The use of Intelligent Assistive Technology in dementia care opens the prospects of reducing the global burden of dementia and enabling novel opportunities to improve the lives of dementia patients. However, with current adoption rates being reportedly low, the potential of IATs might remain under-expressed as long as the reasons for suboptimal adoption remain unaddressed. Among these, ethical and social considerations are critical. This article reviews the spectrum of IATs for dementia and investigates the prevalence of ethical considerations in the (...) design of current IATs. Our screening shows that a significant portion of current IATs is designed in the absence of explicit ethical considerations. These results suggest that the lack of ethical consideration might be a codeterminant of current structural limitations in the translation of IATs from designing labs to bedside. Based on these data, we call for a coordinated effort to proactively incorporate ethical considerations early in the design and development of new products. (shrink)

Beauchamp and Childress’ definition of autonomous decision‐making includes the conditions of intentionality, understanding, and non‐control. In genetics, however, a relational conception of autonomy has been increasingly recognized. This article aims to empirically assess aspects of social influence in genetic testing decision‐making and to connect these with principlist and relational theories of autonomy. We interviewed 18 adult genetic counsellees without capacity issues considering predictive genetic testing for cancer predisposition for themselves and two counselling physicians in Switzerland. We conducted a qualitative analysis, (...) building on a grounded theory study about predictive genetic testing decision‐making. We found that some participants agreed to predictive genetic testing predominantly because relatives wanted them to do it, with some even acting contrary to their own convictions. Others, in contrast, based their decision on purely individualistic reasons but expressed difficulties in explaining their decision to their social environment. Healthcare professionals had a critical influence on decision‐making in many cases without being manipulative, as perceived by counsellees. Still, cases of coercion and social pressure occurred within social relationships. In conclusion, predictive genetic testing decision‐making includes relational and individualistic aspects, and both are compatible with autonomous decision‐making. While the principlist and relational notions of autonomy compete on a theoretical level, they are two sides of the same coin when used as analytical lenses for genetic testing decision‐making. Social acceptance of refusal of testing should be improved to mitigate social pressure. Individuals should be encouraged to decide for themselves how much their social environment influences their decision regarding predictive genetic testing. (shrink)

The primacy in modern medical ethics of the principle of respect for autonomy has led to the widespread assumption that it is unethical to change someone’s beliefs, because doing so would constitute coercion or paternalism., In this Viewpoint we suggest that persuasion is not necessarily paternalistic and is an essential component of modern medical practice.

Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients’ autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all of (...) whom might benefit from using advance directives. At the same time, the closed nature of prisons and the disparate power relationships that characterise them mean that great caution must be exercised to prevent care being withdrawn or withheld from inmates who actually want to receive it. This paper explores the issue of prisoners’ advance directives in the European context, starting with the position enshrined in international and European law that prisoners retain all their human rights, except the right to liberty, and are therefore entitled to self-determination regarding health care decisions. (shrink)

GPs usually care for their patients for an extended period of time, therefore, requests to not only discontinue a patient’s treatment but to assist a patient in a suicide are likely to create intensely stressful situations for physicians. However, in order to ensure the best patient care possible, the competent communication about the option of physician assisted suicide as well as the assessment of the origin and sincerity of the request are very important. This is especially true, since patients’ requests (...) for PAS can also be an indicator for unmet needs or concerns. Twenty-three qualitative semi-structured interviews were conducted to in-depth explore this multifaceted, complex topic while enabling GPs to express possible difficulties when being asked for assistance. The analysis of the gathered data shows three main themes why GPs may find it difficult to professionally communicate about PAS: concerns for their own psychological well-being, conflicting personal values or their understanding of their professional role. In the discussion part of this paper we re-assess these different themes in order to ethically discuss and analyse how potential barriers to professional communication concerning PAS could be overcome. (shrink)

Obtaining informed consent from patients is a moral and legal duty and, thus, a key legitimation for medical treatment. The pivotal prerequisite for valid informed consent is decision-making capacity of the patient. Related to the question of whether and when consent should be morally and legally valid, there has been a long-lasting philosophical debate about freedom of will and the connection of freedom and responsibility. The scholarly discussion on decision-making capacity and its clinical evaluation does not sufficiently take into account (...) this fundamental debate. It is contended that the notion of free will must be reflected when evaluating decision-making capacity. Namely, it should be included as a part of the appreciation-criterion for decision-making capacity. The argumentation is mainly drawn on the compatibilism of Harry Frankfurt. A solution is proposed which at the same time takes the notion of free will seriously and enriches the traditional understanding of decision-making capacity, strengthening its justificatory force while remaining clinically applicable. (shrink)

