bluuebunny/crossref_metadata_2025 huggingface dataset:
Secrecy and Transparency
Authors: Phillips John W.P.
Published: January 2012

In this interview Samuel Weber proposes a rethinking of the relation of secrecy to transparency and outlines some of the forms it takes, while considering certain of its implications for current social, political and epistemological contexts. He begins by questioning the opposition itself, suggesting that we will have to learn to be more at home with the secret and that the demand for transparency must be radically rethought and complicated. He argues that the demand for absolute transparency can only promote and obscure the process by which the ‘secret’ is placed in the service of private appropriation. As the emotional experience of the relation between transparency and secrecy reflects the historically specific traditions that constitute the sense of self, then it is that sense that should be ‘opened up to its irreducible heterogeneity’.
Rotation estimation and vanishing point extraction by omnidirectional vision in urban environment
Authors: Bazin Jean-Charles , Demonceaux Cédric , Vasseur Pascal , Kweon Inso
Published: January 2012

Rotation estimation is a fundamental step for various robotic applications such as automatic control of ground/aerial vehicles, motion estimation and 3D reconstruction. However it is now well established that traditional navigation equipments, such as global positioning systems (GPSs) or inertial measurement units (IMUs), suffer from several disadvantages. Hence, some vision-based works have been proposed recently. Whereas interesting results can be obtained, the existing methods have non-negligible limitations such as a difficult feature matching (e.g. repeated textures, blur or illumination changes) and a high computational cost (e.g. analyze in the frequency domain). Moreover, most of them utilize conventional perspective cameras and thus have a limited field of view. In order to overcome these limitations, in this paper we present a novel rotation estimation approach based on the extraction of vanishing points in omnidirectional images. The first advantage is that our rotation estimation is decoupled from the translation computation, which accelerates the execution time and results in a better control solution. This is made possible by our complete framework dedicated to omnidirectional vision, whereas conventional vision has a rotation/translation ambiguity. Second, we propose a top-down approach which maintains the important constraint of vanishing point orthogonality by inverting the problem: instead of performing a difficult line clustering preliminary step, we directly search for the orthogonal vanishing points. Finally, experimental results on various data sets for diverse robotic applications have demonstrated that our novel framework is accurate, robust, maintains the orthogonality of the vanishing points and can run in real-time.
Representative Baseline Values on the Sport Concussion Assessment Tool 2 (SCAT2) in Adolescent Athletes Vary by Gender, Grade, and Concussion History
Authors: Valovich McLeod Tamara C. , Bay R. Curtis , Lam Kenneth C. , Chhabra Anikar
Published: January 2012

Background: To improve and standardize the sideline evaluation of sports-related concussion, the Sport Concussion Assessment Tool 2 (SCAT2) was developed. This tool assesses concussion-related signs and symptoms, cognition, balance, and coordination. This newly published assessment tool has not established representative baseline data on adolescent athletes.

Hypothesis: Representative baseline SCAT2 scores in adolescent athletes will differ by gender, grade in school, and self-reported concussion history.

Study Design: Descriptive epidemiology study.

Methods: Interscholastic athletes were administered the SCAT2 during a preseason concussion baseline testing session. The SCAT2 total score ranges from 0 to 100 points, with lower scores indicating poorer performance. Overall, representative values were calculated using descriptive statistics. Separate independent-samples t tests, with gender and concussion history as the independent variables, and a 1-way analysis of variance, with grade as the independent variable, were conducted to assess differences in SCAT2 total score ( P < .05).

Results: There were 1134 high school athletes (872 male and 262 female) who participated. The SCAT2 total score across all participants was 88.3 ± 6.8 (range, 58-100); skewness was −0.86 ± 0.07, and kurtosis was 0.73 ± 0.14. Male athletes scored significantly lower on the SCAT2 total score ( P = .03; 87.7 ± 6.8 vs 88.7 ± 6.8), and 9th graders (86.9 ± 6.8) scored significantly lower than 11th (88.7 ± 7.0) and 12th (89.0 ± 6.6) graders ( P < .001). Athletes with a self-reported concussion history scored significantly lower on the SCAT2 total score than those with no concussion history ( P < .001; 87.0 ± 6.8 vs 88.7 ± 6.5).

Conclusion: These data provide representative scores on the SCAT2 in adolescent athletes and show that male athletes, 9th graders, and those with a self-reported concussion history scored significantly lower than their female, upperclassmen, or nonconcussed peers.

