Ethics masterclass programme

The Department of Children and Youth Affairs (DCYA) recently launched ‘Guidance for developing ethical research projects involving children’. The Guidance considers ethical principles and concepts in research with children and presents a checklist for the design and conduct of research.  In this the third master class of the Children's Research Network for Ireland and Northern Ireland, participants will have an opportunity to respond to the Guidance and to discuss ethical issues in their work. The workshop will also provide participants with the opportunity to discuss the challenges facing the community and voluntary sector in applying and monitoring ethical standards in their work in the absence of formal/institutional ethics committees

FLYER: Ethics, Consent and Participation in Research With Children and Young People

  Date: Friday, 14 June 2013   Time:10:30 – 13.30 Location: G13, Western Gateway Building, University College Cork The children's Research Network for Ireland and Northern Ireland in conjunction with the Children and Young People Research Cluster at the Institute for Social Sciences in the 21st Century at UCC are holding a workshop on ethics, consent and participation in research with children and young people. The event will explore some of the complex ethical issues involved in conducting research with children and young people, from the perspectives of researchers, children, families and service-providers.  

Guide for World Class Commissioners Promoting Health and Well-being: Reducing Inequalities

One of the core missions of commissioners is to reduce health inequalities. Promoting health and well-being is necessary but not sufficient, and it is essential thatimprovements in commissioning and consequent improvements in service delivery, will not widen the gapbetween different groups in society. It is, of course,already difficult enough to decide how to commission services to promote health and well-being. There are practical, economic and ethical issues involved, but if in addition the commissioner wishes to ensure that the gap between the most healthy and the least healthy does not widen, they will have to think hard and commission carefully. It is also crystal clear that it would be wrong to let 152 Primary Care Trusts find out for themselves how to do this. Firstly, it would be a massive waste of resources, and secondly, many Primary Care Trusts would be unable to deliver. This Guide has been produced by knowledge harvesting; by gathering the knowledge that commissioners have created and accrued, about successes as well as failures; and blending it into a single readable Guide.

Autologous adult cortical cell transplantation enhances functional recovery following unilateral lesion of motor cortex in primates: a pilot study.

BACKGROUND:: Although cell therapy is a promising approach after cerebral cortex lesion, few studies assess quantitatively its behavioral gain in non-human primates. Furthermore, implantations of fetal grafts of exogenous stem cells are limited by safety and ethical issues. OBJECTIVE:: To test in non-human primates the transplantation of autologous adult neural progenitor cortical cells with assessment of functional outcome. METHODS:: Seven adult macaque monkeys were trained to perform a manual dexterity task, before the hand representation in motor cortex was chemically lesioned unilaterally. Five monkeys were used as control, compared to two monkeys subjected to different autologous cells transplantation protocols performed at different time intervals. RESULTS:: After lesion, there was a complete loss of manual dexterity in the contralesional hand. The five "control" monkeys recovered progressively and spontaneously part of their manual dexterity, reaching a unique and definitive plateau of recovery, ranging from 38% to 98% of pre-lesion score after 10 to 120 days. The two "treated" monkeys reached a first spontaneous recovery plateau at about 25 and 40 days post-lesion, representing 35% and 61% of the pre-lesion performance, respectively. In contrast to the controls, a second recovery plateau took place 2-3 months after cell transplantation, corresponding to an additional enhancement of functional recovery, representing 24 and 37% improvement, respectively. CONCLUSIONS:: These pilot data, derived from two monkeys treated differently, suggest that, in the present experimental conditions, autologous adult brain progenitor cell transplantation in non-human primate is safe and promotes enhancement of functional recovery.

Endocarditis prophylaxis revisited: experimental evidence of efficacy and new Swiss recommendations. Swiss Working Group for Endocarditis Prophylaxis.

