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Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older (...) persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543. (shrink)

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Trust constitutes a fundamental strategy to deal with risks and uncertainty in complex societies. In line with the vast literature stressing the importance of trust in doctor–patient relationships, trust is therefore regularly suggested as a way of dealing with the risks of medical artificial intelligence (AI). Yet, this approach has come under charge from different angles. At least two lines of thought can be distinguished: (1) that trusting AI is conceptually confused, that is, that we cannot trust AI; and (2) (...) that it is also dangerous, that is, that we should not trust AI—particularly if the stakes are as high as they routinely are in medicine. In this paper, we aim to defend a notion of trust in the context of medical AI against both charges. To do so, we highlight the technically mediated intentions manifest in AI systems, rendering trust a conceptually plausible stance for dealing with them. Based on literature from human–robot interactions, psychology and sociology, we then propose a novel model to analyse notions of trust, distinguishing between three aspects: reliability, competence, and intentions. We discuss each aspect and make suggestions regarding how medical AI may become worthy of our trust. (shrink)

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Bioethics, Volume 36, Issue 2, Page 154-161, February 2022.

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Artificial intelligence (AI) based clinical decision support systems (CDSS) are becoming ever more widespread in healthcare and could play an important role in diagnostic and treatment processes. For this reason, AI‐based CDSS has an impact on the doctor–patient relationship, shaping their decisions with its suggestions. We may be on the verge of a paradigm shift, where the doctor–patient relationship is no longer a dual relationship, but a triad. This paper analyses the role of AI‐based CDSS for shared decision‐making to better (...) comprehend its promises and associated ethical issues. Moreover, it investigates how certain AI implementations may instead foster the inappropriate paradigm of paternalism. Understanding how AI relates to doctors and influences doctor–patient communication is essential to promote more ethical medical practice. Both doctors' and patients' autonomy need to be considered in the light of AI. (shrink)

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Vulnerability and politics are among the relevant and key topics of discussion in the Ethiopian healthcare context. Attempts by the formal bioethics structure in Ethiopia to deliberate on ethical issues relating to vulnerability and politics in healthcare have been limited, even though the informal analysis of bioethical issues has been present in traditional Ethiopian communities. This is reflected in religion, social values, and local moral underpinnings. Thus, the aim of this paper is to discuss the bioethical implications of vulnerability and (...) politics for healthcare in Ethiopia and to suggest possible ways forward. First, we will briefly introduce what has been done to develop bioethics as a field in Ethiopia and what gaps remain concerning its implementation in healthcare practice. This will give a context for our second and main task – analyzing the healthcare challenges in relation to vulnerability and politics and discussing their bioethical implications. In doing so, and since these two concepts are intrinsically broad, we demarcate their scope by focusing on specific issues such as poverty, gender, health governance, and armed conflicts. Lastly, we provide suggestions for the ways forward. (shrink)

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Informed consent is at the core of the clinical relationship. With the introduction of machine learning (ML) in healthcare, the role of informed consent is challenged. This paper addresses the issue of whether patients must be informed about medical ML applications and asked for consent. It aims to expose the discrepancy between ethical and practical considerations, while arguing that this polarization is a false dichotomy: in reality, ethics is applied to specific contexts and situations. Bridging this gap and considering the (...) whole picture is essential for advancing the debate. In the light of the possible future developments of the situation and the technologies, as well as the benefits that informed consent for ML can bring to shared decision-making, the present analysis concludes that it is necessary to prepare the ground for a possible future requirement of informed consent for medical ML. (shrink)

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Precision medicine is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning healthcare systems. Alongside its promises, PM also entails the risk of exacerbating healthcare inequalities, in particular between ethnoracial groups. One often-neglected underlying reason why this might happen is the impact of structural racism on PM (...) initiatives. Raising awareness as to how structural racism can influence PM initiatives is paramount to avoid that PM ends up reproducing the pre-existing health inequalities between different ethnoracial groups and contributing to the loss of trust in healthcare by minority groups. We analyse three nodes of a process flow where structural racism can affect PM’s implementation. These are: the collection of biased health data during the initial encounter of minority groups with the healthcare system and researchers, the integration of biased health data for minority groups in PM initiatives and the influence of structural racism on the deliverables of PM initiatives for minority groups. We underscore that underappreciation of structural racism by stakeholders involved in the PM ecosystem can be at odds with the ambition of ensuring social and racial justice. Potential specific actions related to the analysed nodes are then formulated to help ensure that PM truly adheres to the goal of leaving no one behind, as endorsed by member states of the United Nations for the 2030 Agenda for Sustainable Development. Structural racism has been entrenched in our societies for centuries and it would be naïve to believe that its impacts will not spill over in the era of PM. PM initiatives need to pay special attention to the discriminatory and harmful impacts that structural racism could have on minority groups involved in their respective projects. It is only by acknowledging and discussing the existence of implicit racial biases and trust issues in healthcare and research domains that proper interventions to remedy them can be implemented. (shrink)