Clinical Relevance: These results suggest that healthy adolescent athletes display variability on the SCAT2 at baseline. Therefore, clinicians should administer baseline assessments of the SCAT2 because assuming a perfect baseline score of 100 points is not appropriate in an adolescent athlete population.
The deadlock of Husserl’s life-world: From a critique of psychologism to psychologization
Authors: De Vos Jan
Published: January 2012

Edmund Husserl’s seminal work The Crisis of European Sciences and Transcendental Phenomenology: An Introduction to Phenomenological Philosophy deals extensively with psychology. He even titled his Prague lecture of November 1935—which served as the basis of the book— The Crisis of European Sciences and Psychology. Husserl’s work is undoubtedly one of the most important critical assessments of psychology. Husserl criticized not only psychology’s methods (i.e., for mimicking the hard sciences), but also the very place of the discipline. His argument can be condensed as follows: the objectivization of science engendered a problematic subjectivity which, in turn, created a need for a psychology. The very paradox of this, viewed from the perspective of the interwar period, led Husserl to declare a crisis of the sciences and, especially, of psychology. Surprisingly, until now Husserl’s critique and defiance have been rarely discussed within the psy-sciences. This paper aims to reopen the debate, beginning with the concept of the life-world, the main concept developed in Crisis. However, as will be argued, that very concept is also the place where Husserl refrains from a radical critique of psychology and where his supposed phenomenological vantage point eventually facilitates the transition from psychologism to psychologization.
Familial SLE: sustained drug-free remission in a mother successfully treated for anal cancer, but development of SLE in a 16-year old daughter
Authors: Catania G , Rossi E , Marmont A
Published: January 2012

The immunopathogenesis of systemic lupus erythematosus has been thoroughly investigated recently, and genome-wide association studies have identified genes statistically associated with lupus. However, the progression to overt disease is dependent on the activation of environmental factors (‘triggers’), among which oestrogen stimulation is prominent. Here we report the case of a mother with long-standing SLE entering into long term drug-free remission following intensive, menopause-inducing chemoradiotherapy for cancer, and the opposite case of her daughter, who developed SLE following the initiation of her menstrual cycle.
Segregation by Design
Authors: Vesselinov Elena
Published: January 2012

Gated communities have been thought to contribute to urban inequality, but empirical evidence is limited. This study utilizes the American Housing Survey for 2001 to examine the differential access of Latinos and Whites to gated communities in metropolitan United States. The results show that education is the most important sorting mechanism: as education increases, so does the probability to gate. On one hand, education trumps the effects of social class for owners, leading to segmentation within each class category, regardless of race/ethnicity; on the other hand, Latinos with higher education tend to select gated residences more often than comparable Whites.
Slowly progressive lymphohistiocytic meningoencephalomyelitis in 21 adult cats presenting with peculiar neurological signs
Authors: De Risio Luisa , Brown Richard , Tennant Bryn , Sparkes Andy , Matiasek Lara , de Stefani Alberta , Weissenböck Herbert , Matiasek Kaspar
Published: January 2012

Twenty-one cats presented with a history of slowly progressive neurological signs characterised by a stiff extended tail, behavioural changes, and spastic and ataxic gait. All cats had outdoor access and lived in the same geographical rural area in north-east Scotland. Histological findings were consistent with lymphohistiocytic meningoencephalomyelitis. Immunohistochemistry ruled out 15 pathogens and showed a significant expression of the interferon-inducible Mx protein, suggesting an as yet unidentified infective or environmental immunogenic trigger as the possible causative agent. The late age at onset (mean 9 years), the very slow progression of clinical signs (mean 11 months) and the peculiar clinical presentation (particularly the posture of the tail) have not been reported previously in cats with lymphohistiocytic meningoencephalomyelitis.
Understanding the learning process of peer feedback activity: An ethnographic study of Exploratory Practice
Authors: Zheng Chunxian
Published: January 2012

This ethnographic study attempts to find, reveal and understand the learning possibilities, from the social learning perspective, in the process of peer feedback activity in a College English classroom for non-English majors in China. The study reveals the nature of Exploratory Practice (EP), and the investigation is guided by EP principles, aiming at exploring the viability of the practice in this specific teaching and learning context. Through classroom observation, discourse analysis, discussion, interviews and drafts of students’ writing, the study finds five group cooperative patterns, represented by the five patterns of discursive interaction: collaborative, expert–novice, dominant–dominant, dominant–passive and passive–passive. Wherein the former two patterns witness the obvious reciprocal nature, the latter three seem not to. The subsequent classroom discussion reveals a general conformability of the teacher and students’ understanding of the virtues and problems of the activity, and the broadening of the teacher’s understanding in this social process. Meanwhile through discussion and interview, the practitioners reached a consensus that the teacher’s tutoring is necessary to turn the problems into possible learning opportunities where the learners act as the learning agents. The study also discussed the possible ways of the teacher’s tutoring in the activity in a specific context.
Critical Pragmatism
Authors: Midtgarden Torjus
Published: January 2012

