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An overview of ethics and clinical ethics is presented in this review. The 4 main ethical principles, that is beneficence, nonmaleficence, autonomy, and justice, are defined and explained. Informed consent, truth-telling, and confidentiality spring from the principle of autonomy, and each of them is discussed. In patient care situations, not infrequently, there are conflicts between ethical principles (especially between beneficence and autonomy). A four-pronged systematic approach to ethical problem-solving and several illustrative cases of conflicts are presented. Comments following the cases highlight the ethical principles involved and clarify the resolution of these conflicts. A model for patient care, with caring as its central element, that integrates ethical aspects (intertwined with professionalism) with clinical and technical expertise desired of a physician is illustrated.

This paper discusses the potential harms involved in biobank research and how ethical review, informed consent, withdrawals, and anonymization of samples should be handled in the light of these harms. There is less risk involved in biobank research than in human subject research; it should therefore be treated differently. In our view, anonymization should not be an automatically permissible response to requests for withdrawal. Nor should a request for withdrawal necessarily stop research on identifiable samples. Apart from not being particularly appropriate for protecting the interests of individuals, anonymization of samples has a negative impact on research. We suggest that the current view on withdrawal from research, supported by the Declaration of Helsinki and subsequent ethical guidelines, be abandoned in the context of biobank research and be replaced by an approach inspired by the Nuremberg Code. This approach requires those wishing to withdraw their samples from research to present sufficient reason for doing so. Our interpretation of ‘sufficient reason’ includes all those involving genuine, deeply felt concerns that are not based on misconceptions. Still, this underlines the fact that we all share a responsibility for health research and that no one should take withdrawal from biobank research lightly.

Governments need to think twice before they suppress messages related to COVID-19. Governments need to think twice before they suppress messages related to COVID-19.

[...]Bluetooth signals that show the proximity of two individuals' mobile phones are not a certain indicator of infection risk - two people might be in the same space but physically separated, for example, by a wall. Lack of consideration of ethics could erode trust in the government and public-health services - as happened last month, when the Norwegian Data Protection Authority accused the Norwegian Institute of Public Health of failing to carry out a proper risk assessment of its contact-tracing app, Smittestopp. The World Health Organization, for example, is developing a symptom-checking app that might also enable contact tracing in under-resourced countries. The European Commission has outlined requirements for digital tracing solutions deployed in the European Union, including compliance with EU data protection and privacy rules1.

Trust among current and future patients is essential for the success of biobank research. The submission of an informed consent is an act of trust by a patient or a research subject, but a strict application of the rule of informed consent may not be sensitive to the multiplicity of patient interests at stake, and could thus be detrimental to trust. According to a recently proposed law on “genetic integrity” in Sweden, third parties will be prohibited from requesting or seeking genetic information about an individual. Cumbersome restrictions on research may be lifted, thus creating a more favourable climate for medical research.

In the autumn of 2003, UK Biobank published the first draft of its Ethics and Governance Framework. Subsequently, this document has been available for interested parties to comment on and the UK Biobank Board of Directors is expected to adopt the final version in 2004. Here, we aim to contribute to this process and highlight to a wider audience some of the inconsistencies in the issues of consent, governance and right of withdrawal that emerge from the draft of the Framework. These issues will have implications for securing the public trust and long-term support that the success of the project depends on. Therefore, they must be considered carefully because the UK Biobank will be the first ever genetic database of a general population of this size to become operational, and will be used as a model for other projects of this kind.

This article explores ethical considerations related to participatory visual and digital methods for public health research and practice, through the lens of an approach known as “digital storytelling.” We begin by briefly describing the digital storytelling process and its applications to public health research and practice. Next, we explore 6 common challenges: fuzzy boundaries, recruitment and consent to participate, power of shaping, representation and harm, confidentiality, and release of materials. We discuss their complexities and offer some considerations for ethical practice. We hope this article serves as a catalyst for expanded dialogue about the need for high standards of integrity and a situated practice of ethics wherein researchers and practitioners reflexively consider ethical decision-making as part of the ongoing work of public health.

The integration of social media into human subjects research offers significant opportunities for data collection, disease surveillance, and participant recruitment. However, it also poses a number of ethical challenges. This article evaluates the dual nature of social media as a research tool, highlighting its potential benefits while also addressing concerns about exacerbating health disparities, compromising participant privacy and confidentiality, challenging expectations around participant disclosure, and perpetuating discriminatory practices. By exploring issues related to equity and privacy, this article discusses the implications of digital recruitment and online behavioral advertising, underscoring the vital role of institutional review boards in ensuring ethical standards are upheld. Furthermore, this work proposes key strategies for researchers and regulatory authorities, emphasizing community engagement, transparency, and inclusive recruitment practices. The analysis aims to guide stakeholders in navigating the ethical complexities of digital research, fostering transparency, trust, and accountability in the realm of human subjects research.

Digital twins have emerged as a groundbreaking concept in personalized medicine, offering immense potential to transform health care delivery and improve patient outcomes. It is important to highlight the impact of digital twins on personalized medicine across the understanding of patient health, risk assessment, clinical trials and drug development, and patient monitoring. By mirroring individual health profiles, digital twins offer unparalleled insights into patient-specific conditions, enabling more accurate risk assessments and tailored interventions. However, their application extends beyond clinical benefits, prompting significant ethical debates over data privacy, consent, and potential biases in health care. The rapid evolution of this technology necessitates a careful balancing act between innovation and ethical responsibility. As the field of personalized medicine continues to evolve, digital twins hold tremendous promise in transforming health care delivery and revolutionizing patient care. While challenges exist, the continued development and integration of digital twins hold the potential to revolutionize personalized medicine, ushering in an era of tailored treatments and improved patient well-being. Digital twins can assist in recognizing trends and indicators that might signal the presence of diseases or forecast the likelihood of developing specific medical conditions, along with the progression of such diseases. Nevertheless, the use of human digital twins gives rise to ethical dilemmas related to informed consent, data ownership, and the potential for discrimination based on health profiles. There is a critical need for robust guidelines and regulations to navigate these challenges, ensuring that the pursuit of advanced health care solutions does not compromise patient rights and well-being. This viewpoint aims to ignite a comprehensive dialogue on the responsible integration of digital twins in medicine, advocating for a future where technology serves as a cornerstone for personalized, ethical, and effective patient care.

Just as indignities common in human-subjects research led to the articulation of ethical principles in the Belmont Report 40 years ago, contemporary concerns about data use call for stakeholders to promulgate ethical guidance for health data.