Search

Although medical confidentiality is widely recognized as an essential principle in the therapeutic relationship, its systematic and coherent practice has been an ethically challenging duty upon healthcare providers due to various concerns of clinical, moral, religious, social, ethical and legal natures. Medical confidentiality can be breached to protect the patient and/or others if maintaining confidentiality causes serious harm. Healthcare professionals may encounter complicated situations whereby the divulgence of a patient's confidential information may pose a threat to one party whereas the concealment of such information may cause harm to another. After deliberating on the Islamic concept of harm (ḍarar), this paper focuses on the dual duty and conflicts of interests faced by healthcare professionals in the practice of medical confidentiality. Referring to serious infectious diseases with a special mention of AIDS, this study also provides discourse on how healthcare professionals deal with difficult scenarios of conflicts of interests and ethical dilemmas., (© 2023. The Author(s), under exclusive licence to Springer Nature B.V.)

Machine learning models hold great promise with medical applications, but also give rise to a series of ethical challenges. In this survey we focus on training data, model interpretability and bias and the related issues tied to privacy, autonomy, and health equity., Competing Interests: Acknowledgments: The authors report no relevant conflicts of interest., (Copyright ©2024 by the North Carolina Institute of Medicine and The Duke Endowment. All rights reserved.)

Contact investigation is an evidence-based intervention of multidrug-resistant tuberculosis (MDR-TB) to protect public health by interrupting the chain of transmission. In pursuit of contact investigation, patients' MDR-TB status has to be disclosed to third parties (to the minimum necessary) for tracing the contacts. Nevertheless, disclosure to third parties often unintentionally leads the MDR-TB patients suffered from social discrimination and stigma. For this reason, patients are less inclined to reveal their MDR-TB status and becomes a significant issue in contact investigation. This issue certainly turns into a negative impact on the public interest. Tension between keeping MDR-TB status confidential and safeguarding public health arises in relation to this issue. Regarding MDR-TB management, patient compliance with treatment and contact investigation are equally important. Patients might fail to comply with anti-TB therapy and be reluctant to seek healthcare due to disclosure concerns. In order to have treatment adherence, MDRTB patients should not live through social discrimination and stigma arising from disclosure and TB team has a duty to support them as a mean of reciprocity. However, implementation of contact investigation as a public health policy can still be challenging even with promising reciprocal support to the patients because MDR-TB patients are living in different contexts and situations. There can be no straight forward settlement but an appropriate justification for each distinct context is needed to strike a balance between individual confidentiality and public interest., (© 2024. The Author(s) under exclusive licence to Monash University.)

This paper explores the security, privacy, and ethical implications of e-health data in Iran's healthcare network. A framework is proposed to ensure security and privacy in electronic health information processing across various institutions. The framework addresses aspects such as software/hardware, communication networks, patient safety, privacy, confidentiality, online health service regulations, commercial and judicial exploitation, and education/research. The study categorizes these requirements into seven main categories to safeguard health-oriented service recipients' security and privacy.