Scholars like Alison Kadlec, Melvin Rogers and R.W. Hildreth have recently confronted the claim that Dewey’s pragmatism lacks resources to approach issues of power, but they have not given a unified account of what theoretical framework Dewey’s pragmatism provides to grapple with such issues and to articulate standards for social criticism. In this article, I explore one such framework: Dewey’s outline of a social philosophy developed in his Lectures in China. Here, Dewey derives immanent standards for social criticism through sociological and historical perspectives. Such standards are articulated in terms of social relationships of mutuality and recognition in and between groups; on such standards, social institutions and practices are to be criticized in so far as they embody relationships of domination disabling individual development and social and political participation. Dewey’s critical project extends to cultural sources of normative authority, and I further explore his social philosophy in terms of an ‘immanent cultural criticism’.
The spectacular and the sacred: narrating landscape in works of travel
Authors: Keighren Innes M. , Withers Charles W. J.
Published: January 2012

This article – drawing upon the archives of the London publisher John Murray – addresses the narration of landscape in 19th century printed accounts of travel and exploration. The geological work of the earth scientist Charles Lyell, and the textual and cartographic investigations of the scriptural geographer Edward Robinson, are used to examine the construction of narrative as a question of inscriptive practice, rhetorical desideratum, and interpretative strategy. We show how, with specific audiences and purposes in mind, and with Murray’s redactorial influence at heart, Lyell and Robinson cast their accounts in particular ways in order to satisfy expectations of scientific rigour, literary form, authorial credibility, and bodily encounter. The accounts – one by a scientist facing revelation in nature’s wonder, the other and by a theologian reading landscape scientifically in order to ‘prove’ scriptural truth – contribute to our understanding of the geographical dimensions of the relationships between science and religion in the 19th century. In addressing the complex connections linking author, publisher, and audience in the production of landscape narratives, the paper highlights the importance of epistemological matters in examining the making of geographical narrative, addresses the value of publisher’s archives in geographical research and illustrates how and why authors (and publishers) chose to put their written accounts to order in the ways they did.
Making sense of transience: an anticipatory history
Authors: DeSilvey Caitlin
Published: January 2012

In climate change discourse the concept of anticipatory adaptation has emerged to refer to proactive strategies for preparing communities for future change. This paper makes a proposal for what might be called anticipatory history. At designated heritage sites prevailing narratives tend to project long-term conservation indefinitely forward into the future. These narrative formulations fall short when confronted with the impending transformation, or even disappearance, of landscapes and artefacts of cultural heritage – a process that is likely to become increasingly common with the acceleration of environmental change in coastal and other contexts. Might it be possible to experiment with other ways of storying landscape, framing histories around movement rather than stasis, and drawing connections between past dynamism and future process? At the core of this paper is an experimental narration of the history of a Cornish harbour. The narrative presents a reverse chronology of moments gleaned from diverse sources ranging over three centuries, looking to a fractured landscape past to find resources for encountering a future unmaking.
Enclosure stories: narratives from Northamptonshire
Authors: McDonagh Briony , Daniels Stephen
Published: January 2012

This paper rethinks and revises enclosure narratives, thickening the concept of enclosure by researching a particular place and period: the English Midland county of Northamptonshire in the period between the 16th and the 19th centuries. It argues that while many elements of the landscape were dramatically reshaped by enclosure, the parliamentary enclosures of the late 18th and early 19th centuries were nevertheless part of a much longer process of landscape change. The paper points to the complexities within enclosure thought and experience, drawing particular attention to individuals and groups – including female landowners, ordinary villagers and animals – too often entirely written out of the ‘enclosure story’.
Optimization of colour quality of LED lighting with reference to memory colours
Authors: Smet KAG , Ryckaert WR , Pointer MR , Deconinck G , Hanselaer P
Published: January 2012

Simulated and real tri- and tetrachromatic light-emitting-diode (LED) clusters were optimized for luminous efficacy of radiation (LER) and the memory colour quality metric developed by the authors. The simulated clusters showed no significant differences in achievable colour quality and LER between the different cluster types investigated. The real clusters (composed of commercially available LEDs) showed substantial differences in achievable colour quality and LER between the different cluster types investigated. The real clusters also exhibited a large drop in LER and memory colour quality compared to the simulated clusters due to the limited range of available peak wavelengths and spectral halfwidths. A real tetrachromatic LED lamp, constructed with commercial red, green, blue and warm white LEDs, was optimized for LER and colour quality. In a psychophysical experiment, several aspects of the colour quality of the LED lamp (optimized for 2700 K) and an incandescent lamp were assessed by 18 observers. The visual appreciation (in terms of attractiveness, preference, and memory colour similarity) of the LED lamp was rated significantly higher than the incandescent lamp.
Proposed UK guidance for lighting in residential roads
Authors: Fotios S , Goodman T
Published: January 2012