Because of its severity, it is agreed that infectious endocarditis should be prevented whenever possible. Determining adequate prophylactic measures involves establishing (a) the patients at risk, (b) the procedures that might provoke bacteraemia, (c) the most effective prophylactic regimen, and (d) a balance between the risks of side effects from prophylaxis and of developing infectious endocarditis. Patients at risk and procedures inducing bacteraemia have been identified by clinical studies. On the other hand, the efficacy of prophylactic antibiotics has been based on animal studies. Randomised, placebo-controlled studies do not exist in humans because they would require large patient numbers and would raise ethical issues due to the severity of the disease. Case-control studies have indicated that infectious endocarditis prophylaxis is effective, but prevents only a limited number of cases. Animal experiments have revealed several key issues for human application. First, antibiotics do not prevent the early stages of valve colonisation, but rather kill the microorganisms after their attachment to the cardiac lesions. Second, the duration of antibiotic presence in the serum is critical. Under experimental conditions, the drugs must remain above their minimal inhibitory concentration for the organisms for > or = 10 h, to allow time for bacterial clearance from the valves. Third, antibiotic-induced killing is not the only mechanism allowing bacterial clearance. Other factors, such as platelet microbicidal proteins, may act in concert with the drugs to sterilise the lesions. Recommendations for prophylaxis have recently been revised in Europe and the USA. New information has improved the definition of groups at risk. Since most cases of infectious endocarditis are not preceded by medical procedures, primary prevention of infectious endocarditis should target infected foci responsible for spontaneous bacteraemia (e.g. poor dental hygiene). The purpose of this article is to update the existing recommendations in Switzerland, under the perspective of changing epidemiology, the availability of new drugs, and harmonisation with recommendations in other countries.

The ethics of creative accounting

The term 'creative accounting' can be defined in a number ofways. Initially we will offer this definition: 'a processwhereby accountants use their knowledge of accounting rulesto manipulate the figures reported in the accounts of abusiness'.To investigate the ethical issues raised by creativeaccounting we will:- Explore some definitions of creative accounting.- Consider the various ways in which creative accounting can be undertaken.- Explore the range of reasons for a company's directors to engage in creative accounting.- Review the ethical issues that arise in creative accounting.- Report on surveys of auditors' perceptions of creative accounting in the UK, Spain and New Zealand.

Ethics and adolescent care: an international perspective.

PURPOSE OF REVIEW: This update reviews the concepts underlying ethical issues in various contexts and countries, highlighting the evolution in the use of the core values underpinning the field and practice of bioethics as applied to healthcare. RECENT FINDINGS: It stresses the specific position of the adolescent as being a unique individual searching for autonomy and, most of the time, being competent to make decisions regarding the adolescent's own health. It briefly outlines the principles of a 'deliberative' approach in which the practitioner, while keeping in mind the legal context of the country where the practitioner is working, assesses to what extent the adolescent can be considered as competent, and then discusses with the adolescent the medical and psychosocial aspects of the various actions to be taken in a situation, as well as the basic ethical values linked with each of the various options available. The deliberation can involve relevant stakeholders, provided the issues concerning confidentiality have been fully discussed with the adolescent. SUMMARY: This process forces the practitioner, the adolescent patient and those who care for the adolescent patient to look outside their usual frameworks and make a decision that is in the best interest of the young person, and is informed by various ethical values.

Training needs in adolescent medicine of practising doctors: a Swiss national survey of six disciplines.

OBJECTIVE: To assess and compare the training needs in adolescent medicine of doctors within 6 specialties as a basis for the development of pre/postgraduate and continuing medical education (CME) training curricula. DESIGN: Cross-sectional postal survey. SETTING: Switzerland. PARTICIPANTS: National, representative, random sample of 1857 practising doctors in 6 disciplines (general practitioners, paediatricians, gynaecologists, internists, psychiatrists, child psychiatrists) registered with the Swiss Medical Association. MAIN OUTCOME MEASURES: Perceived importance of and training interest in 35 topics related to adolescent medicine listed in a self-administered, anonymous questionnaire. RESULTS: A total of 1367 questionnaires were returned, representing a response rate of 73.9%. Clear interest in adolescent medicine was reported by 62.1% of respondents. Topics perceived to be the most important in everyday practice were functional symptoms (71.4%), acne (67.1%), obesity (64.6%), depression-anxiety (68.1%) and communication with adolescents (61.7%). Differences between disciplines were especially marked for gynaecologists, who expressed interest almost exclusively in medical topics specific to their field. In contrast, other disciplines commonly reported a keen interest in psychosocial problems. Accordingly, interest in further training was expressed mostly for functional symptoms (62.4%), eating disorders (56.3%), depression-anxiety (53.7%) and obesity (52.6%). Issues related to injury prevention, chronic disease and confidentiality were rated as low priorities. CONCLUSIONS: Regardless of discipline, Swiss primary care doctors expressed a strong interest in adolescent medicine. Continuing medical education courses should include both interdisciplinary courses and discipline-specific sessions. Further training should address epidemiological and legal/ethical issues (e.g. injury prevention, confidentiality, impact of chronic conditions).