The field of dermatology is experiencing the rapid deployment of artificial intelligence (AI), from mobile applications (apps) for skin cancer detection to large language models like ChatGPT that can answer generalist or specialist questions about skin diagnoses. With these new applications, ethical concerns have emerged. In this scoping review, we aimed to identify the applications of AI to the field of dermatology and to understand their ethical implications. We used a multifaceted search approach, searching PubMed, MEDLINE, Cochrane Library and Google Scholar for primary literature, following the PRISMA Extension for Scoping Reviews guidance. Our advanced query included terms related to dermatology, AI and ethical considerations. Our search yielded 202 papers. After initial screening, 68 studies were included. Thirty-two were related to clinical image analysis and raised ethical concerns for misdiagnosis, data security, privacy violations and replacement of dermatologist jobs. Seventeen discussed limited skin of colour representation in datasets leading to potential misdiagnosis in the general population. Nine articles about teledermatology raised ethical concerns, including the exacerbation of health disparities, lack of standardized regulations, informed consent for AI use and privacy challenges. Seven addressed inaccuracies in the responses of large language models. Seven examined attitudes toward and trust in AI, with most patients requesting supplemental assessment by a physician to ensure reliability and accountability. Benefits of AI integration into clinical practice include increased patient access, improved clinical decision-making, efficiency and many others. However, safeguards must be put in place to ensure the ethical application of AI., Competing Interests: Conflicts of interest The authors declare no conflicts of interest., (© The Author(s) 2024. Published by Oxford University Press on behalf of British Association of Dermatologists. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Online research methods have grown in popularity due in part to the globalised and far-reaching nature of the internet but also linked to the Covid-19 pandemic whereby restrictions to travel and face to face contact necessitated a shift in methods of research recruitment and data collection. Ethical guidance exists to support researchers in conducting online research, however this is lacking within health fields. This scoping review aims to synthesise formal ethical guidance for applying online methods within health research as well as provide examples of where guidance has been used. A systematic search of literature was conducted, restricted to English language records between 2013 and 2022. Eligibility focused on whether the records were providing ethical guidance or recommendations, were situated or relevant to health disciplines, and involved the use or discussion of online research methods. Following exclusion of ineligible records and duplicate removal, three organisational ethical guidance and 24 research papers were charted and thematically analysed. Four key themes were identified within the guidance documents, 1) consent, 2) confidentiality and privacy, 3) protecting participants from harm and 4) protecting researchers from harm with the research papers describing additional context and understanding around these issues. The review identified that there are currently no specific guidelines aimed at health researchers, with the most cited guidance coming from broader methodological perspectives and disciplines or auxiliary fields. All guidance discussed each of the four key themes within the wider context of sensitive topics and vulnerable populations, areas and issues which are often prominent within health research thus highlighting the need for unifying guidance specific for health researchers. Further research should aim to understand better how online health studies apply ethical principles, to support in informing gaps across both research and guidance., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Harris et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Integrating artificial intelligence (AI) into healthcare has raised significant ethical concerns. In pharmacy practice, AI offers promising advances but also poses ethical challenges., Methods: A cross-sectional study was conducted in countries from the Middle East and North Africa (MENA) region on 501 pharmacy professionals. A 12-item online questionnaire assessed ethical concerns related to the adoption of AI in pharmacy practice. Demographic factors associated with ethical concerns were analyzed via SPSS v.27 software using appropriate statistical tests., Results: Participants expressed concerns about patient data privacy (58.9%), cybersecurity threats (58.9%), potential job displacement (62.9%), and lack of legal regulation (67.0%). Tech-savviness and basic AI understanding were correlated with higher concern scores (p < 0.001). Ethical implications include the need for informed consent, beneficence, justice, and transparency in the use of AI., Conclusion: The findings emphasize the importance of ethical guidelines, education, and patient autonomy in adopting AI. Collaboration, data privacy, and equitable access are crucial to the responsible use of AI in pharmacy practice., (© 2024. The Author(s).)

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., (©Alexandre Vallée. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 13.05.2024.)

Genetic testing has familial implications. Counsellors find themselves in (moral) conflict between medical confidentiality (towards the patient) and a potential right or even duty to warn at-risk relatives. Legal regulations vary between countries. English literature about German law is scarce. We reviewed the literature of relevant legal cases, focussing on German law, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. This article aims to familiarise counsellors with their responsibilities, compare the situation between countries and point out legally unresolved areas.According to the German Genetic Diagnostics Act (Gendiagnostikgesetz) in case of an 'avoidable or treatable' genetic disorder, geneticists ought to confine themselves to the obligated advice to the patient. Whether a breach of the duty of confidentiality can be justified in exceptional cases by 'necessity as justification' for actively informing relatives at risk remains legally unclear. In case of a 'neither avoidable nor treatable' genetic disease, geneticists should also refrain from actively informing relatives as the justifiable state of emergency does not permit to break the duty of confidentiality., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Countries that abolished donor anonymity have imposed age limits for access to certain types of information by donor offspring. In the UK and the Netherlands, a debate has started on whether these age limits should be lowered or abolished all together. This article presents some arguments against lowering the age limits as a general rule for all donor children. The focus is on whether one should give a child the right to obtain the identity of the donor at an earlier age than is presently stipulated. The first argument is that there is no evidence that a change in age will increase the total well-being of the donor offspring as a group. The second argument stresses that the rights language used for the donor-conceived child isolates the child from his or her family and this is unlikely to be in the best interest of the child. Finally, lowering the age limit reintroduces the genetic father in the family and expresses the bionormative ideology that contradicts gamete donation as a practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES., Method: Based on experiences and research into MCD facilitators' needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general., Results: The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases., Conclusions: This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools., (© 2024. The Author(s).)