This paper reports a proposed new system for specifying illuminances and lamp types for equal visual effects at mesopic illuminances, developed within the mesopic lighting panel of the Institution of Lighting Professionals in the UK. This study is applied in residential streets and thus the visual tasks considered are those relevant for pedestrians. It is proposed that the benchmark lamp for residential streets in the UK is the low-pressure sodium lamp; if other types of lamps are used, and these have a CIE General Colour Rendering Index of Ra ≥ 60, then the average illuminance can be reduced by an amount that is determined using the new CIE system for mesopic photometry and is dependent on the scotopic/photopic ratio of the lamp.
University Research Ethics Committees — A Summary of Research into Their Role, Remit and Conduct
Authors: Tinker Anthea , Coomber Vera
Published: January 2012

As society becomes more aware of the rights of individuals, ethical issues become of increasing importance. Many research funders, including the research councils, increasingly emphasise research governance and ethical review in their consideration of submitted proposals. Little is known, however, about what universities do over ethical scrutiny and in order to find out the authors undertook a national study of all universities in the United Kingdom. The focus of the study was on human volunteers for research outside the remit of the National Health Service. The key questions being: to what extent do universities undertake ethical scrutiny of research and, if so, how?

The broad conclusion is that when this survey was carried out in the autumn of 2003, the majority of universities were aware of the need for the ethical scrutiny of research on human subjects although in many of those universities the scrutiny system was being developed at the time of completion of the questionnaire. In some cases practice appeared to lag behind awareness and whilst there were some very good examples there were also some which were below an ‘acceptable’ standard. Recommendations are made concerning structures, coverage and membership for systems of ethical scrutiny within the university sector.
Guinea Pig Duties: 1. The Need for Clinical Research
Authors: Steiner T.J.
Published: January 2012

If patients are to be partners rather than subjects, contributing effectively to clinical research in which they have an interest, both they and investigators must change their ways. The case is argued here that the conduct of clinical research fulfils an essential need of society and that, therefore, in the interests of society, there is a moral imperative that it be done. Further essays will develop this theme, questioning along the way whether consent is a redundant concept.
The Recruitment and Retention of Members of Black and other Ethnic Minority Groups to NHS Research Ethics Committees in the United Kingdom
Authors: Gbolade Babatunde A.
Published: January 2012

The publication ‘Governance arrangements for NHS Research Ethics Committees’ is clear in its recommendations about the composition of National Health Service research ethics committees in the United Kingdom. It highlights the need for a sufficiently broad range of experience and expertise, balanced age and gender distribution and every effort to be made to recruit members from black and ethnic minority backgrounds, as well as people with disabilities. It was considered that this composition would make it possible for the scientific, clinical and methodological aspects of a research proposal to be reconciled with the welfare of research participants, and with broader ethical implications. Black and other ethnic minorities constitute 7.9 per cent of the UK population. Ideally, in any research ethics committee with a maximum of 18 members, at least one would be a member of the black or other ethnic minority groups. However, this does not appear to be the case; some committees having more than one, while most do not have any. This paper looks at the present position and suggests ways of improving recruitment and retention of members of these groups.
Research Ethics in Criminology
Authors: Johnstone Gerry
Published: January 2012

This paper provides a brief but critical review of current thinking and debate about research ethics in criminology; it falls into two parts. The first part of the paper describes the sorts of ethical issues that tend to be flagged up in ‘textbook’ accounts of ethics in criminological research; some recent efforts to devise codes of ethics for researchers in criminology; and developments in what might be termed the ‘ethical policing’ of social research. The second part briefly sketches some deeper issues to do with the ethics of research with ‘deviant subjects’. It suggests, in particular, that the ethical issues faced by criminological researchers cannot be ‘read off’ from a medical model of research. This, however, is not due simply to the greater use of qualitative methods of research in criminology. Rather, it is due to the distinctive political and ethical terrain occupied by criminology, which is significantly different to that occupied by medical research.
Informed Consent: Is it Sacrosanct?
Authors: Assiter Alison
Published: January 2012

Following Alder Hey and the earlier and much more extreme practices at Nuremberg, legislation has been developed governing the practice of medical ethics and research involving human participants more generally.

In the medical context, relevant legislation includes GMC guidance, which states that disclosure of identifiable patient information without consent, for research purposes, is not acceptable unless it is justified in the public interest. There is a presumption, in other words, in favour of the view that patient consent ought to be obtained before any piece of research is conducted. The Data Protection Act, furthermore, requires informed consent to be given before any use of identifiable personal data is made for any purpose. Moreover, ensuring that the informed consent of participants is gained is common practice on most research ethics committees.