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Emergence of novel genome engineering technologies such as clustered regularly interspaced short palindromic repeat has refocused attention on unresolved ethical complications of synthetic biology. Biosecurity concerns, deontological issues and human right aspects of genome editing have been the subject of in-depth debate; however, a lack of transparent regulatory guidelines, outdated governance codes, inefficient time-consuming clinical trial pathways and frequent misunderstanding of the scientific potential of cutting-edge technologies have created substantial obstacles to translational research in this area. While a precautionary principle (...) should be applied at all stages of genome engineering research, the stigma of germline editing, synthesis of new life forms and unrealistic presentation of current technologies should not arrest the transition of new therapeutic, diagnostic or preventive tools from research to clinic. We provide a brief review on the present regulation of CRISPR and discuss the translational aspect of genome engineering research and patient autonomy with respect to the “right to try” potential novel non-germline gene therapies. (shrink)

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Nanotechnology, which involves manipulation of matter on a ‘nano’ scale, is considered to be a key enabling technology. Medical applications of nanotechnology are expected to significantly improve disease diagnostic and therapeutic modalities and subsequently reduce health care costs. However, there is no consensus on the definition of nanotechnology or nanomedicine, and this stems from the underlying debate on defining ‘nano’. This paper aims to present the diversity in the definition of nanomedicine and its impact on the translation of basic science (...) research in nanotechnology into clinical applications. We present the insights obtained from exploratory qualitative interviews with 46 stakeholders involved in translational nanomedicine from Europe and North America. The definition of nanomedicine has implications for many aspects of translational research including: fund allocation, patents, drug regulatory review processes and approvals, ethical review processes, clinical trials and public acceptance. Given the interdisciplinary nature of the field and common interest in developing effective clinical applications, it is important to have honest and transparent communication about nanomedicine, its benefits and potential harm. A clear and consistent definition of nanomedicine would significantly facilitate trust among various stakeholders including the general public while minimizing the risk of miscommunication and undue fear of nanotechnology and nanomedicine. (shrink)

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Ensuring confidentiality is the cornerstone of trust within the doctor–patient relationship. However, health care providers have an obligation to serve not only their patient’s interests but also those of potential victims and society, resulting in circumstances where confidentiality must be breached. This article describes the attitudes of mental health professionals when patients disclose past crimes unknown to the justice system. Twenty-four MHPs working in Swiss prisons were interviewed. They shared their experiences concerning confidentiality practices and attitudes towards breaching confidentiality in (...) prison. Qualitative analysis revealed that MHPs study different factors before deciding whether a past crime should be disclosed, including: the type of therapy the prisoner-patient was seeking, the type of crime that is revealed, and the danger posed by the prisoner-patient. Based on this study’s findings, risk assessment of dangerousness was one of the most important factors determining disclosures of past crimes, taking into consideration both the type of therapy and the crime involved. Attitudes of MHPs varied with regard to confidentiality rules and when to breach confidentiality, and there was thus a lack of consensus as to when and whether past crimes should be reported. Hence, legal and ethical requirements concerning confidentiality breaches must be made clear and known to physicians in order to guide them with difficult cases. (shrink)

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A woman’s lack of or limited reproductive autonomy could lead to adverse health effects, feeling of being inferior, and above all being unable to adequately care for her children. Little is known about the reproductive autonomy of married Ikwerre women of Rivers State, Nigeria. This study demonstrates how Ikwerre women understand the terms autonomy and reproductive rights and what affects the exercise of these rights. An exploratory research design was employed for this study. A semi-structured interview schedule was used to (...) conduct thirty-four in-depth interviews and six focus group discussions with purposively sampled educated, semi-educated, and uneducated Ikwerre women in monogamous or polygynous marriages. The collected data was analysed qualitatively with MAXQDA 11 using open and axial coding. The interviews and focus group responses reveal a low level of awareness of autonomy and reproductive rights amongst the Ikwerre women in Nigeria. While some educated women were aware of their reproductive rights, cultural practices were reported to limit the exercise of these rights. Participants reported that Ikwerre culture is a patriarchal one where married women are expected to submit and obey their husbands in all matters; and a good married woman according to Ikwerre standard is one who complies with this culture. Women’s refusal of sexual advances from their husbands is described as not being acceptable in this culture; and hence rape in marriage is not recognized in Ikwerre culture. Education and awareness creation on the importance of women’s reproductive autonomy could improve their reproductive rights and autonomy in marital settings. Overcoming the patriarchal aspects of Ikwerre culture—for example, the greater value placed on male children than female children and treating women as incompetent individuals—is necessary to promote gender equality as well as help improve women’s reproductive autonomy. (shrink)

