Ethical issues in tuberculosis screening and the use of new drugs for prisoners.

SETTING: Prisons are known to have extremely high tuberculosis (TB) and multidrug-resistant (MDR) and extensively drug-resistant (XDR) TB prevalence and poor treatment outcomes.OBJECTIVE: To examine the screening and M/XDR-TB treatment with new TB drugs in prisons from the perspective of international ethical and legal requirements.DESIGN: WHO recommendations on TB screening in prisons and M/XDR-TB treatment as well as the international human rights law on prisoners were analysed.RESULTS: Prisoners have a human right to access at least the same level of TB care as in their communities. Screening for TB in prisons, which may run contrary to a given individual's choice to be tested, may be justified by the positive obligation to prevent other prisoners from contracting a possibly deadly disease. Introduction of new TB drugs in prisons is necessary, ethically sound and should start in parallel with introduction in a civilian sector in strict compliance with the WHO recommendations.CONCLUSION: Access to screening for TB, as well as effective treatment according to WHO recommendations, must be ensured by countries on the basis of international human rights conventions.

Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology.

Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.

Stakeholder views on participant selection for first-in-human trials in cancer nanomedicine.

BACKGROUND: Participant selection for first-in-human (fih) trials involves complex decisions. The trial design makes it unlikely that participants will receive clinically relevant therapeutic benefit, but they are likely to experience risks of various magnitudes and types. The aim of the present paper was to describe and discuss the views of investigators and ethics committee members about the choice of trial participants for fih trials in cancer nanomedicine. METHODS: We drew insights from an exploratory qualitative study involving thematic analysis of 46 in-depth interviews with key stakeholders in Europe and North America involved in fih nanomedicine trials. The present work draws on subset of 21 interviews with investigators and ethics committee members who have either conducted or reviewed a fih cancer nanomedicine trial or are planning one. RESULTS: Investigators and ethics committee members are aware of the ethics standards for recruiting patients with end-stage cancer into fih trials, but they nonetheless question the practice and provide reasons against it. CONCLUSIONS: Although it is a standard and ethically accepted practice to enrol patients with end-stage cancer and no treatment options into fih trials of investigational chemotherapeutic molecules, doing so can threaten the validity and generalizability of the trials, thereby weakening translational research. Another possibility is to stratify and include patients with less advanced disease who demonstrate certain biomarkers or cancer genotypes and who have a disease profile similar to that tested in preclinical studies. The latter approach could be a step toward personalized medical research and targeted drug development. Such a patient selection approach requires multi-stakeholder discussion to reach scientific and ethics consensus.

The impact of medical errors on Swiss anaesthesiologists: a cross-sectional survey.

BACKGROUND: Clinicians involved in medical errors can experience significant distress. This study aims to examine (1) how medical errors impact anaesthesiologists in key work and life domains; (2) anaesthesiologists' attitudes regarding support after errors; (3) and which anaesthesiologists are most affected by errors. METHODS: This study is a mailed cross-sectional survey completed by 281 of the 542 clinically active anaesthesiologists (52% response rate) working at Switzerland's five university hospitals between July 2012 and April 2013. RESULTS: Respondents reported that errors had negatively affected anxiety about future errors (51%), confidence in their ability as a doctor (45%), ability to sleep (36%), job satisfaction (32%), and professional reputation (9%). Respondents' lives were more likely to be affected as error severity increased. Ninety per cent of respondents disagreed that hospitals adequately support them in coping with the stress associated with medical errors. Nearly all of the respondents (92%) reported being interested in psychological counselling after a serious error, but many identified barriers to seeking counselling. However, there were significant differences between departments regarding error-related stress levels and attitudes about error-related support. Respondents were more likely to experience certain distress if they were female, older, had previously been involved in a serious error, and were dissatisfied with their last error disclosure. CONCLUSION: Medical errors, even minor errors and near misses, can have a serious effect on clinicians. Health-care organisations need to do more to support clinicians in coping with the stress associated with medical errors.

What is a biobank? Differing definitions among biobank stakeholders.

While there is widespread agreement on the broad aspects of what constitutes a biobank, there is much disagreement regarding the precise definition. This research aimed to describe and analyze the definitions of the term biobank offered by various stakeholders in biobanking. Interviews were conducted with 36 biobanking stakeholders with international experience currently working in Switzerland. The results show that, in addition to the core concepts of biological samples and linked data, the planned use of samples (including sharing) is held to be a key criterion. It also emerges that some researchers avoid the term in order to circumvent certain regulatory guidelines, including informed consent requirements. Developments in the field of biobanking will be complicated if researchers are unaware, or deny that their collection is a biobank. A clear definition of the term is therefore an important step towards fostering collaboration amongst researchers, enabling them to more easily identify potential sources of samples.