I argue, in this paper, that applying the principle of ‘informed consent’ too mechanistically in the research ethics context risks undermining the very principle it is designed to support – the principle of autonomy. This issue has been much discussed in medical ethics but not so much, so far, in the research ethics context. It will be argued that a more discerning and a less rigid and mechanistic approach, applied by research ethics committees, may help ensure that ethical issues are properly considered.
Guidelines for Ethical Review of Qualitative Research
Authors: Walker J. , Holloway I. , Wheeler S.
Published: January 2012

In recognition of the important ethical issues posed by qualitative research in health care, the authors present key questions to aid ethical review. The purpose is to assist lay and professional members of research ethics committees in their assessment of applications involving qualitative research methods and to inform researchers intending to submit such applications for ethical approval. For the benefit of those less familiar with this type of research, the authors include an overview of different types of qualitative research, together with an explanation of terms commonly used by qualitative researchers.
Ethical Issues in In-House Research
Authors: McGee Paula
Published: January 2012

Researching one's patients, colleagues or students poses a number of challenges for researchers. The example below highlights some of the assumptions that practitioners may make and the pitfalls that researchers may encounter.
The Recruitment and Role of Lay Members
Authors: Legood Giles
Published: January 2012

The use of lay members on research ethics committees has for some time been felt to be an example of good practice in ethical review processes. In this paper, written by a lay member, the author considers what the recruitment process for lay members might be and argues how this process should largely be shaped by what role the lay member is recruited to undertake. In considering the advantages and disadvantages of lay members, the author shows that defining the role of a lay member is not straightforward but is necessary to the good working of a research ethics committee.
Meaningful Consent to Participate in Social Research on the Part of People under the Age of Eighteen
Authors: Williams Brian
Published: January 2012

This article describes changes in conventions among social scientists undertaking research with children and young people over the last decade, and discusses the legal position and aspects of the ethics of research with people under eighteen. It includes three brief case examples which illustrate the nature of the issues involved and ethics committees' responses to them, and concludes that although differences of opinion remain, a consensus is emerging about the need to let young people speak for themselves, subject to appropriate safeguards.
An Alternative University-Wide Model for the Ethical Review of Human Subject Research
Authors: Hunter David
Published: January 2012

This paper is, in part, a response to the model of university-based human subjects ethics review described by Bryn Williams-Jones and Soren Holm in Research Ethics Review [1] and the current ethical review process at the University of Ulster [2]. In this paper the two predominant systems of ethical review within UK universities are described. It is argued that each of these systems has significant deficiencies. Having suggested why these two models are less than ideal, a “third way’ of ethical review is proposed that encapsulates the strengths of these two models while avoiding the weaknesses.
Evidence-Based Medicine Or Opinion-Based Medicine?
Authors: Morice Alyn H
Published: January 2012

The basis for ‘sound’ medical opinion has moved from clinical opinion to evidence based research. This article will comment on the basis on which evidence in clinical medicine is collected and, indeed, what actually constitutes evidence. It is suggested that the definition of guidelines arising from evidence-based medicine may lead to false conclusion and, as noted by Sir Douglas Black, whilst ‘guidelines can of course be helpful in clear-cut situations; [but] these are the minority in actual practice’.
Introducing the Concept of the Research Governance ‘Ratchet’
Authors: Pothier David D
Published: January 2012

Ensuring that research is of high quality and is based on sound ethical principles is not easy; it requires a fine balance between adequate oversight and suitable facilitation. The current state of research ethics governance is an ideal environment to maintain a governance ‘ratchet’ rather than produce a well-organized and carefully thought out ‘dial’.
Clinical Research Fraud
Authors: Barrett Jane
Published: January 2012

Fraud is often coupled with misconduct and the two are certainly related; fraud by definition is misconduct, but not all misconduct is fraud. Fraud always contains intent whilst misconduct covers a wide range of activities, from carelessness, right through to deliberate deception. It is vitally important that fraud and misconduct, once suspected, are reported and fully investigated. But unless everyone involved in research at any level accepts the possibility that fraud exists, there will still be research fraud, and patients will continue to be abused and put at risk.
Is it Time to Return to the ‘Gold Standard’ of Self-Experimentation?
Authors: Humphreys Stephen
Published: January 2012

The novel nature of certain investigational medicinal products may indicate that someone particularly knowledgeable about the risks involved should be the ‘first-in-man’ subject. Such self-experimentation has a noble and ethical heritage, and whilst its practice has declined of late it is perhaps timely to reconsider this situation.
Ethics Review in Norway: Psychologists and Psychology Projects
Authors: Dalen Knut
Published: January 2012