Les neurosciences au Tribunal : de la responsabilité à la dangerosité, enjeux éthiques soulevés par la nouvelle loi française

AIM: In the past few years, spectacular progress in neuroscience has led to the emergence of a new interdisciplinary field, the so-called "neurolaw" whose goal is to explore the effects of neuroscientific discoveries on legal proceedings and legal rules and standards. In the United States, a number of neuroscientific researches are designed specifically to explore legally relevant topics and a case-law has already been developed. In Europe, neuroscientific evidence is increasingly being used in criminal courtrooms, as part of psychiatric testimony, nourishing the debate about the legal implications of brain research in psychiatric-legal settings. Though largely debated, up to now the use of neuroscience in legal contexts had not specifically been regulated by any legislation. In 2011, with the new bioethics law, France has become the first country to admit by law the use of brain imaging in judicial expertise. According to the new law, brain imaging techniques can be used only for medical purposes, or scientific research, or in the context of judicial expertise. This study aims to give an overview of the current state of the neurolaw in the US and Europe, and to investigate the ethical issues raised by this new law and its potential impact on the rights and civil liberties of the offenders. METHOD: An overview of the emergence and development of "neurolaw" in the United States and Europe is given. Then, the new French law is examined in the light of the relevant debates in the French parliament. Consequently, we outline the current tendencies in Neurolaw literature to focus on assessments of responsibility, rather than dangerousness. This tendency is analysed notably in relation to the legal context relevant to criminal policies in France, where recent changes in the legislation and practice of forensic psychiatry show that dangerousness assessments have become paramount in the process of judicial decision. Finally, the potential interpretations of neuroscientific data introduced into psychiatric testimonies by judges are explored. RESULTS: The examination of parliamentary debates showed that the new French law allowing neuroimaging techniques in judicial expertise was introduced in the aim to provide a legal framework that would protect the subject against potential misuses of neuroscience. The underlying fear above all, was that this technology be used as a lie detector, or as a means to predict the subject's behaviour. However, the possibility of such misuse remains open. Contrary to the legislator's wish, the defendant is not fully guaranteed against uses of neuroimaging techniques in criminal courts that would go against their interests and rights. In fact, the examination of the recently adopted legislation in France shows that assessments of dangerousness and of risk of recidivism have become central elements of the criminal policy, which makes it possible, if not likely that neuroimaging techniques be used for the evaluation of the dangerousness of the defendant. This could entail risks for the latter, as judges could perceive neuroscientific data as hard evidence, more scientific and reliable than the soft data of traditional psychiatry. If such neuroscientific data are interpreted as signs of potential dangerousness of a subject rather than as signs of criminal responsibility, defendants may become subjected to longer penalties or measures aiming to ensure public safety in the detriment of their freedom. CONCLUSION: In the current context of accentuated societal need for security, the judge and the expert-psychiatrist are increasingly asked to evaluate the dangerousness of a subject, regardless of their responsibility. Influenced by this policy model, the judge might tend to use neuroscientific data introduced by an expert as signs of dangerousness. Such uses, especially when they subjugate an individual's interest to those of society, might entail serious threats to an individual's freedom and civil liberties.

Les femmes, oubliées de la recherche clinique [Women, forgotten by clinical research].

Durant des années, les femmes ont été sous-représentées dans les études cliniques. Or, de nombreuses molécules n'ont pas le même effet chez les hommes et les femmes, en raison de différences pharmacodynamiques et pharmacocinétiques. Il en découle un manque d'informations sur les effets thérapeutiques ou indésirables des substances mais aussi, plus généralement, une moins bonne connaissance des pathologies chez les femmes et une prise en charge plus souvent sous-optimale.La sous-représentation est due à divers facteurs, allant de la perception des femmes au sein de la société à des enjeux éthiques vis-à-vis de la grossesse. L'importance d'inclure suffisamment de femmes comme sujets d'études nécessite ainsi une prise de conscience médicale et également sociale ; elle devra s'accompagner de changements entre autres politiques ou législatifs. For years, women were underrepresented in clinical studies. But the effect of many drugs differ among women and men, due to pharmacokinetic and pharmacodynamic differences. As a result, there is a lack of information on therapeutic or adverse effets of drugs and, more generally, a lack of knowledge on diseases, leading more frequently to sub-optimal medical care in women. This underrepresentation is due to various factors, including the social role of women or ethical issues about pregnancy. The need for adequate representation of women in clinical studies is a social as well as medical concern, that implies political and legal changes.