The digitization of mental health enables significant shifts in clinical practice by harnessing vast amounts of data derived from the use of apps and wearables to enhance medical research, patient care, and health system efficiency. However, this process brings forth pertinent ethical and legal risks. Ethically, concerns primarily revolve around safeguarding the privacy and confidentiality of sensitive data, alongside the transformation of the doctor-patient relationship through technological interaction. Within the regulatory realm, issues encompass the classification of these tools as medical products, ensuring normative assurance of effective protection of mental health data, and addressing potential legal risks within this domain. This article aims to provide an overarching view of this landscape, serving as a catalyst for the technological, ethical, and legal discourse necessitated by digital mental health.

Confidentiality is an essential component of high-quality health care for adolescents and young adults and can have an impact on the health care experiences and health outcomes of youth. Federal and state laws, professional guidelines, and ethical standards provide a core framework for guidance in the implementation of confidentiality protections in clinical practice. This policy statement provides recommendations for pediatricians and other pediatric health care professionals, clinics, health systems, payers, and electronic health record developers to optimize confidentiality practices and protections for adolescents and young adults across the spectrum of care., (Copyright © 2024 by the American Academy of Pediatrics.)

Confidentiality is a foundational element of high-quality, accessible, and equitable health care. Despite strong grounding in federal and state laws, professional guidelines, and ethical standards, health care professionals and adolescent patients face a range of complexities and barriers to seeking and providing confidential care to adolescents across different settings and circumstances. The dynamic needs of adolescents, the oftentimes competing interests of key stakeholders, the rapidly evolving technological context of care, and variable health care billing and claims requirements are all important considerations in understanding how to optimize care to focus on and meet the needs of the adolescent patient. The following assessment of the evolving evidence base offers a view of the current state and best practices while pointing to numerous unmet needs and opportunities for improvement in the care experiences of youth as well as their health outcomes., (Copyright © 2024 by the American Academy of Pediatrics.)

Biobanking-the storage of human biological samples, including tissue, blood, urine, and genetic data-raises many ethical, legal, and social issues, including confidentiality and privacy. Pediatric biobanking is more complicated, with difficulties arising because children lack capacity to consent and acquire this capacity upon maturity when the research is still ongoing. Yet given the limited availability of pediatric samples, the translational nature of biobanking presents a unique opportunity to share samples and produce clinically necessary information about pediatric development and diseases. Guidance on navigating these legal and ethical difficulties is needed for those involved in pediatric biobanking-including researchers, participants, and families, and those involved in biobank governance. This paper seeks to map the current regulatory framework governing pediatric biobanking to determine what guidance is currently offered. Regulatory mapping of current international and national guidelines on pediatric biobanking addressing the ethical, legal, and social nuances of pediatric biobanking was undertaken. This paper finds that international guidelines around biobanking are mostly for adults, and even when pediatric-specific, documents are non-binding, inconsistent, or only limited guidance is offered on a range of important issues specific to pediatric biobanks.   Conclusion: This paper shows a need for consistent, comprehensive, and clear regulation on pediatric biobanking so that research can more quickly, efficiently, and ethically be translated to useful information and treatment in pediatric care. What is Known: • Pediatric biobanking presents new opportunities to conduct valuable translational research to benefit pediatric populations. However, the storage of pediatric biological samples raises many ethical, legal and social issues-in part because child participants may be considered to lack capacity to consent but can acquire this capacity upon maturity when the research is still ongoing. Pediatric biobanks must grapple with issues of consent, confidentiality and privacy, and long-term participation regarding child participants. What is New: • Regulatory guidance on these ethical, legal, and social issues is needed for researchers, participants, and families and those involved in biobank governance. This paper identifies nationally specific and international guidance on biobanking and summarizes the guidance provided in relation to these pediatric specific issues. It finds that most guidance is non-binding and inconsistent between guidance documents and may offer only limited guidance to stakeholders. A need for consistent, comprehensive, and clear regulation on pediatric biobanking is needed at an international level to enable research., (© 2024. The Author(s).)

Many if not most sperm donors in the early years of IVF donated under conditions of anonymity. There is, however, a growing awareness of the ethical cost of withholding identifying parental information from donor children. Today, anonymous donation is illegal in many jurisdictions, and some jurisdictions have gone as far as retrospectively invalidating contracts whereby donors were guaranteed anonymity. This article provides a critical evaluation of the ethics and legality of anonymous donation. We defend Australian and British legislation that has outlawed donor anonymity, and we argue for the establishment of a central registry that provides donor children with the ability to easily and reliably access identifying information about their donor parents., (© 2023. Journal of Bioethical Inquiry Pty Ltd.)