In Norway, research ethics committees in medicine are organized as interdisciplinary regional committees. Since 1999, Norway requires that one member of each ethics committee be a psychologist. Competence in psychology is considered relevant not only when evaluating psychology projects. As discussed in this article, a competence in psychology is also relevant for evaluating a number of issues common to all research involving human subjects as well as in the evaluation of protocols where other professionals have employed psychological methodologies.
COREC Model Information: Can Patients Read What COREC Wants Us to Give Them?
Authors: Pothier David D. , Nankivell Paul , Bredenkamp Corné-Louise
Published: January 2012

For a patient to make an informed decision about participation in research, it is fundamental that they can understand what is involved. COREC has produced a model information sheet and consent form that researchers are encouraged and sometimes forced to use by LRECs. By applying readability statistics to these documents we have shown that the majority of the UK population would not be able to read this proposed text.
Consent in School-Based Research Involving Children and Young People: A Survey of Research from Systematic Reviews
Authors: Rees R.W. , Garcia J. , Oakley A.
Published: January 2012

This study examines the way that consent is reported for participation in school-based research involving children or young people aged from 5 to 16 years. Databases containing descriptions of research identified during systematic reviews were surveyed to determine to what extent consent is sought, and from whom, and to see whether reporting varied by study characteristics such as the age of participants, the country in which the research was carried out, research design and substantive area of study.

Of a total of 489 studies in school settings involving children or young people, less than a third (n=145:30%) reported seeking consent. Only one in seven (n=66:13%) sought consent from children or young people themselves. Consent was reported significantly more frequently in studies sourced from health promotion reviews, when compared to those sourced from education reviews.

Codes of practice indicate that researchers should seek consent from research participants. This study demonstrates that these principles are often not reflected in practice.
Drip-Feeding: How the Pharmaceutical Industry Influences Research Ethics Committees
Authors: Humphreys Stephen
Published: January 2012

Whilst research ethics committees (RECs) exist to represent society's interests by placing appropriate checks on the economic power of ‘big pharma’, the political sphere is here seen to have generally acquiesced to economic interests and allowed industry to influence how it is regulated. RECs are accordingly urged to remain vigilant about the prospects of their being the subject of hidden influences.
Ethnographic Research in Closed Institutions: Ethical Issues
Authors: Hubert Jane , Hollins Sheila
Published: January 2012

This paper discusses a number of ethical issues that arise in the context of ethnographic research with people with severe intellectual disabilities and mental health problems living in closed institutions. These very vulnerable people have tended to live emotionally and physically deprived lives in segregated and bleak environments, and because they cannot communicate through speech, and often have seriously challenging behaviour, they have tended to become socially and physically isolated from society.

Most research with people who do not communicate verbally has been quantitative, or conducted through informal and formal carers. Ethnographic research, on the other hand, involves spending long periods of participant observation with people in their ‘natural’ settings, providing intensely qualitative material, in order to present data as far as possible from each individual's perspective. Such research provides rich and emotionally powerful material which is often distressing and even shocking. This raises a number of ethical issues in relation to the conduct of such research, including questions regarding consent – who can give consent for someone who does not have the capacity to give consent themselves? The ethics of publication of such research are also discussed. This paper outlines the reasons why such research, and its publication, is vital for the futures of institutionalized men and women with severe intellectual disabilities.
The Lay Member in the Research Ethics Committee: A Reply to Green
Authors: Parker C.
Published: January 2012

This paper seeks to clarify the process of ethical review primarily through a consideration of the lay member's role; it considers some of the conventional accounts of the role and portrays weaknesses in them. Its positive account places the ethical review service in a wide political context allowing the definition of lay member as a politically-positioned individual in the REC with the function of formally representing the public standards of morality in the medical research context.
The Reporting of Informed Consent and Related Issues in Critical-Care Research
Authors: Berger Jeffrey T. , Khalil Edward , Khan Samar , Varghese Tony
Published: January 2012

Background: Previous studies have found lapses in ethical safeguards for subjects of critical-care research.

Objective: To assess recently published empiric critical-care research conducted in the United States for the reporting of research protections as they relate to informed consent and surrogate decision-making. Methods: Systematic review of a sample of empiric critical-care research studies published between 2000 and 2004.

Results: Of 51 studies reviewed, consent was reported as having been obtained in 44. Assessment of subjects' decision-making capacity was noted in 35% of studies. Assessments of subjects' capacity was less likely to be reported in studies in which researchers accepted consent from either subjects or from third parties, compared to studies with only subjects' consent (P=0.042). Five studies did not report securing Institutional Review Board approval.