Aim: 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 analyse the definitions of the term biobank offered by various stakeholders in biobanking. Methods: Interviews were conducted with 36 biobanking stakeholders with international experience currently working in Switzerland. Results: 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. Conclusion: 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. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

Background Decisions regarding Cardio-Pulmonary Resuscitation (CPR) and Do Not Attempt Resuscitation (DNAR) orders remain demanding, as does including patients in the process. Objectives To explore physicians’ justification for CPR/DNAR orders and decisions regarding patient inclusion, as well as their reports of how they initiated discussions with patients. Methods We administered a face-to-face survey to residents in charge of 206 patients including DNAR and CPR orders, with or without patient inclusion. Results Justifications were provided for 59% of DNAR orders and included (...) severe comorbidity, patients and families’ resuscitation preferences, patients’ age, or poor prognosis or quality of life. Reasons to include patients in CPR/DNAR decisions were provided in 96% and 84% of cases, and were based on respect for autonomy, clinical assessment of the situation as not too severe, and the view that such inclusion was required. Reasons for not including patients were offered in 84% of cases for CPR and in 70% for DNAR. They included absent decision-making capacity, a clinical situation viewed as good (CPR) or offering little hope of recovery (DNAR), barriers to communication, or concern that discussions could be emotionally difficult or superfluous. Decisions made earlier in the patient's management were infrequently viewed as requiring revision. Residents reported a variety of introductions to discussions with patients. Conclusions These results provide better understanding of reasons for CPR/DNAR decisions, reasons for patient inclusion or lack thereof, and ways in which such inclusion is initiated. They also point to potential side-effects of implementing CPR/DNAR recommendations without in-depth and practical training. This should be part of a regular audit and follow-up process for such recommendations. (shrink)

A new Swiss law requires that any research involving humans must aim to answer "a relevant research question". This paper explains the relevance of the relevance criterion in research, analyses the Swiss and British guidelines on relevance, and proposes a framework for researchers and REC members that enables a clearer conception of the role of relevance in research. We conclude that research must be either scientifically or societally beneficial in order to qualify as relevant, and RECs therefore cannot avoid reviewing (...) the scientific aspects of proposed studies. Normally only scientifically relevant studies can be of benefit to society, but research of low scientific relevance can nonetheless be relevant to society if it forms part of the education of new doctors and scientists. (shrink)

In this paper we focus on how automated vehicles can reduce the number of deaths and injuries in accident situations in order to protect public health. This is actually a problem not only of public health and ethics, but also of big data—not only in terms of all the different data that could be used to inform such decisions, but also in the sense of deciding how wide the scope of data should be. We identify three key different types of (...) data, including basic data, advanced data and preference data, provide an ethical analysis of the use of these different types of data and of different ways of prioritizing between pedestrians and passengers, and propose four rules that can help set ethical priorities for ethical data use and decision making by automated vehicles. (shrink)

The annual UK potential donor audit captures families’ reasons for not consenting to donation of their deceased family members’ organs . Given that many families’ refusals and vetoes are based on false beliefs, cognitive bias and misunderstanding, it is incumbent upon doctors, nurses and transplant coordinators to invest sufficient time to facilitate informed consent or authorization. While such families are distressed, organ donation rates could be substantially improved if they were made aware of any mistaken beliefs, using recently suggested criteria (...) for the ethical use of persuasion . This article examines some of the reasons for refusal of donation and suggests ways to help families make better decisions. It emerges that the use of persuasion is ethically essential in order to prevent families making decisions that they may come to regret. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

In Switzerland, research with identifiable human tissue samples, and/or its accompanying data, must be approved by a research ethics committee before it can be allowed to take place. However, as the demand for such tissue has rapidly increased in recent years, and biobanks have been created to meet these needs, committees have had to deal with a growing number of such demands. Detailed instructions for evaluating every kind of tissue request are scarce. Committees charged with evaluating research protocols therefore sometimes (...) face uncertainty in their decision-making. We examine how a pool of Swiss REC members deal with a number of cases involving human tissue, in order to determine the standards they adhere to, and their understanding and implementation of existing laws and guidelines. There is considerable divergence in the approaches and decisions of Swiss REC members regarding human tissue sample requests, particularly concerning the issue of informed consent. Despite recent trends towards less strict consent requirements for biosample research, many of our respondents continue to employ demanding standards for researchers. The question of informed consent, and the circumstances in which it is required, continues to result in differences of opinion. While room for local and cultural interpretation is essential to the workings of an REC, misunderstanding of existing guidelines, or an absence of regulation in sensitive areas, will only lead to suboptimal functioning of the REC itself. Our data suggests that there is uncertainty and disagreement on the question of consent for human tissue sample, which existing laws and guidelines may not fully clarify. Methods to address these uncertainties should be implemented in order to ensure efficient and harmonious review of research protocols. (shrink)