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This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples obtained from biobanks; (3) what constitutes “collective consent” to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the (...) findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices. (shrink)

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Health care in prison and particularly the health care of older prisoners are increasingly important topics due to the growth of the ageing prisoner population. The aim of this paper is to gain insight into the approaches used in the provision of equivalent health care to ageing prisoners and to confront the intuitive definition of equivalent care and the practical and ethical challenges that have been experienced by individuals working in this field. Forty interviews took place with experts working in (...) the prison setting from three Western European countries to discover their views on prison health care. Experts indicated that the provision of equivalent care in prison is difficult mostly due to four factors: variability of care in different prisons, gatekeeper systems, lack of personnel, and delays in providing access. This lack of equivalence can be fixed by allocating adequate budgets and developing standards for health care in prison. (shrink)

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Existing ethics guidelines, influential literature and policies on ethical research generally focus on real-time data collection from humans. They enforce individual rights and liberties, thereby lowering need for aggregate protections. Although dependable, emerging public health research paradigms like research using public health data raise new challenges to their application. Unlike traditional research, RUPD is population-based, aligned to public health activities, and often reliant on pre-collected longitudinal data. These characteristics, when considered in relation to the generally lower protective ethico-legal frameworks of (...) the Global South, including Africa, highlight ethical gaps. Health and demographic surveillance systems are examples of public health programs that accommodate RUPD in these contexts. We set out to explore the perspectives of professionals with a working knowledge of these systems to determine practical ways of appropriating the foundational principles of health research to advance the ever growing opportunities in RUPD. We present their perspectives and in relation to the literature and our ethical analysis, make context relevant recommendations. We further argue for the development of a framework founded on the discussions and recommendations as a minimum base for achieving optimal ethics for optimal RUPD in the Global South. (shrink)

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Clinical decision-making in old-age care is a complex and ethically sensitive process. Despite its importance, research addressing the challenges of clinical decision-making in old-age care within this cultural context is limited. This study aimed to explore the challenges and ethical concerns in clinical decision-making in old-age care in Ethiopia. This qualitative study employed an inductive approach with data collected via semi-structured interviews with 20 older patients and 26 health professionals recruited from healthcare facilities in Ethiopia. Data were analysed using reflexive (...) thematic analysis. Our analysis identified three key themes. First, participants highlighted perceptions that older patients’ religious beliefs interfere with the clinical decisions both older patients and health professionals make. Second, older patients often receive limited information from health professionals about their diagnosis and treatment. Third, families of older patients appear to strongly influence clinical decisions made by older patients or health professionals. This research enhances the understanding of clinical decision-making in old-age care within Ethiopia, a context where such research is scarce. As a result, this study contributes towards advancing the deliberation of ethical dilemmas that health professionals who work with older patients in Ethiopia might face. A key implication of the study is that there is a need for more ethics and cultural competence training for health professionals working with older patients in Ethiopia. (shrink)

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Data-sharing is a desired default in the field of public health and a source of much ethical deliberation. Sharing data potentially contributes the largest, most efficient source of scientific data, but is fraught with contextual challenges which make stakeholders, particularly those in under-resourced contexts hesitant or slow to share. Relatively little empirical research has engaged stakeholders in discussing the issue. This study sought to explore relevant experiences, contextual, and subjective explanations around the topic to provide a rich and detailed presentation (...) of what it means to different stakeholders and contexts to share data and how that can guide practice and ethical guidance. A qualitative design involving interviews was undertaken with professionals working in public health institutions endowed with data, ethics committees, and advisory agencies which help shape health research in Africa. A descriptive form of thematic analysis was used to summarize results into six key themes: The role of HDSSs in research using public health data and data-sharing; Ownership and funding are critical factors influencing data-sharing; Other factors discourage data-sharing; Promoting and sustaining data-sharing; Ethical guidance structures; and Establishing effective guidance. The themes reveal factors regarding the willingness or not to share and an intricate ethical system that current discourse could reflect. Many of the concerns resonate with the literature, but a whole other gamut of people and process issues; commitments, investments, careers, and the right ethical guidance are needed to realize a sustainable goal of reaching ‘share’ as a default. (shrink)

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Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in (...) relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. (shrink)

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The increasing integration of Machine Learning (ML) techniques into clinical care, driven in particular by Deep Learning (DL) using Artificial Neural Nets (ANNs), promises to reshape medical practice on various levels and across multiple medical fields. Much recent literature examines the ethical consequences of employing ML within medical and psychiatric practice but the potential impact on psychiatric diagnostic systems has so far not been well-developed. In this article, we aim to explore the challenges that arise from the recent use of (...) ANNs for the old problems of psychiatric nosology. To enable an empirically supported critical reflection on the topic, we conducted semi-structured qualitative interviews with Swiss and German experts in computational psychiatry. Here, we report our findings structured around two themes, namely (1) the possibility of using ML for defining or refining of psychiatric classification, and (2) the desirability of employing ML for psychiatric nosology. We discuss these themes by relating them to recent debates about network theory for psychiatric nosology and show why empirical research in the field should critically reflect on its contribution to psychopathology research. In sum, we argue that beyond technical, regulatory, and ethical challenges, philosophical reflection is crucial to harness the potential of ML in psychiatry. (shrink)

