclear boundaries and involves highly complex practices. Nonetheless, the framework encouraged attention to issues that would be widely recognised as morally pertinent. Our assessment supports the view that at least some preventive healthcare practices that impose risks including that of overdiagnosis are not ethically justifiable. Further work is however needed to develop and/or test refined assessment criteria and guidance for applying them. (shrink)

This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each (...) guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources. (shrink)

Peer review of manuscripts for biomedical journals has become a subject of intense ethical debate. One of the most contentious issues is whether or not peer review should be anonymous. This study aimed to generate a rich, empirically-grounded understanding of the values held by journal editors and peer reviewers with a view to informing journal policy. Qualitative methods were used to carry out an inductive analysis of biomedical reviewers’ and editors’ values. Data was derived from in-depth, open-ended interviews with journal (...) editors and peer reviewers. Data was “read for” themes relevant to reviewer anonymisation and interactions among editors, reviewers, and authors. Editors and peer reviewers provided three arguments that would support a more open and interactive peer-review process. First, a number of participants emphasised the importance of not only ensuring the scientific quality of published research but also nurturing their colleagues and supporting their communities. Second, many spoke about the ongoing moral responsibilities that reviewers and editors felt toward authors. Finally, participants spoke at length about their enjoyment of social interactions and of the value of collective, rather than isolated, reasoning processes. Whether or not journal editors decide to allow anonymous review , the values of editors and reviewers need to be seriously addressed in codes of publication ethics, in the management of biomedical journals, and in the establishment of journal policies. (shrink)

BackgroundThere is a growing concern about artificial intelligence (AI) applications in healthcare that can disadvantage already under-represented and marginalised groups (eg, based on gender or race).ObjectivesOur objectives are to canvas the range of strategies stakeholders endorse in attempting to mitigate algorithmic bias, and to consider the ethical question of responsibility for algorithmic bias.MethodologyThe study involves in-depth, semistructured interviews with healthcare workers, screening programme managers, consumer health representatives, regulators, data scientists and developers.ResultsFindings reveal considerable divergent views on three key issues. First, (...) views on whether bias is a problem in healthcare AI varied, with most participants agreeing bias is a problem (which we call the bias-critical view), a small number believing the opposite (the bias-denial view), and some arguing that the benefits of AI outweigh any harms or wrongs arising from the bias problem (the bias-apologist view). Second, there was a disagreement on the strategies to mitigate bias, and who is responsible for such strategies. Finally, there were divergent views on whether to include or exclude sociocultural identifiers (eg, race, ethnicity or gender-diverse identities) in the development of AI as a way to mitigate bias.Conclusion/significanceBased on the views of participants, we set out responses that stakeholders might pursue, including greater interdisciplinary collaboration, tailored stakeholder engagement activities, empirical studies to understand algorithmic bias and strategies to modify dominant approaches in AI development such as the use of participatory methods, and increased diversity and inclusion in research teams and research participant recruitment and selection. (shrink)

The Routledge Handbook of Feminist Bioethics is an outstanding resource for anyone with an interest in feminist bioethics, with chapters covering topics from justice and power to the climate crisis. Comprising 42 chapters by emerging and established scholars, the volume is divided into six parts: Foundations of Feminist Bioethics Identity and Identifications Science, Technology and Research Health and Social Care Reproduction and Making Families Widening the Scope of Feminist Bioethics The volume is essential reading for anyone with an interest in (...) bioethics or feminist philosophy, and will prove an invaluable resource for scholars, teachers, and advanced students. (shrink)

Bioethics, Volume 36, Issue 6, Page 728-730, July 2022.