Conclusion: Lapses in the reporting of critical-care research are prevalent.
Ethical Issues and Their Practical Application in Researching Mental Health and Social Care Needs with Forced Migrants
Authors: Palmer David
Published: January 2012

There is a growing interest in researching the plight, health, and social care needs of forced migrants and the complex ethical issues related to researching this vulnerable group. Conducting health and social care research with forced migrants is a sensitive and complex issue and can place emotional demands on contributors, requiring high ethical and moral standards which safeguard participants, researchers and the integrity of the study. Researchers and those who review research need to be sensitive to the needs, privacy and fears of participants. In addition to the medical and personal benefits that can be obtained from undertaking research with forced migrants, there comes the risk of stigmatization, exploitation and harm. This paper identifies some, but by no means all, key ethical issues confronting researchers, these dilemmas include the complex issues of language and translation, immigration status, contextual issues, lack of familiarity with the research process, issues of informed consent and safeguarding anonymity. Confidentiality, sensitivity to cultural traditions and values, and avoiding re-traumatization also need to be considered as this knowledge can minimize research risks and protect the rights and welfare of research participants. This paper will draw upon experience of working with refugees and asylum seekers for many years and from experience gained from small-scale qualitative research undertaken with Somali and Ethiopian forced migrants. It argues for the need for a consistent, robust, ethical framework to ensure that the ‘researcher’ does not inadvertently ‘do harm’ by infringing on the security, privacy and well-being of the subjects of the research. This paper in turn adds to the knowledge base on good practice and research ethics and is hoped that it will provide useful guidance for those undertaking the ethical review for this type of research.
The Membership and Function of the Research Ethics Committee
Authors: Parker Colin
Published: January 2012

This paper focuses on the REC and its political context to clarify the process of ethical review. The examples initially considered are taken from a Research Ethics Review editorial to develop the social explanation of the membership and function of a research ethics committee. It is suggested that the management and administration of medical matters are not always best understood solely in medical terms. The conclusion of the paper is that the larger political relationships determine the membership and function of the research ethics committee. The REC is defined as the political mechanism for formally socializing medical research and its lay members as similarly socializing the REC.
Sharing Research Data and Confidentiality: Restrictions Caused by Deficient Consent Forms
Authors: Van Den Eynden Veerle
Published: January 2012

Deficiencies or unclear statements in consent forms used for research with human participants may lead to publicly-funded research data being unsuitable for sharing with other researchers. Long-term data use is encouraged or required by many of the UK research councils and other funding bodies. Researchers may fail to address long-term use and sharing of data when obtaining informed consent and when arranging to keep data obtained from participants confidential. Sharing data should not compromise confidentiality if care is taken to anonymize information where this is needed or has been explicitly requested. Whilst researchers should consider all potential uses of their research data in confidentiality and consent agreements, research ethics committees can provide better guidance by pointing out to researchers that long-term use, preservation and sharing of research data should be taken into account when informing participants and obtaining their consent.
The Ethics of Complementary Medicine
Authors: Lewith George T. , Young Teresa
Published: January 2012

Complementary and alternative medicine (CAM) research presents unique problems for research ethics committees which must be considered in some detail. Applying conventional research techniques to CAM raises a number of issues which ethics committees may find challenging. CAM is widely available and this will have a substantial effect on any proposed research strategy as so many individuals will have pre-existing opinions about these treatments. Whilst many complementary therapies may eventually be ‘validated’ by appropriate clinical trial methodologies other research methods could be more appropriate in the early stages of a research strategy, particularly in view of the widespread availability in both the public and private sectors. Safety, efficacy, cost-effectiveness and patient preference also need evaluation; and these cannot be adequately assessed through double blind randomised placebo controlled trials. If the research question is clear, then thoughtful and often innovative evaluative processes can be designed to answer the socially and clinically relevant issues posed by this area of medicine. There are a number of agencies and organizations available to offer advice to ethics committees in this newly emerging field of CAM research including CAM Strategy Research and Development (CAM STRAND), the Foundation for Integrated Health (FIH) and the Research Council for Complementary Medicine (RCCM).
Does Researchers' Attendance at Meetings Affect the Initial Opinions of Research Ethics Committees?
Authors: Heasman Peter , Preshaw Philip , Gray Janine
Published: January 2012

The current practice for UK Research Ethics Committees is to invite researchers to attend meetings at which their applications are to be considered and the National Research Ethics Service strongly recommends researchers to attend. There are no available data, however, to substantiate the value of researchers' attendance and particularly on the extent to which their attendance may influence the initial decision of the committee. This study attempts to address whether it is in the researchers' interest to commit substantial time and resource to attend a REC meeting through using the REC decision on the research proposal as the main outcome measure.
Ethical Issues in Researching People Living on the Streets: A Commentary
Authors: McGee Paula
Published: January 2012

