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Objective: The COVID-19 pandemic has brought severe health consequences among older adults and posed ethical challenges. The aim of this study was to explore the impacts of COVID-19 on the health and medical care of older adults in Ethiopia and associated ethical implications, regardless of older adults' COVID-19 infection status. Methods: In this qualitative study, we followed an inductive exploratory approach based on reflexive thematic analysis. We conducted semistructured interviews between March 2021 and November 2021 with 20 older adults and 26 health professionals who were selected from healthcare facilities and communities in Ethiopia using purposive and snowball sampling techniques. We audio-recorded, transcribed, translated, and inductively analyzed the interviews using thematic analysis. Results: Participants reported that the pandemic compromised the accessibility and quality of both COVID and non-COVID healthcare services for older adults, which negatively impacted older adults' health conditions and medical care. Moreover, participants elaborated on the health conditions and care of older patients with COVID-19 and highlighted that older COVID-19 patients often have severe health conditions, do not get adequate COVID-19 care, and may receive lower priority for admission to intensive care units compared to younger patients when resources are limited. Conclusions: Results of this study showed that practices of COVID-19 care and measures may have led to adverse consequences such as limited availability and access to aged care in Ethiopia, which could have further health consequences on older patients. Our results contribute to a better understanding of ethical issues such as distributive justice and prioritization arising in the healthcare of older patients in times of global pandemic. It is imperative for local and international health policymakers and ethicists to further analyze and address the challenges that compromise the accessibility and continuity of quality care for older persons during a public healthcare crisis.
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BACKGROUND: The discourse surrounding medical artificial intelligence (AI) often focuses on narratives that either hype the technology's potential or predict dystopian futures. AI narratives have a significant influence on the direction of research, funding, and public opinion and thus shape the future of medicine. OBJECTIVE: The paper aims to offer critical reflections on AI narratives, with a specific focus on medical AI, and to raise awareness as to how people working with medical AI talk about AI and discharge their "narrative responsibility." METHODS: Qualitative semistructured interviews were conducted with 41 participants from different disciplines who were exposed to medical AI in their profession. The research represents a secondary analysis of data using a thematic narrative approach. The analysis resulted in 2 main themes, each with 2 other subthemes. RESULTS: Stories about the AI-physician interaction depicted either a competitive or collaborative relationship. Some participants argued that AI might replace physicians, as it performs better than physicians. However, others believed that physicians should not be replaced and that AI should rather assist and support physicians. The idea of excessive technological deferral and automation bias was discussed, highlighting the risk of "losing" decisional power. The possibility that AI could relieve physicians from burnout and allow them to spend more time with patients was also considered. Finally, a few participants reported an extremely optimistic account of medical AI, while the majority criticized this type of story. The latter lamented the existence of a "magical theory" of medical AI, identified with techno-solutionist positions. CONCLUSIONS: Most of the participants reported a nuanced view of technology, recognizing both its benefits and challenges and avoiding polarized narratives. However, some participants did contribute to the hype surrounding medical AI, comparing it to human capabilities and depicting it as superior. Overall, the majority agreed that medical AI should assist rather than replace clinicians. The study concludes that a balanced narrative (that focuses on the technology's present capabilities and limitations) is necessary to fully realize the potential of medical AI while avoiding unrealistic expectations and hype.
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In Switzerland, the importance of transparency in animal experimentation is emphasized by the Swiss Federal Council, recognizing the public's great interest in this matter. Federal reporting on animal experimentation indicates a total of 585,991 animals used in experiments in Switzerland in 2022. By Swiss law, the report enables the public to learn about many aspects such as the species and degree of suffering experienced by the animals, but some information of interest to the public is missing, such as the fate of the animals at the end of the experiment (e.g., euthanized, rehomed in a private home, reused in another experiment). When it comes to animals bred in facilities but not used in experiments, further information of interest is not required to be made public according to Swiss law, for example, the number and fate of "surplus" animals (i.e., animals bred but not used in experiments for a variety of reasons such as not carrying the phenotypical properties needed). Considering that the Swiss government has a duty to provide a full accounting of animal experimentation conducted on the public's behalf, further relevant information should be disclosed. While efforts toward transparency, such as the STAAR Agreement, have been made in the scientific community, these mostly reflect the legal requirements already in force. If Switzerland is to move toward more transparency in public information on animal experimentation, an update of the legal requirements is needed. In this article, we give recommendations for Swiss law to move toward more transparency in public information on seven aspects: (1) the fate of the animals at the end of the experiment; (2) the sources of funding for animal experimentation; (3) the harm-benefit analysis performed by researchers and ethics committees to justify an experiment using animals; (4) the number of breeding/surplus animals; (5) the fate of breeding/surplus animals; (6) the harms experienced by animals in facilities; and (7) the funding of animal facilities.