Background Parental refusal of routine childhood vaccination remains an ethically contested area. This systematic review sought to explore and characterise the normative arguments made about parental refusal of routine vaccination, with the aim of providing researchers, practitioners, and policymakers with a synthesis of current normative literature. Methods Nine databases covering health and ethics research were searched, and 121 publications identified for the period Jan 1998 to Mar 2022. For articles, source journals were categorised according to Australian Standard Field of Research (...) codes, and normative content was analysed using a framework analytical approach. Results Most of the articles were published in biomedical journals (34%), bioethics journals (21%), and journals that carry both classifications (20%). Two central questions dominated the literature: (1) Whether vaccine refusal is justifiable (which we labelled ‘refusal arguments’); and (2) Whether strategies for dealing with those who reject vaccines are justifiable (‘response arguments’). Refusal arguments relied on principlism, religious frameworks, the rights and obligations of parents, the rights of children, the medico-legal best interests of the child standard, and the potential to cause harm to others. Response arguments were broadly divided into arguments about policy, arguments about how individual physicians should practice regarding vaccine rejectors, and both legal precedents and ethical arguments for vaccinating children against a parent’s will. Policy arguments considered the normative significance of coercion, non-medical or conscientious objections, and possible reciprocal social efforts to offset vaccine refusal. Individual physician practice arguments covered nudging and coercive practices, patient dismissal, and the ethical and professional obligations of physicians. Most of the legal precedents discussed were from the American setting, with some from the United Kingdom. Conclusions This review provides a comprehensive picture of the scope and substance of normative arguments about vaccine refusal and responses to vaccine refusal. It can serve as a platform for future research to extend the current normative literature, better understand the role of cultural context in normative judgements about vaccination, and more comprehensively translate the nuance of ethical arguments into practice and policy. (shrink)

Contentless experience involves an absence of mental content such as thought, perception, and mental imagery. In academic work it has been classically treated as including states like those aimed for in Shamatha, Transcendental, and Stillness Meditation. We have used evidence synthesis to select and review 135 expert texts from within the three traditions. In this paper we identify the features of contentless experience referred to in the expert texts and determine whether the experiences are the same or different across the (...) practices with respect to each feature. We identify 65 features reported or implied in one or more practices, with most being reported or implied in all three. While there are broad similarities in the experiences across the traditions, we find that there are differences with respect to four features and possibly many others. The main difference identified is that Shamatha involves substantially greater attentional stability and vividness. Another key finding is that numerous forms of content are present in the experiences, including wakefulness, naturalness, calm, bliss/joy, and freedom. The findings indicate that meditation experiences described as contentless in the academic literature can in fact involve considerable variation, and that in many and perhaps most cases these experiences are not truly contentless. This challenges classical understandings in academic research that in these so-called contentless experiences all content is absent, and that the experiences are therefore an identical state of _pure consciousness_ or consciousness itself. Our assessment is that it remains an open question whether the experiences aimed for in the three practices should be classed as pure consciousness. Implications of our analysis for neuroscientific and clinical studies and for basic understandings of the practices are discussed. (shrink)

Using this case, Lavazza and Reichlin (2018) explored the ethical dilemmas associated with decision making in people with Alzheimer’s disease (AD), specifically when their new preferences conflict...

Research ethics is a core component of undergraduate psychology curricula, typically first encountered in introductory textbooks. Previous analyses of introductory textbooks focused on human research ethics. Given growing concerns about animal research—particularly among college students—we analyzed discussions of animal research ethics in 18 introductory psychology textbooks. Our results revealed that while most textbooks address this topic, defenses of animal use and mentions of oversight account for a majority of content, while discussions of ethics were lacking. We discuss implications of these (...) results and suggest improvements for engaging students to think critically about animal research ethics. (shrink)