Telemedicine, defined as the practice of delivering healthcare services remotely using information and communications technologies, raises a plethora of ethical considerations. As telemedicine evolves, its ethical dimensions play an increasingly pivotal role in balancing the benefits of advanced technologies, ensuring responsible healthcare practices within telemedicine environments, and safeguarding patient rights. Healthcare providers, patients, policymakers, and technology developers involved in telemedicine encounter numerous ethical challenges that need to be addressed. Key ethical topics include prioritizing the protection of patient rights and privacy, which entails ensuring equitable access to remote healthcare services and maintaining the doctor-patient relationship in virtual settings. Additional areas of focus encompass data security concerns and the quality of healthcare delivery, underscoring the importance of upholding ethical standards in the digital realm. A critical examination of these ethical dimensions highlights the necessity of establishing binding ethical guidelines and legal regulations. These measures could assist stakeholders in formulating effective strategies and methodologies to navigate the complex telemedicine landscape, ensuring adherence to the highest ethical standards and promoting patient welfare. A balanced approach to telemedicine ethics should integrate the benefits of telemedicine with proactive measures to address emerging ethical challenges and should be grounded in a well-prepared and respected ethical framework.

Background: Artificial Intelligence (AI) refers to the simulation of human intelligence in machines that are programmed to perform tasks that typically require human intelligence. The integration of AI and telehealth applications in healthcare raises ethical concerns such as bias, transparency, data privacy, and accountability for errors. Several studies have assessed this topic, particularly with regard to musculoskeletal disorders, which will be the focus of this manuscript., Objective: We will examine key ethical concepts including informed consent, data protection, confidentiality, physician malpractice, liability, and telemedicine regulations., Methods: Ethical issues pertaining to the topic were explored through a review paper. The primary objective of this scoping review was to map and synthesize the existing literature concerning ethical considerations in telehealth and AI for work-related musculoskeletal disorders., Results: Research demonstrates that medication effectiveness, patient and physician satisfaction, and accessibility costs are higher with telemedicine and AI methods compared to in-person approaches, particularly for work-related musculoskeletal disorders. Therefore, addressing ethical issues, including patient data privacy and security, is crucial in this field. By considering these factors, the adoption of emerging AI and telemedicine applications, especially for work-related musculoskeletal disorders, is likely to increase., Conclusion: AI and telemedicine offer significant advantages, particularly in addressing work-related musculoskeletal disorders. However, ethical and legal issues surrounding their practice require standardized rules to ensure equitable access, quality care, sustainable costs, professional liability, patient privacy, data protection, and confidentiality. Further practical research studies are needed to address these considerations more effectively.

This article explores two questions: (1) whether portable MRI research might escape regulatory oversight altogether under existing U.S. privacy and research ethical frameworks, leaving research participants without adequate protections, and (2) whether existing regulatory frameworks, when they do apply, can guard society's broader interest in ensuring that portable MRI research pursues socially beneficial, ethically sound aims that minimize the potential for externalities affecting nonparticipating individuals and groups, who might be stigmatized or otherwise harmed even if they decline participation in the research.

Ethical considerations for the banking of oocytes for nonautologous use are discussed., (Copyright © 2021 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.)

Faced with the emergence of the Covid-19 pandemic, and to better understand and contain the disease's spread, health organisations increased the collaboration with other organisations sharing health data with data scientists and researchers. Data analysis assists such organisations in providing information that could help in decision-making processes. For this purpose, both national and regional health authorities provided health data for further processing and analysis. Shared data must comply with existing data protection and privacy regulations. Therefore, a robust de-identification procedure must be used, and a re-identification risk analysis should also be performed. De-identified data embodies state-of-the-art approaches in Data Protection by Design and Default because it requires the protection of direct and indirect identifiers (not just direct). This article highlights the importance of assessing re-identification risk before data disclosure by analysing a data set of individuals infected by Covid-19 that was made available for research purposes. We stress that it is highly important to make this data available for research purposes and that this process should be based on the state of the art methods in Data Protection by Design and by Default. Our main goal is to consider different re-identification risk analysis scenarios since the information on the intruder side is unknown. Our conclusions show that there is a risk of identity disclosure for all of the studied scenarios. For one, in particular, we proceed to an example of a re-identification attack. The outcome of such an attack reveals that it is possible to identify individuals with no much effort., Competing Interests: The authors have read the journal’s policy and have the following competing interests: PF is a paid employee of TekPrivacy. There are no patents, products in development, or marketed products associated with this research to declare. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