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BACKGROUND: The intent of plain-language resources (PLRs) reporting medical research information is to advance health literacy among the general public and enable them to participate in shared decision-making (SDM). Regulatory mandates coupled with academic and industry initiatives have given rise to an increasing volume of PLRs summarizing medical research information. However, there is significant variability in the quality, format, readability, and dissemination channels for PLRs. In this scoping review, we identify current practices, guidance, and barriers in developing and disseminating PLRs reporting medical research information to the general public including patients and caregivers. We also report on the PLR preferences of these intended audiences. METHODS: A literature search of three bibliographic databases (PubMed, EMBASE, Web of Science) and three clinical trial registries (NIH, EMA, ISRCTN registry) was performed. Snowball searches within reference lists of primary articles were added. Articles with PLRs or reporting topics related to PLRs use and development available between January 2017 and June 2023 were identified. Evidence mapping and synthesis were used to make qualitative observations. Identified PLRs were quantitatively assessed, including temporal annual trends, availability by field of medicine, language, and publisher types. RESULTS: A total of 9116 PLRs were identified, 9041 from the databases and 75 from clinical trial registries. The final analysis included 6590 PLRs from databases and 72 from registries. Reported barriers to PLR development included ambiguity in guidance, lack of incentives, and concerns of researchers writing for the general public. Available guidance recommendations called for greater dissemination, increased readability, and varied content formats. Patients preferred visual PLRs formats (e.g., videos, comics), which were easy to access on the internet and used short jargon-free text. In some instances, older audiences and more educated readers preferred text-only PLRs. Preferences among the general public were mostly similar to those of patients. Psychology, followed by oncology, showed the highest number of PLRs, predominantly from academia-sponsored research. Text-only PLRs were most commonly available, while graphical, digital, or online formats were less available. Preferred dissemination channels included paywall-free journal websites, indexing on PubMed, third-party websites, via email to research participants, and social media. CONCLUSIONS: This scoping review maps current practices, recommendations, and patients' and the general public's preferences for PLR development and dissemination. The results suggest that making PLRs available to a wider audience by improving nomenclature, accessibility, and providing translations may contribute to empowerment and SDM. Minimizing variability among available guidance for PLR development may play an important role in amplifying the value and impact of these resources.
Plain-language resources (PLRs) can help people understand medical research information. This will allow them to make informed decisions about their health. However, PLRs vary in quality, format, and ways in which they are shared. In this study, researchers looked at how PLRs are made and publicly shared. They also studied what makes PLRs useful for the public and patients. Creating PLRs is not easy because of unclear guidelines on writing for the public. Using different formats and languages can make PLRs readable. Patients preferred PLRs as videos and comics. Older and educated readers liked text-only PLRs. The fields of psychology and oncology had the highest number of PLRs. Text-only PLRs were more common than digital or online formats. PLRs should be easily and freely accessible. Open-access journal websites, PubMed, third-party websites, email, and social media can be used to share PLRs. This study showed that PLRs can be helpful, but there are challenges in creating and sharing them. Good PLRs can inform patients and help them make better health-related decisions.
