Background: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. Objectives: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. (...) Method: A modified Delphi study in two rounds Results: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as “confidentiality of genetic information” and “implications of research for relatives” which changes the impact and application of existing ethical topics such as “informed consent” and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. Conclusions: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics. (shrink)

Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study using in-depth (...) face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future. (shrink)

BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, ‘ethical considerations’ (...) and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments. Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation. (shrink)

In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. A content analysis of narratives of 24 bereaved relatives of unregistered, eligible, brain-dead donors was performed. Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned (...) afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death. (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All study. Trained Swazi research (...) assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All study. Trained Swazi research (...) assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

In this paper, some fundamental aspects of societal change processes are described, leading to proposals of how to cope with such changes through continuous learning within society. This change society is presently emerging worldwide. It is very much shaped by advanced networked information and communication technology. Correspondingly, certain trends are identified in this paper which indicate the change processes towards this new emerging society. Subsequently, different personal skills are described which are required for all members of society to cope with (...) these trends. The paper finishes with a case study which deals with regional development through open networked business processes. The aim of the project described was to develop a joint family vacation concept in the former socialist East German state of Saxonia. Thus, it illustrates the change and learning processes across society which have taken place in many countries after the socialist era. (shrink)

Despite similar health problems, older persons show different care seeking behaviours for a variety of reasons. The aim of this study was to identify motives underlying the attitudes of older persons to seek nursing care and to develop a theoretical rationale which allows viewing their mutual interaction. Theory development according to Walker and Avant was used as a method to derive a model from the reviewed literature. Six categories were identified that may influence seeking of nursing care: perceived threat, disposition, (...) external options & barriers, current coping abilities, influence of significant others, and outcome value. Findings do not allow determination of factors that may predict care seeking attitude but provide a loosely structured conceptual model for culture specific investigations. Qualitative studies guided by the model should be conducted in order to develop testable theories of care seeking for different cultures and settings. (shrink)

The idea that the world, not only of man but also of nature, was subject to a continuous process of change has taken strong root since the beginning of the nineteenth century. In 1859, Charles Darwin demonstrated that these changes were the result of immutable, eternal laws - although everything was subject to change, it was only in accordance with these laws. from the second half of the nineteenth century down to the First World War, this vision of change and (...) determination was interpreted in many different ways, both pessimistically and optimistically. It is striking that a fear of degeneration often went hand in hand with a belief in an upward evolutionary process and was not confined to any particular political spectrum. This volume, number XIV in the series, contains the papers presented at a workshop on the reception and interpretation of the theory of evolution, organised by the editors in April 2003. It covers the many, often irreconcilable faces, of the theory of evolution concerning not only the concrete substantive interpretation but also the many different fields of late nineteenth century thought by concentrating on cultural life in the broadest sense - political, social, scientific and artistic, both literature and the visual arts. This volume illustrates the versatility of the concept of evolution, and of degeneration as well, with the emphasis on the Netherlands. It not only presents the contradictions and many-sidedness of the post-Darwinian world, but also the continuity with the world before 1860. Moreover, it reveals one clear co-ordinating theme, namely that the theory of evolution was used as justification for many different ideologies and practices. (shrink)

As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication of (...) incidental findings in imaging research. We conducted an interview study with a purposive sample of researchers at research facilities across the Netherlands. Based on a qualitative analysis of these interviews and on existing guidelines found in the literature, we developed a prototype ethical framework, which was critically assessed and fine-tuned during a two-day international expert meeting with bioethicists and representatives from large population-based imaging studies from the United Kingdom, Germany, Sweden and Belgium. Practices and policies for the handling of incidental findings vary strongly across the Netherlands, ranging from no review of research scans and limited feedback to research participants, to routine review of scans and the arrangement of clinical follow-up. Respondents felt that researchers do not have a duty to actively look for incidental findings, but they do have a duty to act on findings, when detected. The principle of reciprocity featured prominently in our interviews and expert meeting. We present an ethical framework that may guide researchers and research ethics committees in the design and/or evaluation of appropriate pathways for the handling of incidental findings in imaging studies. The framework consists of seven steps: anticipation of findings, information provision and informed consent, scan acquisition, review of scans, consultation on detected abnormalities, communication of the finding, and further clinical management and follow-up of the research participant. Each of these steps represents a key decision to be made by researchers, which should be justified not only with reference to costs and/or logistical considerations, but also with reference to researchers’ moral obligations and the principle of reciprocity. (shrink)

This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants’ lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants’ narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts (...) on self and others. The paper shows: that the impact of incidental findings may be greater than participants at first let on; incidental findings can have significant effects on participants’ social environment; and participants may not feel prepared for disclosure even if incidental findings have been discussed during the informed consent process. The authors call for investigators to be aware of research participants’ experiences and these short- and long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings. (shrink)