Second-hand tobacco smoke in prison: tackling a public health matter through research.

OBJECTIVES: This action-research study conducted in a Swiss male post-trial detention centre (120 detainees and 120 staff) explored the attitudes of detainees and staff towards tobacco smoking. Tackling public health matters through research involving stakeholders in prisons implies benefits and risks that need exploration. STUDY DESIGN: The observational study involved multiple strands (quantitative and qualitative components, and air quality measurements). This article presents qualitative data on participants' attitudes and expectations about research in a prison setting. METHODS: Semi-structured interviews were used to explore the attitudes of detainees and staff towards smoking before and after a smoke-free regulation change in the prison in 2009. Specific coding and thematic content analysis for research were performed with the support of ATLAS.ti. RESULTS: In total, 77 interviews were conducted (38 before the regulation change and 39 after the regulation change) with 31 detainees (mean age 35 years, range 22-60 years) and 27 prison staff (mean age 46 years, range 29-65 years). Both detainees and staff expressed satisfaction regarding their involvement in the study, and wished to be informed about the results. They expected concrete changes in smoke-free regulation, and that the research would help to find ways to motivate detainees to quit smoking. CONCLUSION: Active involvement of stakeholders promotes public health. Interviewing detainees and prison staff as part of an action-research study aimed at tackling a public health matter is a way of raising awareness and facilitating change in prisons. Research needs to be conducted independently from the prison administrators in order to increase trust and to avoid misunderstandings.

Prevalence of positive tuberculosis skin tests during 5 years of screening in a Swiss remand prison.

BACKGROUND: Tuberculosis (TB) screening in prisons is recommended, but the appropriate methods remain controversial. Studies evaluating screening in remand prisons are scarce. METHOD: Between 1997 and 2001, voluntary screening based on the tuberculin skin test (TST) was offered to all prisoners on entry into the largest remand prison in Switzerland. Prisoners with positive results underwent chest X-rays. We analysed this information collected in an anonymous database. RESULTS: A total of 4890 prisoners entered the prison and were eligible for screening; 3779 (77.3%) had TST performed on average 9 days after arrival: 46.9% were positive (induration ≥ 10 mm). Positive TST rates were similar over the 5 years. Women were more likely to have a negative TST (60.4%) than men (47.7%; P < 0.001, Pearson's (2) 16.5). Positive TSTs varied according to the prisoner's country of origin (64% for sub-Saharan Africa, 57% for Eastern Europe, 56% for North Africa, 51% for Asia and 34% for North and West Europe). CONCLUSION: The percentage of TST-positive subjects was high, and most did not receive preventive treatment for latent TB. The usefulness of systematic TST for all prisoners on entry is limited, as diagnosis of TB disease usually remains the priority in prisons.

Prison medicine, public health policy and ethics: the Geneva experience.

The health care of prisoners represents a public health priority. However, in many countries, the pursuit of public health goals in prison is not granted. Introducing condom distribution and syringe exchange in prisons remains the exception. This article describes the example of a Swiss canton in which the legal framework enables health-care personnel to put into practice health care that is equivalent to the care available to non imprisoned persons including harm reduction measures for prisoners. The article describes the medical institutions in charge of health care for prisoners and the legal and ethical framework, its repercussions on the clinical and public health context, as well as persisting difficulties. The Geneva experience shows that in spite of the legal context, preventive measures, free informed consent and confidentiality have to be constantly defended by physicians and public health authorities. Both need to be regularly educated on their obligations towards prisoner patients. A complaint mechanism granted to detainees as part of the legal framework is important to adapt existing practice to new challenges.

Sudden death: ethical and legal problems of post-mortem forensic genetic testing for hereditary cardiac diseases.