7

This paper discusses the issues involved in ICT from an ethico-political perspective, which states that an innovation is fully justifiable when it contributes to the empowerment, equality, and autonomy of the agent targeted. With this criterion in mind, discussing the foreseeable impacts of ubicomp-ICT, it focuses on the dangers linked to the enhanced asymmetry in the distribution of power within the organization which it is likely to bring about. If left to "laissez-faire", it is finally suggested, it might even be seen as a threat to democracy.

Sedation palliative: aspects cliniques pratiques [Clinical and practical aspects of palliative sedation]

Un certain nombre de patients palliatifs en fin de vie présentent des symptômes qui ne peuvent pas être soulagés malgré la mise en oeuvre de tous les moyens traditionnels à disposition. Pour ces patients, lorsque des symptômes réfractaires induisent une souffrance intolérable, la sédation palliative est un moyen de dernier recours qui peut leur offrir un soulagement transitoire ou même définitif. Tout en présentant les enjeux éthiques, cet article explore les dimensions cliniques d'ordre pratique qui peuvent se présenter lors d'une sédation palliative chez un patient en fin de vie. Patients at the end-of-life may present with refractory symptoms which cannot be adequately relieved despite the use of all traditional means. When refractory symptoms lead to intolerable suffering, palliative sedation is a last recourse temporary or definitive treatment. While discussing ethical issues, clinical practice dimensions of palliative sedation are explored in this article

Segmental Durations of Speech

This dissertation considers the segmental durations of speech from the viewpoint of speech technology, especially speech synthesis. The idea is that better models of segmental durations lead to higher naturalness and better intelligibility. These features are the key factors for better usability and generality of synthesized speech technology. Even though the studies are based on a Finnish corpus the approaches apply to all other languages as well. This is possibly due to the fact that most of the studies included in this dissertation are about universal effects taking place on utterance boundaries. Also the methods invented and used here are suitable for any other study of another language. This study is based on two corpora of news reading speech and sentences read aloud. The other corpus is read aloud by a 39-year-old male, whilst the other consists of several speakers in various situations. The use of two corpora is twofold: it involves a comparison of the corpora and a broader view on the matters of interest. The dissertation begins with an overview to the phonemes and the quantity system in the Finnish language. Especially, we are covering the intrinsic durations of phonemes and phoneme categories, as well as the difference of duration between short and long phonemes. The phoneme categories are presented to facilitate the problem of variability of speech segments. In this dissertation we cover the boundary-adjacent effects on segmental durations. In initial positions of utterances we find that there seems to be initial shortening in Finnish, but the result depends on the level of detail and on the individual phoneme. On the phoneme level we find that the shortening or lengthening only affects the very first ones at the beginning of an utterance. However, on average, the effect seems to shorten the whole first word on the word level. We establish the effect of final lengthening in Finnish. The effect in Finnish has been an open question for a long time, whilst Finnish has been the last missing piece for it to be a universal phenomenon. Final lengthening is studied from various angles and it is also shown that it is not a mere effect of prominence or an effect of speech corpus with high inter- and intra-speaker variation. The effect of final lengthening seems to extend from the final to the penultimate word. On a phoneme level it reaches a much wider area than the initial effect. We also present a normalization method suitable for corpus studies on segmental durations. The method uses an utterance-level normalization approach to capture the pattern of segmental durations within each utterance. This prevents the impact of various problematic variations within the corpora. The normalization is used in a study on final lengthening to show that the results on the effect are not caused by variation in the material. The dissertation shows an implementation and prowess of speech synthesis on a mobile platform. We find that the rule-based method of speech synthesis is a real-time software solution, but the signal generation process slows down the system beyond real time. Future aspects of speech synthesis on limited platforms are discussed. The dissertation considers ethical issues on the development of speech technology. The main focus is on the development of speech synthesis with high naturalness, but the problems and solutions are applicable to any other speech technology approaches.