This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty ; hope as reflective uncertainty ; hope (...) as self-therapy. The purpose of the paper is twofold. First, it aims to underline the significance of hope in patients’ medical decision-making, as well as the beneficence of hope for patients’ well-being, and for progress in research. Second, it shows how philosophical investigations—in particular Descartes—explore the phenomenon of hope and provide medical empirical research with profitable insights and tools. (shrink)

Elger splendidly describes the evolving global responses---both creative and misguided---to the ethical challenges arising in research using genetic databases and offers thoughtful suggestions for balancing the interests of science and `donors'. As insightful as it is comprehensive, this book is essential reading not only for bioethicists but for anyone who uses, oversees, or simply wants to understand biobanks, which are playing an increasingly essential role in biomedical and epidemiological research. Alexander M. Capron, University of Southern California, USA --.

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

It is well known that prisoners’ human rights are often violated. In this chapter we examine whether guidelines can be effective in preventing such violations and in helping physicians resolve the significant conflicts of interest that they often face in trying to protect prisoners’ rights. We begin by explaining the role of clinical and ethical guidelines outside prisons, in the context of healthcare for non-incarcerated prisoners, and then the specific role of such guidelines within prisons, where the main concerns are (...) ensuring respect for the principle of equivalence of care, and for a prisoner patient’s autonomy in health care decisions. After reviewing and analysing various national and international guidelines, we review the literature and assess whether the good practices set out in these guidelines actually translate into changes in professional behaviour and consequent benefits for prisoners. It emerges that physicians both outside and within prisons tend to be insufficiently familiar with the relevant guidelines, and that they too infrequently use the guidance to make decisions, preferring instead to use personal codes of conduct. Guidelines designed specifically for the prison context are important to ensure equivalence of care and should be better known by health care personnel and other professional groups working in prison. Further guidelines should be developed that describe challenging situations and provide concrete guidance as to how to deal with them. (shrink)

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed (...) light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas. (shrink)

Biobanks are essential tools for furthering a broad range of medical research areas. However, despite the plethora of national and international laws and guidelines which apply to them, the access and sharing policies of biobanks are only sparsely addressed by regulatory bodies. The ‘give and take’ process of biosample sharing is largely left up to biobank stakeholders themselves to oversee; it is therefore both in stakeholders' power, and in their interest, to ensure that sample accessibility is fair. This is an (...) important step in motivating researchers to collaborate and pool samples, and is crucial to fostering trust in the absence of universally accepted standard practices. To date, little attention has been paid to how fairness considerations affect scientific material sharing, and no empirical research has been carried out to determine the role that fairness plays in collaborative studies. In order to begin to gain understanding in this area, we interviewed 36 biobank stakeholders currently working in Switzerland, focusing on their perceptions of current and optimal fair sharing practices. Our findings reveal that fairness is an important feature of exchange situations for these stakeholders, and that they have well-formed notions about the practical elements of fair sample access, although ideas about the concept of fairness itself are vague. In order to support efforts to network biobanks, attention should be paid to this issue to reassure all involved that they are getting a fair share in their cooperative efforts. (shrink)

The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a (...) sample without the donor's consent. In this study, we present the results of 36 semistructured qualitative interviews with Swiss biobanking stakeholders regarding these options and the role of ethics committees in the process of authorizing sharing. Our results show that despite a lack of legal or guideline-based barriers to general consent, some stakeholders and ethics committees have reservations about this method of consent. In most cases, however, a general consent form is already in use. Many interviewees describe processes involving the ethics committees as time-consuming and cumbersome and their requirements as too demanding for donors/patients. Greater awareness of donors' opinions and preferences and the content of guidelines and recommendations could therefore be helpful for a better justified perspective of biobanking stakeholders and ethical committee members, equally. Finally, it may be necessary to differentiate between procedures governing future samples, where general consent is clearly desirable, and the use of old yet still relevant samples, where the option of using them without consent can be highly beneficial for research. (shrink)