Hereditary non-structural diseases such as catecholaminergic polymorphic ventricular tachycardia (CPVT), long QT, and the Brugada syndrome as well as structural disease such as hypertrophic cardiomyopathy (HCM) and arrhythmogenic right ventricular cardiomyopathy (ARVC) cause a significant percentage of sudden cardiac deaths in the young. In these cases, genetic testing can be useful and does not require proxy consent if it is carried out at the request of judicial authorities as part of a forensic death investigation. Mutations in several genes are implicated in arrhythmic syndromes, including SCN5A, KCNQ1, KCNH2, RyR2, and genes causing HCM. If the victim's test is positive, this information is important for relatives who might be themselves at risk of carrying the disease-causing mutation. There is no consensus about how professionals should proceed in this context. This article discusses the ethical and legal arguments in favour of and against three options: genetic testing of the deceased victim only; counselling of relatives before testing the victim; counselling restricted to relatives of victims who tested positive for mutations of serious and preventable diseases. Legal cases are mentioned that pertain to the duty of geneticists and other physicians to warn relatives. Although the claim for a legal duty is tenuous, recent publications and guidelines suggest that geneticists and others involved in the multidisciplinary approach of sudden death (SD) cases may, nevertheless, have an ethical duty to inform relatives of SD victims. Several practical problems remain pertaining to the costs of testing, the counselling and to the need to obtain permission of judicial authorities.

Factors influencing attitudes towards medical confidentiality among Swiss physicians.

Medical confidentiality is a core concept of professionalism and should be an integral part of pregraduate and postgraduate medical education. The aim of our study was to define the factors influencing attitudes towards patient confidentiality in everyday situations in order to define the need for offering further education to various subgroups of physicians. All internists and general practitioners who were registered members of the association of physicians in Geneva or who were working in the department of internal medicine or in the medical polyclinic of the University Hospital of Geneva in 2004 received a standardised questionnaire. Physicians were asked to indicate for seven vignettes whether a violation of confidentiality had occurred and whether the violation was not important, important or serious (scores 1-3; no violation = 0). 508 completed questionnaires were returned (participation rate 55%). Physicians who had worked in the hospital for more than 20 years identified violations of confidentiality more often than physicians with less hospital experience. Binary logistic regression showed that ethics education, total years of professional experience, being an internist, having a private practice, the length of working in private practice and gender were factors associated with correct identification of violations and their severity. However, each factor played a specific role only for single cases or a small number of situations (Cronbach alpha <0.6). Postgraduate education programs on confidentiality should be offered to a wide range of physicians and should address specific hypothetical situations in which there is a risk of avoidable breaches of confidentiality.

Terminally ill patients and Jehovah's Witnesses: teaching acceptance of patients' refusals of vital treatments.

OBJECTIVES: To find out whether and how the teaching of medical ethics can influence attitudes on accepting treatment refusals. SETTING AND DESIGN: Anonymous questionnaires were distributed to 4 groups of students at the University of Geneva who had participated (P) or not (nP) in teaching modules on medical law and ethics. One vignette described a terminally ill patient refusing mechanical ventilation, another a Jehovah's Witness refusing a life-saving blood transfusion. PARTICIPANTS: 127 medical and 168 law students. MAIN OUTCOME MEASURES: 5-point Likert scale of responses to the vignettes reaching from certain acceptance to certain non-acceptance of the treatment refusal. RESULTS: More than 80% of law students (nP) said that a good physician should accept the terminally ill patient's refusal. 84% (P) compared to 68% (nP) of medical students (P=0.03) would accept this refusal. The acceptance of the Jehovah's Witness refusal of a life-saving transfusion was less among all students. Students from the groups (P) reported significantly more often (P < 0.001) that they would accept (76% of medical students) or that a good physician should accept (63% of law students) the treatment refusal of the Jehovah's Witness than medical students (48%) and law students (27%) from the two other groups (nP). CONCLUSION: (P) students showed significantly more acceptance of treatment refusals in the hypothetical case scenarios than (nP) students from the same faculty. Religion, cultural origin and school education of the parents had less influence on attitudes than participation in ethical teaching and type of student (medicine vs. law).

Testing adolescents for a hereditary breast cancer gene (BRCA1): respecting their autonomy is in their best interest.

The testing of individuals before the age of 18 years for hereditary late-onset diseases has been judged ethically not acceptable in guidelines and directives published by medical professional organizations. However, there are not enough best interest arguments to deny genetic testing to an adolescent at risk of carrying a BRCA1 mutation, even if the competence of adolescents for medical decisions is considered to be lower than the competence of adults. The adolescent's decision is not irrational or of very high risk. Respecting adolescents' autonomous choices concerning genetic testing has positive consequences for their self-esteem and psychological health. Geneticists and other professionals should clearly differentiate between children and adolescents in regard to BRCA1 gene testing and recommend giving decision autonomy about the test to all psychologically "normal" adolescents.