Coercion, Perceived Care and Quality of Life Among Patients in Psychiatric Hospitals

The goals of the study were to describe patients’ perceptions of care after experiencing seclusion/restraint and their quality of life. The goal was moreover to identify methodological challenges related to studies from the perspective of coerced patients. The study was conducted in three phases between September 2008 and April 2012. In the first phase, the instrument Secluded/ Restrained Patients’ Perception of their Treatment (SR-PPT) was developed and validated in Japan in cooperation with a Finnish research group (n = 56). Additional data were collected over one year from secluded/restrained patients using the instrument (n = 90). In the second phase, data were collected during the discharge process (n = 264). In the third phase, data were collected from electronic databases. Methodological and ethical issues were reviewed (n = 32) using systematic review method. Patients perceived that co-operation with the staff was poor; patients’ opinions were not taken into account, treatment targets collated and treatment methods were seen in different ways. Patients also felt that their concerns were not well enough understood. However, patients received getting nurses’ time. In particular, seclusion/restraint was considered unnecessary. The patients felt that they benefited from the isolation in treating their problems more than they needed it, even if the benefit was seen to be minor. Patients treated on forensic wards rated their treatment and care significantly lower than in general units. During hospitalization secluded/restrained patients evaluated their quality of life, however, better than did non-secluded/restrained patients. However, no conclusion is drawn to the effect that the better quality of life assessment is attributable to the seclusion/restraint because patients’ treatment period after the isolation was long and because of many other factors, as rehabilitation, medication, diagnostic differences, and adaptation. According to the systematic mixed studies review variation between study designs was found to be a methodological challenge. This makes comparison of the results more difficult. A research ethical weakness is conceded as regards descriptions of the ethical review process (44 %) and informed consent (32 %). It can be concluded that patients in psychiatric hospital care and having a voice as an equal expert require special attention to clinical nursing, decision-making and service planning. Patients and their family members will be consulted in plans of preventive and alternative methods for seclusion and restraint. The study supports the theory that in ethical decision-making situations account should be taken of medical indications, in addition to the patients’ preferences, the effect of treatment on quality of life, and this depends on other factors. The connection between treatment decisions and a patient’s quality of life should be evaluated more structurally in practice. Changing treatment culture towards patients’ involvement will support daily life in nursing and service planning taking into account improvements in patients’ quality of life.

New and Emerging Challenges of the ICT-Mediated Health and Well-Being Services

This monograph dissertation looks into the field of ICT-mediated health and well-being services. Through six chapters that extend the work done in the reviewed and published articles, the dissertation focuses on new and emerging technologies, and to impact of their use on the beneficiary; the individual who eventually derives advantage from the services. As the field is currently going through major changes particularly in the OECD countries, the focus is on shortterm developments in the field and the analysis on the long term developments is cursory by nature. The dissertation includes theoretical and empirical elements. Most of the empirical elements are linked to product development and conceptualization performed in the national MyWellbeing project that ended in 2010. In the project, the emphasis was on conceptualization of a personal aid for the beneficiary that could be used for managing information and services in the field of health and well-being services. This work continued the theme of developing individual-centric solutions for the field; a work that started in the InnoElli Senior program in 2006. The nature of this thesis is foremost a conceptual elaboration based on a literature review, illustrated in empirical work performed in different projects. As a theoretical contribution, this dissertation elaborates the role of a mediator, i.e. an intermediary, and it is used as an overarching theme. The role acts as a ‘lens’ through which a number of technology-related phenomena are looked at, pinned down and addressed to a degree. This includes introduction of solutions, ranging from anthropomorphic artefacts to decision support systems that may change the way individuals experience clinical encounters in the near-future. Due to the complex and multiform nature of the field, it is impractical and effectively impossible to cover all aspects that are related to mediation in a single work. Issues such as legislation, financing and privacy are all of equal importance. Consideration of all these issues is beyond the scope of this dissertation and their investigation is left to other work. It follows from this that the investigation on the role is not intended as inclusive one. The role of the mediator is also used to highlight some of the ethical issues related to personal health information management, and to mediating health and well-being related issues on behalf of another individual, such as an elderly relative or a fellow member of a small unit in the armed forces. The dissertation concludes in a summary about the use and functions of the mediator, describing some potential avenues for implementing such support mechanisms to the changing field of ICT-mediated health and well-being services. The conclusions also describe some of the limitations of this dissertation, including remarks on methodology and content.