Background: Multi-collaborator research is increasingly becoming the norm in the field of biomedicine. With this trend comes the imperative to award recognition to all those who contribute to a study; however, there is a gap in the current “gold standard” in authorship guidelines with regards to the efforts of those who provide high quality biosamples and data, yet do not play a role in the intellectual development of the final publication. -/- Methods and findings: We carried out interviews with 36 (...) individuals working in, or with links to, biobanks in Switzerland, in order to understand how they interpret, apply and value authorship criteria in studies involving biosamples. The majority of respondents feel that authorship is an important motivating factor in working and publishing collaboratively. However, our findings suggest that in some cases, authorship guidelines are being ignored in favor of departmental standards which recognize “scientific work” as meriting authorship. -/- Conclusions: Our results support the current calls in the literature for an alternative method of crediting biomaterial contributions, in order to ensure appropriate authorship inclusion and promote collaborative research involving biobanks. (shrink)

It has come to our attention that in the original article [1] information regarding dates was omitted. The data in this study were obtained in Switzerland four years before the entering into force of the new Swiss Human Research Act in 2014, when the guidelines of the Swiss Academy of Medical Sciences ceased to apply. It is important for readers to know that at the time of the study there was no binding law in Switzerland, only the more open SAMS (...) guidelines that have a different legal status. We would expect to find less variation of opinions among research ethics committee members if the study were repeated after the federal law came into force. (shrink)

Switzerland has an excellent culture of medical research and is a melting pot for medical experts with international expertise. Nevertheless, as in other countries, the resources available to medical researchers are not being fully used. Biological samples, which enable a host of medical research studies to be carried out without invasive methods involving patients, are frequently left unused or forgotten. The aim of this study is to examine the experiences of biobank stakeholders regarding the use or underuse of biosamples, in (...) order to develop paths to optimize biosample research. Interviews were carried out with 36 biobank stakeholders in Switzerland concerning their experiences with biosample use, and the possible obstacles at each stage of the process. Interviews revealed that standard operating procedures were the most frequently cited obstacle, although these were not judged to be severe hindrances. Despite a stated desire to develop biosample research, skepticism of sharing networks and wariness of new partnerships were strong themes. Biobanking still functions as an emerging field, in which exchange practices have yet to be established at the national and international levels. Sample exchange continues to function largely based on personal contacts; while this is an inherent feature of competitive medical research, opportunities for large-scale studies may be lost due to excessive caution. (shrink)

The importance of medical confidentiality is obvious to anyone who has ever been a patient, and protecting private information about patients is one of the key responsibilities of healthcare professionals. However, maintaining the confidentiality of patients who are incarcerated in prisons poses several ethical challenges. In this chapter we explain the importance of confidentiality in general, and the dilemmas that sometimes face doctors with regard to it, before describing some of the specific difficulties faced by prison doctors. Although healthcare professionals (...) working in prisons have the same duty to respect confidentiality as those working in the wider community, the conflicts of interest caused by their dual loyalty to prisoners and to prison authorities can make it very difficult to strike the right balance between respecting confidentiality and protecting prisoners and third parties. We illustrate some of the dilemmas facing prison doctors with a series of case discussions before providing suggestions for resolving these difficult situations. Ideally, a combination of great ethical and legal sensitivity on the part of healthcare professionals and general respect for prisoners’ rights on the part of other prison staff enables most issues to be resolved without the need to compromise patients’ confidentiality. (shrink)

In certain cases of sudden death, forensic experts may discover during an investigation or autopsy that family members of the deceased are also at risk of harm—from genetic disease, for instance. But do they have a duty to warn them? Looking at similar duties of physicians and researchers to warn third parties of risk suggests they do.

Background: Mental health professionals working in correctional contexts engage a double role to care and control. This dual loyalty conflict has repeatedly been criticized to impede the development of a high-quality alliance. As therapeutic alliance is a robust predictor of outcome measures of psychotherapy, it is essential to investigate the effects of this ethical dilemma. Methods: This qualitative interview study investigates patients’ perceptions of their therapists’ dual role conflict in court-mandated treatment settings. We interviewed 41 older incarcerated persons using a (...) semi-structured interview guide, the interviews were subsequently analyzed following thematic analysis. Results: We first present the patients’ perceptions of their treating psychotherapist’s dual loyalty conflict, which was linked to their overall treatment experience. In a second step, we outline the study participants’ reasons for this judgment, which were most commonly linked to feelings of trust or betrayal. More specifically, they named certain therapist characteristics and activities that enabled them to develop a trustful therapeutic alliance, which we grouped into four topics: respecting the patient’s pace and perceived coercion; patient health needs to be first priority; clarity in roles and responsibilities; and the art of communication – between transparency and unchecked information sharing. Discussion: Developing a high quality alliance in mandatory offender treatment is central due to its relationship with recovery and desistance. Our findings show that some therapists’ characteristics and activities attenuate the negative impact of their double role on the development and maintenance of the alliance. To increase the effectiveness of court-mandated treatments, we need to support clinicians in dealing with their dual role to allow the formation of a high quality therapeutic alliance. Our qualitative interview study contributed to this much-needed empirical research on therapist’ characteristics promoting a trustful relationship in correctional settings. (shrink)