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Investigación Biomédica , Difusión de la Información , Humanos , Investigación Biomédica/normas , Alfabetización en Salud , LenguajeRESUMEN
The use of nonhuman animals in biomedical research is regulated under stringent conditions, not only in response to societal attitudes towards animal experimentation but also because ethical responsibility in scientific research requires researchers and veterinarians to be more invested and aim to improve the welfare of animals used for experiments. Analyses of animal research oversight reveal the frequent approval of experiments, and the approval of some experiments has raised and continues to raise public concerns. Societal compliance is required for a consensus-based approach to animal research policy, prompting the need to have transparent discussions about oversight and the frequency of approvals. We discuss how frequent approval may be perceived and why it seems problematic from a societal perspective: the regulatory process exists to approve only legitimate experiments. Although some experiments remain unacceptable irrespective of their harm-benefit ratios, almost all experiments are approved. We explain some possible legitimate reasons for frequent approval and how the review process could be leading to the approval of illegitimate studies. To ensure transparency and improve public trust and understanding of oversight, we propose the adoption of a platform to inform society about how unethical experiments are screened out.
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BACKGROUND: We tested the hypothesis of supporters of assisted dying that assisted suicide (AS) might be able to prevent cases of conventional suicide (CS). METHODS: By using data from the Federal Statistical Office, we analyzed the long-term development of 30,756 self-initiated deaths in Switzerland over a 20-year period (1999-2018; CS: n = 22,018, AS: n = 8738), focusing on people suffering from cancer who died from AS or CS. RESULTS: While cancer was the most often listed principal disease for AS (n = 3580, 41.0% of AS cases), cancer was listed in only a small minority of CS cases (n = 832, 3.8% of CS cases). There was a significant increase in the absolute number of cancer-associated AS cases: comparing four 5-year periods, there was approximately a doubling of cases every 5 years (1999-2003: n = 228 vs.2004-2008: n = 474, +108% compared with the previous period; 2009-2013: n = 920, +94%; 2014-2018: n = 1958, +113%). The ratio of cancer-associated AS in relationship with all cancer-associated deaths increased over time to 2.3% in the last observation period (2014-2018). In parallel, the numbers of cancer-associated CS showed a downward trend only at the beginning of the observation period (1999-2003, n = 240 vs. 2004-2008, n = 199, -17%). Thereafter, the number of cases remained stable in the subsequent 5-year period (2009-2013, n = 187, -6%), and increased again toward the most recent period (2014-2018, n = 206, +10%). CONCLUSION: The assumption that, with the increasingly accessible option of AS for patients with cancer, CS suicide will become "superfluous" cannot be confirmed. There are strong reasons indicating that situations and circumstances of cancer-associated CS are different from those for cancer-associated AS.
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Neoplasias , Suicidio Asistido , Humanos , Suiza/epidemiología , Neoplasias/epidemiologíaRESUMEN
Introduction: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate - from ethico-legal and socio-cultural perspectives - the sharing and reuse of data for research purposes in Switzerland. Methods: A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. Results: First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. Conclusions: After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large.
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BACKGROUND: Incarcerated persons rank themselves according to the crime they have committed. Due to which, those lower in this hierarchy (e.g., paedophiles) are bullied. The goal of this paper was to better knowledge on older incarcerated adults' experiences of crime and social hierarchy in prisons. METHODS: Our results comprise data from 50 semi-structured interviews with older incarcerated persons. Data was assessed following thematic analysis. RESULTS: Our research showed that crime hierarchy occurs in prison and is recognized by older incarcerated individuals. Also, a social hierarchy based on various characteristics (e.g., ethnicity, education, language, mental health) is established within detention centres. This hierarchy is put forth by all persons deprived of liberty, but mostly by the ones at the bottom of the crime hierarchy, thus using it to portray themselves as better human beings than other incarcerated adults. They use the social hierarchy to cope with bullying whilst exhibiting coping mechanisms, such as the narcissistic facade. A concept we put forth as a novel idea. DISCUSSION: Our results show that crime hierarchy prevails in prison. Also, we explain the social hierarchy based on ethnicity, education, and other characteristics. Hence, being a victim of bullies, make lower-ranked (on the crime hierarchy) persons resort to social hierarchy to portray themselves as better individuals. This should not be considered as a personality disorder, but rather a narcissistic facade.
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Acoso Escolar , Víctimas de Crimen , Prisioneros , Adulto , Humanos , Salud Mental , Suiza , Víctimas de Crimen/psicología , Crimen , Adaptación Psicológica , Prisiones , Prisioneros/psicologíaRESUMEN
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.
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Inteligencia Artificial , Médicos , Humanos , Toma de Decisiones Conjunta , Relaciones Médico-Paciente , Paternalismo , Toma de DecisionesRESUMEN
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.