Objectives: Critical care medicine is a natural environment for machine learning approaches to improve outcomes for critically ill patients as admissions to ICUs generate vast amounts of data. However, technical, legal, ethical, and privacy concerns have so far limited the critical care medicine community from making these data readily available. The Society of Critical Care Medicine and the European Society of Intensive Care Medicine have identified ICU patient data sharing as one of the priorities under their Joint Data Science Collaboration. To encourage ICUs worldwide to share their patient data responsibly, we now describe the development and release of Amsterdam University Medical Centers Database (AmsterdamUMCdb), the first freely available critical care database in full compliance with privacy laws from both the United States and Europe, as an example of the feasibility of sharing complex critical care data., Setting: University hospital ICU., Subjects: Data from ICU patients admitted between 2003 and 2016., Interventions: We used a risk-based deidentification strategy to maintain data utility while preserving privacy. In addition, we implemented contractual and governance processes, and a communication strategy. Patient organizations, supporting hospitals, and experts on ethics and privacy audited these processes and the database., Measurements and Main Results: AmsterdamUMCdb contains approximately 1 billion clinical data points from 23,106 admissions of 20,109 patients. The privacy audit concluded that reidentification is not reasonably likely, and AmsterdamUMCdb can therefore be considered as anonymous information, both in the context of the U.S. Health Insurance Portability and Accountability Act and the European General Data Protection Regulation. The ethics audit concluded that responsible data sharing imposes minimal burden, whereas the potential benefit is tremendous., Conclusions: Technical, legal, ethical, and privacy challenges related to responsible data sharing can be addressed using a multidisciplinary approach. A risk-based deidentification strategy, that complies with both U.S. and European privacy regulations, should be the preferred approach to releasing ICU patient data. This supports the shared Society of Critical Care Medicine and European Society of Intensive Care Medicine vision to improve critical care outcomes through scientific inquiry of vast and combined ICU datasets., Competing Interests: Dr. Sijbrands’ institution received funding from European Institute of Innovation and Technology (EIT) Health and Amgen. Drs. Kaplan and Bailey received funding from Society of Critical Care Medicine. Dr. Cecconi received funding from Directed Systems, Edwards Lifesciences, and Cheetah Medical. Dr. Churpek’s institution received funding from an EarlySense research grant; he is supported by National Institutes of Health (NIH) R01 (GM123193), and he has a patent pending for risk stratification algorithm for hospitalized patients (money from royalties from the University of Chicago). Dr. Clermont received funding from the NIH, Department of Defense, National Science Foundation, and NOMA AI. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine and Wolters Kluwer Health, Inc.)

Spain is the European country where more assisted reproduction techniques (ART) are performed, reaching 9% of newborns. The objective of this article is to introduce the legal framework and to analyze some ethical questions, not without controversy, in relation to the anonymity of gamete donors and the concealment of origin by ART from their children. Spanish legislation establishes the relative anonymity of donors: both gamete recipients and born children have the right to obtain general information about them as long as their identity is not included, but in situations of risk to the life and health of the children allows your bankruptcy. Likewise, an unequivocal right to privacy and confidentiality of submission to the ART is established. The movement aimed at introducing in our country a legislative amendment that ends the anonymity of gamete donors is based on the right of those children to know their biological origin. Along with legal changes, the attitude of parents and professionals must gradually change towards more transparent and responsible communication, based on the experiences of adults conceived by these techniques, and those adopted. Building values such as trust and truth in the family relationships from responsibility requires placing the children, largely forgotten and the most vulnerable part, at the center of the debate., (Copyright © 2021 Asociación Española de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.)

At the beginning of the COVID-19 pandemic, high hopes were placed on digital contact tracing. Digital contact tracing apps can now be downloaded in many countries, but as further waves of COVID-19 tear through much of the northern hemisphere, these apps are playing a less important role in interrupting chains of infection than anticipated. We argue that one of the reasons for this is that most countries have opted for decentralised apps, which cannot provide a means of rapidly informing users of likely infections while avoiding too many false positive reports. Centralised apps, in contrast, have the potential to do this. But policy making was influenced by public debates about the right app configuration, which have tended to focus heavily on privacy, and are driven by the assumption that decentralised apps are "privacy preserving by design". We show that both types of apps are in fact vulnerable to privacy breaches, and, drawing on principles from safety engineering and risk analysis, compare the risks of centralised and decentralised systems along two dimensions, namely the probability of possible breaches and their severity. We conclude that a centralised app may in fact minimise overall ethical risk, and contend that we must reassess our approach to digital contact tracing, and should, more generally, be cautious about a myopic focus on privacy when conducting ethical assessments of data technologies.

