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Biomarkers for predicting Alzheimer's disease (AD) are advancing and their implementation in various healthcare systems is imminent. There is a need for ethical standards addressing information needs, socio-ethical concerns, and expectations of healthy and at-risk persons. We present an ethical approach that integrates different existing ethical frameworks and discussion of our empirical, cross-cultural findings in a multi-layered perspective by addressing three levels. The micro-level focuses on the communication between counseling professionals, persons at risk or in an early stage of dementia, and family members. The meso-level addresses interprofessional cooperation and exchange as a key element for best person-centered care. The macro-level considers public health promotion, the media, and public-funded research. This approach allows to address key ethical concepts including beneficence, non-maleficence, autonomy, informational self-determination, empowerment, and justice. Our contribution specifically examines the ethical challenges associated with AD prediction by means of biomarkers, based on insights from a German-Israeli comparison, and promotes a transdisciplinary discussion across different healthcare contexts. We propose a reflection on three levels to go beyond the clinical counseling context and to consider the rapidly evolving field of biomarkers in the coming years. Our ethical-practical recommendations should not be considered final, but rather procedural and will require continuous adaptation regarding culturally varying practices, new algorithms, meta-analyses, and re-evaluation of established recommendations.

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BACKGROUND: Technological advances in robotics, artificial intelligence, cognitive algorithms, and internet-based coaches have contributed to the development of devices capable of responding to some of the challenges resulting from demographic aging. Numerous studies have explored the use of robotic coaching solutions (RCSs) for supporting healthy behaviors in older adults and have shown their benefits regarding the quality of life and functional independence of older adults at home. However, the use of RCSs by individuals who are potentially vulnerable raises many ethical questions. Establishing an ethical framework to guide the development, use, and evaluation practices regarding RCSs for older adults seems highly pertinent. OBJECTIVE: The objective of this paper was to highlight the ethical issues related to the use of RCSs for health care purposes among older adults and draft recommendations for researchers and health care professionals interested in using RCSs for older adults. METHODS: We conducted a narrative review of the literature to identify publications including an analysis of the ethical dimension and recommendations regarding the use of RCSs for older adults. We used a qualitative analysis methodology inspired by a Health Technology Assessment model. We included all article types such as theoretical papers, research studies, and reviews dealing with ethical issues or recommendations for the implementation of these RCSs in a general population, particularly among older adults, in the health care sector and published after 2011 in either English or French. The review was performed between August and December 2021 using the PubMed, CINAHL, Embase, Scopus, Web of Science, IEEE Explore, SpringerLink, and PsycINFO databases. Selected publications were analyzed using the European Network of Health Technology Assessment Core Model (version 3.0) around 5 ethical topics: benefit-harm balance, autonomy, privacy, justice and equity, and legislation. RESULTS: In the 25 publications analyzed, the most cited ethical concerns were the risk of accidents, lack of reliability, loss of control, risk of deception, risk of social isolation, data confidentiality, and liability in case of safety problems. Recommendations included collecting the opinion of target users, collecting their consent, and training professionals in the use of RCSs. Proper data management, anonymization, and encryption appeared to be essential to protect RCS users' personal data. CONCLUSIONS: Our analysis supports the interest in using RCSs for older adults because of their potential contribution to individuals' quality of life and well-being. This analysis highlights many ethical issues linked to the use of RCSs for health-related goals. Future studies should consider the organizational consequences of the implementation of RCSs and the influence of cultural and socioeconomic specificities of the context of experimentation. We suggest implementing a scalable ethical and regulatory framework to accompany the development and implementation of RCSs for various aspects related to the technology, individual, or legal aspects.

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Medical ethics underpin the moral framework that delineates the professional relationship between physicians and their patients and thereby is an integral part of making patient-centric healthcare decisions. The concept of ethics is deeply embedded in the field of surgery as surgeons confront a myriad of dilemmas as a part of their routine, whether it be in a preoperative or postoperative environment. The current review aims to describe the state of surgical ethics in Pakistan, with the intent of encouraging dialogues about the ethical considerations relevant to the field surgery that will identify actionable areas for improvement. While most surgeons are aware of the traditional principles of ethics and their practice, their surgical and clinical decisions may fall short of these standards because of time constraints and prevailing cultural and religious beliefs and taboos. The rigorous application of ethical principles in areas of patient-related communication, such as consenting, trainee education, palliative and end-of-life care, and surgical innovation and research, will have significant implications for patients, surgeons, and society. Our review has identified the lack of formal bioethics education and insufficient oversight and ethical regulations to be at the core of inadequate ethical practices in Pakistan and has highlighted actionable areas to be addressed in the future.