The phenomenological effects of deep brain stimulation (DBS) on the self of the patient remains poorly understood and under described in the literature, despite growing evidence that a significant number of patients experience postoperative neuropsychiatric changes. To address this lack of phenomenological evidence, we conducted in-depth, semistructured interviews with 17 patients with Parkinson's disease who had undergone DBS. Exploring the subjective character specific to patients' experience of being implanted gives empirical and conceptual understanding of the potential phenomenon of DBS-induced self-estrangement. (...) Our study concluded that (1) the more patients preoperatively felt alienated by their illness, the more they experienced postoperative self-estrangement, and (2) the notion of self-estrangement seems to exist in association with certain common qualitative characters, namely, loss of control, which reflects a deteriorative estrangement, and distorted perception of capacities, which reveals a restorative estrangement. These findings indicate that subjective self-reports help us to understand some aspects of the potential phenomenon of DBS-induced self-estrangement. (shrink)

Shamatha, Transcendental, and Stillness Meditation are said to aim for “contentless” experiences, where mental content such as thoughts, perceptions, and mental images is absent. Silence is understood to be a central feature of those experiences. The main source of information about the experiences is texts by experts from within the three traditions. Previous research has tended not to use an explicit scientific method for selecting and reviewing expert texts on meditation. We have identified evidence synthesis as a robust and transparent (...) method that is suitable for this purpose. In this paper we use evidence synthesis based on expert texts to examine silence/quietness as a feature of the contentless experiences in the three practices. Objective criteria were used to select a sample of 135 expert texts. A database containing the expert descriptions of the meditation techniques and experiences was produced by extracting the relevant material from the publications and coding that material to differentiate individual features. The database, which forms part of the supplementary material for this paper, identifies each feature of the contentless experiences referred to in the expert texts, including silence/quietness. Our key finding is that the experts indicate silence/quietness has a particular connection with stillness, and the absence of concepts, mental activity/noise, thoughts, and disturbance. Further analysis leads to the following insights. The silence/quietness reflects the absence of thoughts and sounds, and this fits neatly with a conception of silence/quietness as the absence of internal and external noise. In some cases the terms silence and quietness may also reflect the absence of other disturbances such as non-auditory perceptions, mental images, and negative feelings. That would fit with a conception of silence/quietness as complete calm or absence of disturbance. It is not clear from the expert texts how silence/quietness is distinct from other features such as stillness that also reflect the absence of disturbances. As a separate matter, silence/quietness has connections with all the other features of the contentless experiences, but the closeness of the connections varies. Our work uncovers fine distinctions and ambiguities which lead to new research questions that can be explored in future studies. (shrink)

In contentless experience there is an absence of mental content such as thought, perception, and mental imagery. The path to contentless experience in meditation can be taken to comprise the meditation technique, and the experiences on the way to the contentless “goal-state/s”. Shamatha, Transcendental, and Stillness Meditation are each said to access contentless experience, but the path to that experience in each practice is not yet well understood from a scientific perspective. We have employed evidence synthesis to select and review (...) 135 expert texts from those traditions. In this paper we describe the techniques and interim-states based on the expert texts and compare them across the practices on key dimensions. Superficially, Shamatha and Transcendental Meditation appear very different to Stillness Meditation in that they require bringing awareness to a meditation object. The more detailed and systematic approach taken in this paper indicates that posturally Shamatha is closer to Stillness Meditation, and that on several other dimensions Shamatha is quite different to both other practices. In particular, Shamatha involves greater measures to cultivate attentional stability and vividness with respect to an object, greater focusing, less tolerance of mind-wandering, more monitoring, and more deliberate doing/control. Achieving contentless experience in Shamatha is much slower, more difficult, and less frequent. The findings have important implications for taxonomies of meditation and for consciousness, neuroscientific, and clinical research/practice, and will provide new and useful insights for meditation practitioners. (shrink)

This book is a qualitative, interpretive, phenomenological, and interdisciplinary, examination of food and food practices and their meanings in the modern world. Each chapter thematically focuses upon a particular food practice and on some key details of the examined practice, or on the practice’s social and cultural impact.

Scheinerman (2023) proposes that at the Human Genome Editing Initiative international summit (held in March 2023) there should have been a parallel, separate Citizens’ Jury, and that the Human Geno...