Teledermatology is now fully incorporated into our clinical practice. However, after reviewing current legislation on the ethical aspects of teledermatology (data confidentiality, quality of care, patient autonomy, and privacy) as well as insurance and professional responsibility, we observed that a specific regulatory framework is still lacking and related legal aspects are still at a preliminary stage of development. Safeguarding confidentiality and patient autonomy and ensuring secure storage and transfer of data are essential aspects of telemedicine. One of the main topics of debate has been the responsibilities of the physicians involved in the process, with the concept of designating a single responsible clinician emerging as a determining factor in the allocation of responsibility in this setting. A specific legal and regulatory framework must be put in place to ensure the safe practice of teledermatology for medical professionals and their patients., (Copyright © 2020 AEDV. Publicado por Elsevier España, S.L.U. All rights reserved.)

Privacy and confidentiality of personal medical information are cornerstones of ethical clinical care and ethical research. But real-world research has challenged traditional ways of thinking about privacy and confidentiality of information. In today's world of "big data" and learning health care systems, researchers and others are combining multiple sources of information to address complex problems. We present a case study that highlights the ethical concerns that arise when a patient who is employed by an academic medical center learns through a research invitational letter that her private information was accessed at this center without her consent. We discuss the ethical challenges of balancing patient privacy with advancing clinical research and ask, what level of privacy and confidentiality can and should patients expect from their clinician providers, fellow research colleagues, and institutions?, (© 2021 by The Hastings Center. All rights reserved.)

In September 2015, "the Act on the Protection of Personal Information" was amended. Accordingly, "the Ethical Guidelines for Medical Research Involving Human Subjects" were also amended. "The Act on Anonymized Medical Data That Are Meant to Contribute to Research and Development in the Medical Field," which came into effect in May 2018, aims to collect and utilize medical information of each patient from medical institutions for the purpose of research and development in the medical field. Thus, the rules of personal information that need to be followed are changing considerably in the balance between importance of protection and utilization for medical development. Therefore, health care professionals and researchers are required to fully understand the current situation and the future.

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., (© 2020 The Author(s) Published by S. Karger AG, Basel.)

In retrolective research, the information necessary to answer the research question is directly generated from medical records and other clinical-documentary sources. This article analyzes the waiver of informed consent and privacy notice when research is retrolective, from which two lines of argument emerge: one is the physician's duty to protect patient dignity, integrity, right to self-determination and privacy, as well as the confidentiality of the information obtained from him; the other is retrolective research contribution to the control of diseases and society's health improvement. Waiver of informed consent or privacy notice documented in the medical record is important for retrolective research, but it has ethical implications for researchers who do not comply with the rationality and personal responsibility they have before society., (Copyright: © 2020 Permanyer.)

Background: Privacy-related concerns can prevent equitable participation in health research by US Indigenous communities. However, studies focused on these communities' views regarding health data privacy, including systematic reviews, are lacking., Methods: We conducted a systematic literature review analyzing empirical, US-based studies involving American Indian/Alaska Native (AI/AN) and Native Hawaiian or other Pacific Islander (NHPI) perspectives on health data privacy, which we define as the practice of maintaining the security and confidentiality of an individual's personal health records and/or biological samples (including data derived from biological specimens, such as personal genetic information), as well as the secure and approved use of those data., Results: Twenty-one studies involving 3234 AI/AN and NHPI participants were eligible for review. The results of this review suggest that concerns about the privacy of health data are both prevalent and complex in AI/AN and NHPI communities. Many respondents raised concerns about the potential for misuse of their health data, including discrimination or stigma, confidentiality breaches, and undesirable or unknown uses of biological specimens., Conclusions: Participants cited a variety of individual and community-level concerns about the privacy of their health data, and indicated that these deter their willingness to participate in health research. Future investigations should explore in more depth which health data privacy concerns are most salient to specific AI/AN and NHPI communities, and identify the practices that will make the collection and use of health data more trustworthy and transparent for participants., (© The Author(s) 2020. Published by Oxford University Press on behalf of the American Medical Informatics Association.)