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Introducción: Los contextos rurales presentan desafíos significativos en la investigación en cuidados debido a su diversidad y visiones culturales únicas, lo que requiere una sólida formación ética. Objetivo: Sintetizar recomendaciones éticas para la investigación en cuidados en comunidades rurales, basándose en experiencias publicadas entre 2000 y 2023. Metodología: Se llevó a cabo una revisión integrativa de artículos originales indexados en cuatro bases de datos. Resultados: Fueron seleccionados 26 artículos, cuyas recomendaciones éticas se sintetizaron siguiendo los criterios de Emanuel. Discusión: La ética en la investigación en cuidados en contextos rurales promueve el diálogo colaborativo y el respeto mutuo. Los desafíos surgen de las diferencias culturales, percepciones negativas y dinámicas de poder. Se sugiere la implementación de enfoques participativos, aunque enfrentan dificultades en términos de tiempo, costos y manejo de poder. Los investigadores deben ser sensibles a las normas culturales y respetar el contexto de las comunidades rurales.(AU)

Introduction: Rural contexts present significant challenges in care research due to their unique cultural diversity and perspectives, demanding a strong ethical foundation. Objective: To synthesize ethical recommendations for care research in rural communities based on experiences published between 2000 and 2023. Methodology: An integrative review of original articles indexed in four databases. Results: 26 articles were selected, and their ethical recommendations were synthesized following Emanuel's criteria. Discussion: Ethical considerations in care research in rural settings promote collaborative dialogue and mutual respect. Challenges arise from cultural differences, negative perceptions, and power dynamics. Implementing participatory approaches is suggested, though it faces difficulties in terms of time, costs, and power management. Researchers should be sensitive to cultural norms and respect the context of rural communities.(AU)

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BACKGROUND: The H2020 i-CONSENT project has developed a set of guidelines that offer ethical recommendations and practical tools aimed at making the informed consent process in clinical studies more comprehensive, tailored, and inclusive. An analysis of the appropriateness of some of its novel recommendations was carried out by a group of experts representing different stakeholders. METHODS: An adaptation of the RAND/UCLA Appropriateness Method was used to assess the level of agreement on the recommendations among 14 representatives of different stakeholders, including patients, regulators, investigators, ethics experts, and the pharmaceutical industry. The process included two rounds of rating and a virtual meeting. RESULTS: Fifty-three recommendations were evaluated. After the first round, 34 recommendations were judged "appropriate"; 19 were judged "uncertain"; and none was judged "inappropriate". After the second round, 9 "uncertains" changed to "appropriate". All recommendations rated medians of 6.5-9 on a 1-9 scale (1 = "extremely inappropriate", 5 = "uncertain", 9 = "extremely appropriate"). The sections "General recommendations" and "Gender perspective during the consent process for clinical studies" showed the highest "uncertainty" rating. The four keys to improving the understanding of the ICP in clinical studies are to: (1) consider consent a two-way continuous interaction that begins at the first contact with the potential participant and continues until the end of the study; (2) improve investigators' communication skills; (3) co-create the information; and (4) use a layered approach, including information to compensate for the potential participant's possible lack of health literacy and a glossary of terms. CONCLUSIONS: The RAND/UCLA method has demonstrated validity for assessing the appropriateness of recommendations in ethical guidelines. The recommendations of the i-CONSENT guidelines were mostly judged "appropriate" by all stakeholders involved in the informed consent process.

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In 2017 the Swiss federal government established the Swiss Personalized Health Network (SPHN), a nationally coordinated data infrastructure for genetic research. The SPHN advisory group on Ethical, Legal, and Social Implications (ELSI) was tasked with the creation of a recommendation to ensure ethically responsible reporting of genetic research findings to research participants in SPHN-funded studies. Following consultations with expert stakeholders, including geneticists, pediatricians, sociologists, university hospitals directors, patient representatives, consumer protection associations, and insurers, the ELSI advisory group issued its recommendation on "Reporting actionable genetic findings to research participants" in May 2020. In this paper we outline the development of this recommendation and the provisions it contains. In particular, we discuss some of its key features, namely: (1) that participation in SPHN-funded studies as a research subject is conditional to accepting that medically relevant genetic research findings will be reported; (2) that a Multidisciplinary Expert Panel (MEP) should be created to support researchers' decision-making processes about reporting individual genetic research findings; (3) that such Multidisciplinary Expert Panel will make case-by-case decisions about whether to allow reporting of genetic findings, instead of relying on a pre-defined list of medically relevant variants; (4) that research participants shall be informed of the need to disclose genetic mutations when applying for private insurance, which may influence individual decisions about participation in research. By providing an account of the procedural background and considerations leading to the SPHN recommendation on "Reporting actionable genetic findings to research participants," we seek to promote a better understanding of the proposed guidance, as well as to contribute to the global dialog on the reporting of genetic research findings.

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BACKGROUND: Placebo and nocebo effects occur in clinical or laboratory medical contexts after administration of an inert treatment or as part of active treatments and are due to psychobiological mechanisms such as expectancies of the patient. Placebo and nocebo studies have evolved from predominantly methodological research into a far-reaching interdisciplinary field that is unravelling the neurobiological, behavioural and clinical underpinnings of these phenomena in a broad variety of medical conditions. As a consequence, there is an increasing demand from health professionals to develop expert recommendations about evidence-based and ethical use of placebo and nocebo effects for clinical practice. METHODS: A survey and interdisciplinary expert meeting by invitation was organized as part of the 1st Society for Interdisciplinary Placebo Studies (SIPS) conference in 2017. Twenty-nine internationally recognized placebo researchers participated. RESULTS: There was consensus that maximizing placebo effects and minimizing nocebo effects should lead to better treatment outcomes with fewer side effects. Experts particularly agreed on the importance of informing patients about placebo and nocebo effects and training health professionals in patient-clinician communication to maximize placebo and minimize nocebo effects. CONCLUSIONS: The current paper forms a first step towards developing evidence-based and ethical recommendations about the implications of placebo and nocebo research for medical practice, based on the current state of evidence and the consensus of experts. Future research might focus on how to implement these recommendations, including how to optimize conditions for educating patients about placebo and nocebo effects and providing training for the implementation in clinical practice.

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