This article draws on an empirical investigation of how Australia’s cervical screening program came to be the way it is. The study was carried out using grounded theory methodology and primarily uses interviews with experts involved in establishing, updating or administering the program. We found strong differences in experts’ normative evaluations of the program and beliefs about optimal ways of achieving the same basic outcome: a reduction in morbidity and mortality caused by invasive cervical cancer. Our analysis demonstrates how variations (...) in values and preferences associated with key concepts underpinning public health such as benefit, harm and burden led to different perspectives on the purpose of an organized cervical screening program. These variations were largely driven by different bases of professional experience. Differently conceived purposes in turn led to conflict over how the program should be operationalized. Following Frith’s model of empirical bioethics, the results of the study both draw on and inform the existing public health and screening ethics literature. (shrink)

In the rapidly evolving healthcare environment, perhaps no role is in greater flux and redefinition than that of the clinical bioethicist. The discussion of ethics consultation in the bioethics literature has moved from an ambiguous concern regarding its proper place in the clinical milieu to the more provocative question of which methods and theories should best characterize the intellectual and practical work it claims to do. The American Society for Bioethics and Humanities addressed these concerns in its 1998 report, CoreCompetenciesforHealthCareEthicsConsultation. (...) The report tries to answer the question as to what disciplinary training, background experience, and levels of knowledge in ethics the clinical ethics consultant should have, and what specific skills and character traits the clinical ethics consultant should cultivate. In addition to acquiring knowledge of common bioethical issues, theoretical concepts in ethical theory and moral reasoning, and health-related law and policy, the report also recommends that ethics consultants demonstrate knowledge of the health beliefs and perspectives of patients and healthcare providers. In our opinion, this recommendation underscores a crucial aspect of the practice of ethics consultation in the increasingly multicultural settings of healthcare institutions. Clearly, the dynamic of American life and culture is permeated with diversity and variety as new groups suffuse their own beliefs and faith perspectives into the health sector. New immigrant groups force society to question traditional healthcare practices and to accommodate changing medical needs. (shrink)

One hypothesis concerning the human dorsal anterior cingulate cortex (ACC) is that it functions, in part, to signal the occurrence of conflicts in information processing, thereby triggering compensatory adjustments in cognitive control. Since this idea was first proposed, a great deal of relevant empirical evidence has accrued. This evidence has largely corroborated the conflict-monitoring hypothesis, and some very recent work has provided striking new support for the theory. At the same time, other findings have posed specific challenges, especially concerning the (...) way the theory addresses the processing of errors. Recent research has also begun to shed light on the larger function of the ACC, suggesting some new possibilities concerning how conflict monitoring might fit into the cingulate's overall role in cognition and action. (shrink)

This article suggests a way to circumvent some of the problems that follow from the lack of consensus on a definition of emotion (Izard, 2010; Kleinginna & Kleinginna, 1981) and emotion regulation (Cole, Martin, & Dennis, 2004) by adopting a conceptual framework based on discrete emotions theory and focusing on specific emotions. Discrete emotions theories assume that neural, affective, and cognitive processes differ across specific emotions and that each emotion has particular motivational and regulatory functions. Thus, efforts at regulation should (...) target the specific dysregulated emotions. The positive effects of emotion regulation are more likely to be optimized when they result from or lead to emotion utilization—the constructive use of the energy of emotion arousal. Effective processes for regulation differ for basic emotions and emotion schemas. This article identifies neural systems that facilitate emotion experiences and emotion regulation processes. It considers the implications of the developmental change from basic emotions to emotion schemas, and also briefly discusses the effects of interventions on changes in emotion knowledge, emotion regulation, and social and emotional competence. (shrink)

BackgroundWhen conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations.MethodsA systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review.ResultsOf 1447 articles found 1391 were excluded (...) ; 56 were relevant and included. Articles were categorised into original research that evaluated the consent process or publications detailing the process of seeking consent and guidelines for ethical research. Guidelines were categorised into international ; national and state/regional/local guidelines. In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and “plain language” forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the ‘Grey literature’ concerns about the consent process are identified but no solutions are offered.ConclusionConsultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process. (shrink)