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Vida Independiente , Medicina , Humanos , Anciano , Anciano de 80 o más Años , Privacidad , TecnologíaRESUMEN
The growing amount of data produced through digital technologies holds great promise for advancing behavioral research. Scholars worldwide now have the chance to access an incredible amount of personal information, thanks to the digital trace users continuously leave behind them. Private corporations play a crucial role in this scenario as the leading collectors of data on users, thus creating new incentives for partnerships between academic institutions and private companies. Due to the concerns that academic-company partnerships might raise and the ethical issues connected with Big Data research, our study explores the challenges and opportunities associated with the academic use of corporate data. We conducted 39 semi-structured interviews with academic scholars (professors, senior researchers, and postdocs) involved in Big Data research in Switzerland and the United States. We also investigated their opinions on using corporate data for scholarly research. Researchers generally showed an interest in using corporate data; however, they coincidentally shared ethical reservations towards this practice, such as threats to research integrity and concerns about a lack of transparency of companies' practices. Furthermore, participants mentioned issues of scholarly access to corporate data that might both disadvantage the academic research community and create issues of scientific validity. Academic-company partnerships could be a positive development for the advancement of scholarly behavioral research. However, strategies should be implemented to appropriately guide collaborations and appropriate use of corporate data, like implementing updated protocols and tools to govern conflicts of interest and the institution of transparent regulatory bodies to ensure adequate oversight of academic-corporate research collaborations.
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Investigación Conductal , Macrodatos , Humanos , Estados Unidos , Industrias , Ética en los Negocios , OrganizacionesRESUMEN
Artificial intelligence (AI) has only partially (or not at all) been integrated into medical education, leading to growing concerns regarding how to train healthcare practitioners to handle the changes brought about by the introduction of AI. Programming lessons and other technical information into healthcare curricula has been proposed as a solution to support healthcare personnel in using AI or other future technology. However, integrating these core elements of computer science knowledge might not meet the observed need that students will benefit from gaining practical experience with AI in the direct application area. Therefore, this paper proposes a dynamic approach to case-based learning that utilizes the scenarios where AI is currently used in clinical practice as examples. This approach will support students' understanding of technical aspects. Case-based learning with AI as an example provides additional benefits: (1) it allows doctors to compare their thought processes to the AI suggestions and critically reflect on the assumptions and biases of AI and clinical practice; (2) it incentivizes doctors to discuss and address ethical issues inherent to technology and those already existing in current clinical practice; (3) it serves as a foundation for fostering interdisciplinary collaboration via discussion of different views between technologists, multidisciplinary experts, and healthcare professionals. The proposed knowledge shift from AI as a technical focus to AI as an example for case-based learning aims to encourage a different perspective on educational needs. Technical education does not need to compete with other essential clinical skills as it could serve as a basis for supporting them, which leads to better medical education and practice, ultimately benefiting patients.
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Educación Médica , Médicos , Humanos , Inteligencia Artificial , Aprendizaje , Personal de SaludRESUMEN
Whether there should be restrictions for access to Assisted Reproductive Technologies (ART) is a matter of continuous medical, societal, and ethico-legal debate. One of the most controversial topics in this context is the use of parental age as a criterion to limit access to ART. Views are divided on whether there should be an upper age limit for one or both parents and on where such limits should be. Although this debate is centered around the issue of 'age' and although age-related limits are present in many legislations, the intrinsic ambiguity of the term `age' is largely overlooked. In this article, we build on gerontological, medical, and sociological literature on the concepts of 'age' and 'aging' to distinguish three conceptions of age that are relevant for ART regulation: the chronological, the biological, and the social-cultural one. Beyond mapping out these conceptions of age, we describe how they relate to ART and reproduction, and illustrate the advantages and disadvantages of relying on each of them as a basis for limiting ART access. Finally, we propose a template for defining legal age limits for ART access in the law, based on the refined understanding of the different conceptions of age that we outline and we discuss two potential objections to our proposal.
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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.
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Seguridad Computacional , Atención a la Salud , Humanos , Instituciones de SaludRESUMEN
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.