The focus of this article is perceptions of elderly patients and nurses regarding patients’ autonomy in nursing practice. Autonomy is empirically defined as having two components: information received/given as a prerequisite and decision making as the action. The results indicated differences between staff and patient perceptions of patient autonomy for both components in all five countries in which this survey was conducted. There were also differences between countries in the perceptions of patients and nurses regarding the frequency with which patients (...) received information from nursing staff or were offered opportunities to make decisions.This is the second of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)

The focus of this article is on elderly patients’ and nursing staff perceptions of privacy in the care of elderly patients/residents in five European countries. Privacy includes physical, social and informational elements. The results show that perceptions of privacy were strongest in the UK (Scotland) and weakest in Greece. Country comparisons revealed statistically significant differences between the perceptions of elderly patients and also between those of nurses working in the same ward or long-term care facility. Perceptions of privacy by patients (...) and their nursing staff were quite similar in Finland, Germany and the UK. In contrast, in Greece and Spain these perceptions were different: nurses believed that they took account of their patients’ privacy needs more often than the patients themselves felt this was the case. Among Spanish and UK patients, an association was found between lower levels of independence and comparatively less positive perceptions of privacy. No associations were established between nurses’ perceptions and their demographic factors. This is the third of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)

The focus of this article is on elderly patients’ and nursing staff perceptions of informed consent in the care of elderly patients/residents in five European countries. The results suggest that patients and nurses differ in their views on how informed consent is implemented. Among elderly patients the highest frequency for securing informed consent was reported in Finland; the lowest was in Germany. In contrast, among nurses, the highest frequency was reported in the UK (Scotland) and the lowest in Finland. In (...) a comparison of patients’ and nurses’ perceptions, nurses had more positive views than patients in all countries except Finland. Patients with less need for nursing interventions in Greece and Spain gave their consent less often. The German and Greek patients were older, and the results also point to an association between this and their lower frequency of giving consent. In Spain, patients who were married or who had a family member or friend to look after their personal affairs were more likely to be included in the group whose consent was sought less often. This is the fourth of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)

This article discusses nurses’ and elderly patients’ perceptions of the realization of autonomy, privacy and informed consent in five European countries. Comparisons between the concepts and the countries indicated that both nurses and patients gave the highest ratings to privacy and the lowest to informed consent. There were differences between countries. According to the patient data, autonomy is best realized in Spain, privacy in the UK (Scotland), and informed consent in Finland. For the staff data, the best results tended to (...) concentrate in the UK. The conceptual and methodological limitations of the study are identified and discussed. Implications of the results are divided into three areas: nursing practice, education and research. In practice, the analysis of patients’ values and the ethical sensitivity of nurses are important as part of ethically good care. In nurse education, students should learn to recognize ethical problems, generally and particularly, among vulnerable groups of patients. Multicultural international research is needed in this area. This is the last of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)

Ethical issues in the care of elderly people have been identified in many countries. We report the findings of a comparative research project funded by the European Commission, which took place between 1998 and 2001. The project explored the issues of autonomy (part I), privacy (part II) and informed consent (part III) in nursing practice. Data were collected from elderly residents/patients (n = 573) and nursing staff (n = 887) in five European countries: Finland, Spain, Greece, Germany and the UK (...) (Scotland). Questionnaires were used as the data collection tool (self-completion questionnaires for staff, structured interviews for the elderly participants). Four basic nursing interventions in the care of elderly people were targeted: hygiene, fluid intake and nutrition, medication, and elimination. The data were analysed statistically. The results indicated differences within all five countries between staff and patient perceptions of autonomy, privacy and informed consent. There were also similar differences between individual countries. Conclusions were reached concerning practice, education and research. This is the first of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented. (shrink)

This narrative describes the making of a German electrical engineer, Kurt Beyer, into a micro-entrepreneur. He set for himself the goal of sailing around the world in his own vessel – without being able to afford to buy such a ship. Many people in Germany have in recent years started to build their own sea-going vessels in order to escape from the creativity-stifling and restrictive patterns of their lives and work. Only a few of them have ever finished building their (...) vessels. Firstly, this report describes the experiences of one of those few who have made it. Secondly, it tells the story of how this engineer himself turned into a micro-entrepreneur during the period of yacht-building and how later he started his own charter enterprise, centred around his yacht. Following the model of entrepreneurship described by Dassen-Housen in this issue of AI & Society, the narrative illustrates what it means to run such an enterprise in view of the international competition. Here follows the narrative of the engineer and ship-builder himself (translated by D. Brandt). (shrink)