Some scholars have argued that CEOs may have excessive influence on their foundation's trustees to give away a portion of company profits to charitable causes in order to gain access to elite circles or support the CEO's personal causes. This may result in charitable contributions that ultimately serve the personal interests of the CEOs without regard to corporate interests or social needs. We examine the extent that CEOs appear to direct charitable giving to be compatible with their own personal interests, (...) and if CEO participation on the foundation board affects the relationship between CEO personal interests and charitable giving. Using a sample of 160 corporate foundations, our results showed that CEOs' interests, as measured by membership in different non-profit organizations, was associated with foundation charitable giving. This association decreased, but was not eliminated, when CEOs were absent from the foundation board. Implications of these findings for researchers and managers are discussed in regards to both agency theory and stewardship theory. (shrink)

This paper explores gender barriers to the formation of the female mentor – male protégé relationship. The authors consider both physiological as well as social gender as a way to help understand the scarcity of these relationships. A number of gender-related factors are considered, including organizational demographics, relational demography, sexual liaisons, gender stereotypes, gender behaviors, and power dynamics. The paper concludes with directions for future research that will help provide further insights into the development and success of the female mentor (...) – male protégé relationship. (shrink)

Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for research with Indigenous populations. Lack of informed consent can impact on research findings. The Picture Talk Project was initiated with senior Aboriginal leaders of the Fitzroy Valley community situated in the far north of Western Australia. Aboriginal people (...) were interviewed about their understanding and experiences of research and consent processes. Transcripts were analysed using NVivo10 software with an integrated method of inductive and deductive coding and based in grounded theory. Local Aboriginal interpreters validated coding. Major themes were defined and supporting quotes sourced. Interviews with Aboriginal leaders were facilitated by a local Aboriginal Community Navigator who could interpret if necessary and provide cultural guidance. Participants were from all four major local language groups of the Fitzroy Valley; aged 31 years and above; and half were male. Themes emerging from these discussions included Research—finding knowledge; Being respectful of Aboriginal people, Working on country, and Being flexible with time; Working together with good communication; Reciprocity—two-way learning; and Reaching consent. The project revealed how much more there is to be learned about how research with remote Aboriginal communities should be conducted such that it is both culturally respectful and, importantly, meaningful for participants. We identify important elements in community consultation about research and seeking consent. (shrink)

This article investigates the potential of fMRI to test assumptions about different components in models of complex cognitive tasks. If the components of a model can be associated with specific brain regions, one can make predictions for the temporal course of the BOLD response in these regions. An event‐locked procedure is described for dealing with temporal variability and bringing model runs and individual data trials into alignment. Statistical methods for testing the model are described that deal with the scan‐to‐scan correlations (...) in the errors of measurement of the BOLD signal. This approach is illustrated using a “sacrificial” ACT‐R model that involves mapping 6 modules onto 6 brain regions in an experiment from Ravizza, Anderson, and Carter (in press) concerned with equation solving. The model's visual encoding predicted the BOLD response in the fusiform gyrus, its controlled retrieval predicted the BOLD response in the lateral inferior prefrontal cortex, and its subgoal setting predicted the BOLD response in the anterior cingulate cortex. On the other hand, its motor programming failed to predict anticipatory activation in the motor cortex, its representational changes failed to predicted the pattern of activity in the posterior parietal cortex, and its procedural component failed to predict an initial spike in caudate. The results illustrate the power of such data to direct the development of a theory of complex problem solving, both at the level of a specific task model as well as at the level of the cognitive architecture. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole. Invited by local Aboriginal community leaders of the Fitzroy (...) Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted. Focus groups with Aboriginal community members were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley – Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning – milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley. Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge. (shrink)