This study appeared in full in the last issue of Research Ethics Review (2008; 4 (1): 30). AJ has been commissioned to investigate ways to improve access to health services by homeless people living on the streets. She plans to use a series of focus groups to survey homeless people's views and experiences and has formed links with a number of voluntary organizations that provide services for street dwellers. She has been advised that to help empower homeless people to make changes in their lives, those who take part in projects are usually offered a small sum, £5.00, as a way of indicating that their time is considered valuable. It has been recommended that AJ does the same.
Guide, Guide Thyself: Law and Order in Clinical Research
Authors: Laurence Desmond R.
Published: January 2012

The temptation in clinical research to sacrifice the interests, the health, and sometimes even the lives of research subjects to the advancement of the interests of science and society, and to the advancement of researchers' own careers, is a hardy weed which can grow anywhere. Pursuant to a commendable EU Directive a new law, the Medicines for Human Use (Clinical Trials) Regulations 2004 was brought into effect in the UK. That law makes it illegal for anyone to start a clinical trial unless a Research Ethics Committee has expressed a favourable opinion upon its protocol. It gives to Research Ethics Committee members the legal power, and imposes upon them the legal duty, to protect research subjects from those who have strong financial and other temptations to mistreat them. The new law specifies what standard of protection the Research Ethics Committee members shall insist upon. The Royal College of Physicians, which has been reluctant to declare its own conflicting interests, in 2007 issued some guidelines which it hopes Research Ethics Committee members will follow. Those Guidelines on the practice of ethics committees in medical research with human participants urge Research Ethics Committee members to express a favourable opinion of clinical trials which they believe, for example, do not give to research subjects the protection the new law demands. But Research Ethics Committee members have a clear legal duty not to follow any course of conduct calculated to subvert the excellent and necessary 2004 law.
At the Genesis of a Research Idea: Defending and Defining a Duty Prior to Ethics Review
Authors: Denscombe Martyn , Dingwall Gavin , Hillier Tim
Published: January 2012

This article challenges the assumption inherent in many ethics codes that duties only arise when the project is sufficiently advanced that a formal research proposal can be put before an ethics committee for approval. Certain social science methodologies do not lend themselves to a simple demarcation between the preparation and the implementation of the research. It is therefore imperative that consideration is given to researchers' ethical duties prior to formal review. The problem of demarcation and of defining a duty are explored in the particular context of a potential research project involving research on taxi-drivers' experiences of crime and the strategies that they employ to avoid victimisation. Two key issues emerge. First, in what circumstances, if any, can information supplied during this gestation period be used as ‘research data’? Secondly, there are concerns about the researcher's identity and role at this stage. These issues, and others, need to be the subject of further consideration by the relevant bodies so that researchers receive meaningful guidance on the duty prior to ethics review.
Written Consent: Sometimes More Trouble than it is Worth?
Authors: Pothier David D
Published: January 2012

Informed consent is crucial in most research but written consent is not without its drawbacks. Written consent serves to protect the researcher more than it serves to protect the participant and this can present a barrier to their relationship. In certain circumstances it can undermine the trust important in research. For ‘simple’ studies, where treatments are largely interchangeable or where consent is implied, written consent can be considered not only to be unnecessary, but actually harmful. Research ethics committees should consider removing the requirement for written consent in these studies.
Trials and Treatments: Some Reflections on Informed Consent and the Role of Research Ethics Committees
Authors: Ames Janet , Thurston Miranda
Published: January 2012

Informed by interviews conducted with members of a local research ethics committee (REC), this article reflects upon how RECs can act to improve the quality of patient consent to clinical trials. Two emergent narratives which trial participants have drawn upon to account for their experiences are explored: the narrative of the clinical trial itself and a narrative of individualized treatment. Informed consent requires participants to recognize that only the first of these narratives is relevant to the design, and their experience, of randomized controlled trials. Improving the clarity of patient information is argued to be a relevant, but insufficient, strategy for increasing patient familiarity with the methodology of clinical trials. In the concluding sections of the article, other approaches, and the role of RECs, are considered.
Illegality in the Research Protocol: The Duty of Research Ethics Committees under the 2001 Clinical Trials Directive
Authors: Roy-Toole Christopher
Published: January 2012

In this paper, the author shows how research ethics committees must deal with illegality in the research protocol. He defines their legal duty by reference to the 2001 Clinical Trials Directive, and especially in the key areas of insurance, indemnity and no-fault compensation. The author is critical of the current GAfREC and recent guidelines issued by the Royal College of Physicians. He concludes that new rules are needed to replace the 2001 edition of GAfREC.