Research Question: What ethical implications, issues and concerns play a role in conducting follow-up studies of children born after assisted reproductive technologies (ART)?, Design: Literature study and relevant experiences of academic medical centres in Brussels, Belgium, and Maastricht, the Netherlands were used to identify and analyse the most pertinent ethical implications, issues and concerns., Results: According to recommendations from the European Society of Human Reproduction and Embryology, follow-up (ideally long term) of children conceived through medically assisted reproduction (MAR) should be an integral part of introducing new ART. With potentially risky new ART on the horizon, these recommendations need to be taken more seriously. Apart from practical barriers, such as funding, challenges for follow-up include securing active involvement of families of children conceived through MAR, starting with parents of young children, and ideally involving consenting adolescents and adults during a large part of their lives, possibly even into the next generation., Conclusions: From an ethical viewpoint, the most pertinent issues include the proportionality of the inevitable burdens and risks for families of children conceived through MAR, and the implications of the principle of respect for autonomy. The proportionality requirement is most critical when it concerns incompetent children, who should not be included in research with more than minimal burdens and risks if there is no reasonable expectation of benefit for themselves. With respect for autonomy, we argue that, when seeking voluntary consent for participating in follow-up studies that meet the condition of proportionality, professionals may encourage members of families of children conceived through MAR to partake in follow-up research., (Copyright © 2020 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Confidentiality is based on principles of deontology and ethics, which are included in French regulations and supported by the professional orders. It contributes to the respect and dignity of the patient. If this consideration of the human person is old, it has been updated to build the framework imposed by the accreditation of medical biology laboratories. Confidentiality is thus reflected in a charter of ethics, a model of which we propose here. It reflects the commitments of healthcare professionals in the processing of biological samples from patients. Confidentiality is thus applied, in a practical way, at each phase of the laboratory's activity. In the pre-analytical phase, it organizes the reception of the patient and the taking of samples, taking into account the particular case of minors. In the analytical phase, confidentiality imposes limited access to the technical premises and the organization of the flow of personnel from outside the laboratory. Finally, in the post-analytical phase, the reporting of results is regulated, depending on the type of analyses performed and the person to whom the results are to be reported (patient or prescriber). The particular case of spermiology illustrates all these points. Finally, during these phases of sample processing, document management is also a matter of confidentiality and data protection. Confidentiality is essential to the functioning of a health care structure, but it is restrictive in its day-to-day implementation. Nevertheless, it must be combined with an awareness of all staff to address the ethical issue of human dignity.

Purpose: The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to contribute to meeting minor children's need for information about their parents' illness and prognosis. Previous research has shown that many parents withhold information about illness and anticipated death from their children. This study explored main considerations for palliative health-care professionals in these situations, and how they negotiate conflicting considerations of confidentiality and child involvement., Method: This qualitative exploratory study involved semi-structured interviews with 11 palliative health-care professionals. Hermeneutics informed the data analysis., Results: The health professionals' main considerations were sustaining patients' hope and building trust in the professional-patient relationship. Both concerns were grounded in respect for patient autonomy. The health professionals negotiated patient autonomy and child involvement in different ways, defined in the present analysis on a continuum ranging from granting full patient autonomy to going directly against patients' will., Conclusions: The professional-patient relationship is the primary consideration in the health care context, and decision making on the degree of children's involvement happens in a dialogical process between health professionals and patients. Close professional-patient relationships might increase the emotional impacts on health professionals, who consequently might give greater relative weight to patients' will. We propose that procedures for initiating collaboration with professionals in the child's everyday life context help health professionals involving the child without threatening trust., (Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.)

In recent years, phylogenetic analysis of HIV sequence data has been used in research studies to investigate transmission patterns between individuals and groups, including analysis of data from HIV prevention clinical trials, in molecular epidemiology, and in public health surveillance programs. Phylogenetic analysis can provide valuable information to inform HIV prevention efforts, but it also has risks, including stigma and marginalization of groups, or potential identification of HIV transmission between individuals. In response to these concerns, an interdisciplinary working group was assembled to address ethical challenges in US-based HIV phylogenetic research. The working group developed recommendations regarding (1) study design; (2) data security, access, and sharing; (3) legal issues; (4) community engagement; and (5) communication and dissemination. The working group also identified areas for future research and scholarship to promote ethical conduct of HIV phylogenetic research., (Published by Oxford University Press for the Infectious Diseases Society of America 2020.)