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Bioética , Política , Humanos , Etiopía , Atención a la Salud , Religión , Discusiones BioéticasRESUMEN
Introduction: The aging population is rapidly increasing globally, with 80% of the older population living in low- and middle-income countries. In Eastern African countries, there exists an incongruence between readiness-economically, structurally, politically, and culturally-to create a conducive environment for healthy aging, which implies public health as well as ethical concerns. The aim of this scoping review was to explore existing evidence addressing the various ethical issues in connection with elder care in the region of Eastern Africa. Methods: We searched six databases (Africa-Wide Information, AgeLine, CINHAL, MEDLINE, APA PsycInfo, and SocINDEX) to identify peer-reviewed journal articles that could meet some eligibility criteria such as being a peer-reviewed journal article written in English, having been published in any year until July 2020, and focusing on ethical issues in the care of older people aged 60 years and older from Eastern Africa. We also searched for additional evidence in the references of included papers and web-based platforms. We included 24 journal articles and analyzed them using the inductive content analysis approach. Results: The included articles represent seven (38.9%) of the 18 countries in the Eastern African region. The articles covered six ethical concerns: lack of government attention to older persons (n = 14, 58.3%), inaccessibility of health care services (n = 13, 54.2%), loneliness and isolation (n = 11, 45.8%), gender inequalities in old age (n = 9, 37.5%), mistreatment and victimization (n = 8, 33.3%), and medical errors (n = 2, 8.3%). Conclusion: This scoping review summarized ethical issues arising in relation to providing care for older persons in the Eastern African context. In light of the rapid increase in the number of older persons in this region, it is critical for governments and responsible bodies to implement and accelerate efforts promptly to generate more evidence to inform programs and policies that improve the health and wellbeing of older persons. Further research is needed to inform global health efforts that aim at improving the lives of older persons, particularly in low- and middle-income countries. Clinical Trial Registration: https://osf.io/sb8gw, identifier: 10.17605/OSF.IO/SB8GW.
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Renta , África Oriental , Anciano , Anciano de 80 o más Años , Humanos , Persona de Mediana EdadRESUMEN
Using artificial intelligence to improve patient care is a cutting-edge methodology, but its implementation in clinical routine has been limited due to significant concerns about understanding its behavior. One major barrier is the explainability dilemma and how much explanation is required to use artificial intelligence safely in healthcare. A key issue is the lack of consensus on the definition of explainability by experts, regulators, and healthcare professionals, resulting in a wide variety of terminology and expectations. This paper aims to fill the gap by defining minimal explainability standards to serve the views and needs of essential stakeholders in healthcare. In that sense, we propose to define minimal explainability criteria that can support doctors' understanding, meet patients' needs, and fulfill legal requirements. Therefore, explainability need not to be exhaustive but sufficient for doctors and patients to comprehend the artificial intelligence models' clinical implications and be integrated safely into clinical practice. Thus, minimally acceptable standards for explainability are context-dependent and should respond to the specific need and potential risks of each clinical scenario for a responsible and ethical implementation of artificial intelligence.
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The COVID-19 pandemic has revealed deeply entrenched structural inequalities that resulted in an excess of mortality and morbidity in certain racial and ethnic groups in the United States. Therefore, this paper examines from the US perspective how structural racism and defective data collection on racial and ethnic minorities can negatively influence the development of precision public health (PPH) approaches to tackle the ongoing COVID-19 pandemic. Importantly, the effects of structural and data racism on the development of fair and inclusive data-driven components of PPH interventions are discussed, such as with the use of machine learning algorithms to predict public health risks. The objective of this viewpoint is thus to inform public health policymaking with regard to the development of ethically sound PPH interventions against COVID-19. Particular attention is given to components of structural racism (eg, hospital segregation, implicit and organizational bias, digital divide, and sociopolitical influences) that are likely to hinder such approaches from achieving their social justice and health equity goals.
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COVID-19 , Equidad en Salud , Recolección de Datos , Humanos , Pandemias , Salud Pública , SARS-CoV-2 , Racismo Sistemático , Estados Unidos/epidemiologíaRESUMEN
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.
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Neoplasias , Derechos del Paciente , Humanos , Suiza/epidemiología , Consentimiento Informado , Sistema de Registros , ConfidencialidadRESUMEN
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.