Advance directives are written documents that give patients the opportunity to communicate their preferences regarding treatments they do or do not want to receive in case they become unable to make decisions. Commonly used pre-printed forms have different formats. Some offer space for patients to appoint a surrogate decision maker, and/or to determine future medical treatments and/or give a statement of personal values. So far it is unknown which forms GPs preferably use and why they decide to do so. 23 (...) semi-structured interviews with GPs were analysed using content analysis. Interviewees mainly use short templates and medium length templates with checkboxes to indicate patients’ preferences in regards to life prolonging measures. Especially when patients faced the progression of a disease, participants use the latter version. Only then, the interviewees remarked, patients are capable to rate concrete situations reliably. GPs also realize the importance of the verbal assessment of patients’ preferences; however they rarely keep a written form of the conversation. Some GPs hand out one or more templates and ask their patients to read and think about them at home with the option to talk to them about it later on, while others prefer their patients to fill them out alone at home. Regardless of template usage, most GPs emphasize that ADs require regular updates. GPs tend to see standardized advance directives mainly as a tool to start a conversation with their patients and to identify their real preferences and values. When the patient is still not facing the progression of an already existing disease it could be sufficient to only appoint a surrogate decision maker instead of creating a full AD. However, in all other situations, appointing a surrogate decision maker should be backed up by a written statement of a patient’s general values. Patients and their relatives should always have the opportunity to ask their GP for medical advice when drafting an AD. It is crucial to regularly verify and update existing ADs within the course of a disease. (shrink)

Biobanks are vital for diagnostic, epidemiological and research purposes following radiation disasters, but there is a history of delays in this type of research and specifically in setting up important resources including tissue repositories following the rare occurrence of these events. Here, we argue that one key lesson from Chernobyl and Fukushima has still not been learned: it is essential to agree on a proactive international plan for a radiation disaster biobank and accompanying data collection before the next disaster occurs.

BackgroundMental health professionals (MHP) working in court-mandated treatment settings face ethical dilemmas due to their dual role in assuring their patient’s well-being while guaranteeing the security of the population. Clear practical guidelines to support these MHPs’ decision-making are lacking, amongst others, due to the ethical conflicts within this field. This qualitative interview study contributes to the much-needed empirical research on how MHPs resolve these ethical conflicts in daily clinical practice. Methods31 MHPs working in court-mandated treatment settings were interviewed. The interviews (...) were semi-structured and our in-depth analysis followed the thematic analysis approach.ResultsWe first outline how mental health professionals perceive their dual loyalty conflict and how they describe their affiliations with the medical and the justice system. Our findings indicate that this positioning was influenced by situational factors, drawing the MHPs at times closer to the caring or controlling poles. Second, our results illustrate how participating MHPs solve their dual loyalty conflict. Participants considered central to motivate the patient, to see the benefits of treatment and its goals. Further, transparent communication with patients and representatives of the justice system was highlighted as key to develop a trustful relationship with the patient and to manage the influences from the different players involved. ConclusionsEven though individual positioning and opinions towards dealing with the influences of the justice system varied, the results of our research show that, in spite of varying positions, the underlying practice is not very different across participating MHPs. Several techniques that allow developing a high-quality therapeutic alliance with the patient are key elements of general psychotherapy. Transparency appears as the crucial factor when communicating with the patient and with representatives of the justice system. More specifically, patients need to be informed since the beginning of therapy about the limits of medical confidentiality. It is also recommended to develop guidelines that define the level of detailed information that should be disclosed when communicating with the authorities of the justice system. (shrink)

Objectives The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. Methods We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program,. The respondents included teams from four clinical research centres and various collaborating partners. This paper analyses responses to the (...) question: What is Health Research for Development? Results Based on the stakeholders’ experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing. Conclusion Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context - map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development. (shrink)