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Prisoners sometimes die in prison, either due to natural illness, violence, suicide, or a result of imprisonment. The purpose of this study is to understand deaths in custody using qualitative methodology and to argue for a comprehensive definition of death in custody that acknowledges deaths related to the prison environment. Interviews were conducted with 33 experts, who primarily work as lawyers or forensic doctors with national and/or international organisations. Responses were coded and analysed qualitatively. Defining deaths in custody according to (...) the place of death was deemed problematic. Experts favoured a dynamic approach emphasising the link between the detention environment and occurrence of death rather than the actual place of death. Causes of deaths and different patterns of deaths were discussed, indicating that many of these deaths are preventable. Lack of an internationally recognised standard definition of death in custody is a major concern. Key aspects such as place, time, and causes of death as well as relation to the prison environment should be debated and incorporated into the definition. Systematic identification of violence within prison institutions is critical and efforts are needed to prevent unnecessary deaths in prison and to protect vulnerable prisoners. (shrink)

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Healthcare cybersecurity is increasingly targeted by malicious hackers. This sector has many vulnerabilities and health data is very sensitive and valuable. Consequently, any damage caused by malicious intrusions is particularly alarming. The consequences of these attacks can be enormous and endanger patient care. Amongst the already-implemented cybersecurity measures and the ones that need to be further improved, this paper aims to demonstrate how penetration tests can greatly benefit healthcare cybersecurity. It is already proven that this approach has enforced cybersecurity in (...) other sectors. However, it is not popular in healthcare since many prejudices still surround the hacking practice and there is a lack of education on hackers’ categories and their ethics. The present analysis aims to comprehend what hacker ethics is and who ethical hackers are. Currently, hacker ethics has the status of personal ethics; however, to employ penetration testers in healthcare, it is recommended to draft an official code of ethics, comprising principles, standards, expectations, and best practices. Additionally, it is important to distinguish between malicious hackers and ethical hackers. Amongst the latter, penetration testers are only a sub-category. Acknowledging the subtle differences between ethical hackers and penetration testers allows to better understand why and how the latter can offer their services to healthcare facilities. (shrink)

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Advances at the interface between the biological sciences and engineering are giving rise to emerging research fields such as synthetic biology. Harnessing the potential of synthetic biology requires timely and adequate translation into clinical practice. However, the translational research enterprise is currently facing fundamental obstacles that slow down the transition of scientific discoveries from the laboratory to the patient bedside. These obstacles including scarce financial resources and deficiency of organizational and logistic settings are widely discussed as primary impediments to translational (...) research. In addition, a number of socio-ethical considerations inherent in translational research need to be addressed. As the translational capacity of synthetic biology is tightly linked to its social acceptance and ethical approval, ethical limitations may—together with financial and organizational problems—be co-determinants of suboptimal translation. Therefore, an early assessment of such limitations will contribute to proactively favor successful translation and prevent the promising potential of synthetic biology from remaining under-expressed. Through the discussion of two case-specific inventions in synthetic biology and their associated ethical implications, we illustrate the socio-ethical challenges ahead in the process of implementing synthetic biology into clinical practice. Since reducing the translational lag is essential for delivering the benefits of basic biomedical research to society at large and promoting global health, we advocate a moral obligation to accelerating translational research: the “translational imperative.”. (shrink)

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The author group of above-mentioned review paper was incorrectly published in the online article.

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Cancer registries are an important part of the public health infrastructure, since they allow to monitor the temporal trends of this illness as well as facilitate epidemiological research. In order to effectively set up such registries, it is necessary to create a system of data collection that permits to record health-related information from patients who are diagnosed with cancer. Given the sensitive nature of such data, it is debated whether their recording should be based on consent or whether alternative arrangements (...) are possible (eg, opt-out systems where information is automatically collected but patients can later withdraw). In the recent reform of the Swiss cancer registration legislation, the lawmaker set out to implement rules about the recording of data in cancer registries that would allegedly go beyond a consent-based model, in order to balance accurate registration with respect of patient rights. However, by analysing the operational norms of the new legislation and comparing them with those of other systems, it emerges that the Swiss rules de facto closely resemble a system of registration based on informed consent—in partial contradiction with the objective pursued by the lawmaker. In this paper, we show how the details of a policy are crucial to determine its true nature and we highlight some critical elements—from an ethical standpoint—of the recently reformed Swiss policy on cancer registration. (shrink)

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