This article describes the process of designing, approving, and conducting an investigator-initiated protocol to use an eye-tracking device in a health care setting. Participants wore the device, which resembles eyeglasses, in a front-facing manner in an intensive care unit for the study of personnel gaze patterns, producing a visual record of workflow. While the data of interest for our study was not specifically the health information protected by the privacy rule of the Health Insurance Portability and Accountability Act (HIPAA), a wide variety of such data was captured by the eye-tracking device, and the prospective consent of all people who might have been incidentally videotaped was not feasible. The protocol therefore required attention to unique ethical considerations-including consent, privacy and confidentiality, HIPAA compliance, institutional liability, and the use of secondary data. The richness of eye-tracker data suggests various beneficial applications in health care occupational research and quality improvement. Therefore, sharing our study's successful design and execution, including proactive researcher-institutional review board communication, can inform and encourage similarly valuable, ethical, and innovative audiovisual research techniques., (© 2020 by The Hastings Center. All rights reserved.)

This paper argues that assessing personal responsibility in healthcare settings for the allocation of medical resources would be too privacy-invasive to be morally justifiable. In addition to being an inappropriate and moralizing intrusion into the private lives of patients, it would put patients' sensitive data at risk, making data subjects vulnerable to a variety of privacy-related harms. Even though we allow privacy-invasive investigations to take place in legal trials, the justice and healthcare systems are not analogous. The duty of doctors and healthcare professionals is to help patients as best they can-not to judge them. Patients should not be forced into giving up any more personal information than what is strictly necessary to receive an adequate treatment, and their medical data should only be used for appropriate purposes. Medical ethics codes should reflect these data rights. When a doctor asks personal questions that are irrelevant to diagnose or treat a patient, the appropriate response from the patient is: 'none of your business'., (© 2020 The Authors. Bioethics published by John Wiley & Sons Ltd.)

Artificial intelligence (AI) is among the fastest developing areas of advanced technology in medicine. The most important qualia of AI which makes it different from other advanced technology products is its ability to improve its original program and decision-making algorithms via deep learning abilities. This difference is the reason that AI technology stands out from the ethical issues of other advanced technology artifacts. The ethical issues of AI technology vary from privacy and confidentiality of personal data to ethical status and value of AI entities in a wide spectrum, depending on their capability of deep learning and scope of the domains in which they operate. Developing ethical norms and guidelines for planning, development, production, and usage of AI technology has become an important issue to overcome these problems. In this respect three outstanding documents have been produced:1. The Montréal Declaration for Responsible Development of Artificial Intelligence2. Ethics Guidelines for Trustworthy AI3. Asilomar Artificial Intelligence PrinciplesIn this study, these three documents will be analyzed with respect to the ethical principles and values they involve, their perspectives for approaching ethical issues, and their prospects for ethical reasoning when one or more of these values and principles are in conflict. Then, the sufficiency of these guidelines for addressing current or prospective ethical issues emerging from the existence of AI technology in medicine will be evaluated. The discussion will be pursued in terms of the ambiguity of interlocutors and efficiency for working out ethical dilemmas occurring in practical life.

Background: While there are numerous mental health apps on the market today, less is known about their safety and quality. This study aims to offer a longitudinal perspective on the nature of high visibility apps for common mental health and physical health conditions., Methods: In July 2019, we selected the 10 top search-returned apps in the Apple App Store and Android Google Play Store using six keyword terms: depression, anxiety, schizophrenia, addiction, high blood pressure and diabetes. Each app was downloaded by two authors and reviewed by a clinician, and the app was coded for features, functionality, claims, app store properties, and other properties., Results: Compared with 1 year prior, there were few statistically significant changes in app privacy policies, evidence and features. However, there was a high rate of turnover with only 34 (57%) of the apps from the Apple's App Store and 28 (47%) from the Google Play Store remaining in the 2019 top 10 search compared with the 2018 search., Discussion: Although there was a high turnover of top search-returned apps between 2018 and 2019, we found that there were few significant changes in features, privacy, medical claims and other properties. This suggests that, although the highly visible and available apps are changing, there were no significant improvements in app quality or safety., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Contemporary bioethics was fledged and is sustained by challenges posed by new technologies. These technologies have affected many lives. Yet health informatics affects more lives than any of them. The challenges include the development and the appropriate uses and users of machine learning software, the balancing of privacy rights against the needs of public health and clinical practice in a time of Big Data analytics, whether and how to use this technology, and the role of ethics and standards in health policy. Historical antecedents in statistics and evidence-based practice foreshadow some of the difficulties now faced, but the scope and scale of these challenges requires that ethics, too, be brought to scale in parallel, especially given the size of contemporary data sets and the processing power of new computers. Fortunately, applied ethics affords a variety of tools to help identify and rank applicable values, support best practices, and contribute to standards. The bioethics community can in partnership with the informatics community arrive at policies that promote the health sciences while reaffirming the many and varied rights that patients expect will be honored., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart.)