Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation.

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.

When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

E-Health: Security, Privacy, and Ethics Requirements from a National Perspective in I. R. Iran.

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.

Envisioning the Future of Personalized Medicine: Role and Realities of Digital Twins.

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.

Ethical considerations and concerns in the implementation of AI in pharmacy practice: a cross-sectional study.

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.

Ethical guidance for conducting health research with online communities: A scoping review of existing guidance.

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.

Confidentiality in the Care of Adolescents: Technical Report.

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.

Confidentiality in the Care of Adolescents: Policy Statement.

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.

Determining the state of guidance on pediatric biobanking for researchers, HRECS, and families: Regulatory mapping of international guidance.

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.

Ethical considerations for artificial intelligence in dermatology: a scoping review.

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.

The use of artificial intelligence (AI) in dermatology is rapidly increasing, with applications in dermatopathology, medical dermatology, cutaneous surgery, microscopy/spectroscopy and the identification of prognostic biomarkers (characteristics that provide information on likely patient health outcomes). However, with the rise of AI in dermatology, ethical concerns have emerged. We reviewed the existing literature to identify applications of AI in the field of dermatology and understand the ethical implications. Our search initially identified 202 papers, and after we went through them (screening), 68 were included in our review. We found that ethical concerns are related to the use of AI in the areas of clinical image analysis, teledermatology, natural language processing models, privacy, skin of colour representation, and patient and provider attitudes toward AI. We identified nine ethical principles to facilitate the safe use of AI in dermatology. These ethical principles include fairness, inclusivity, transparency, accountability, security, privacy, reliability, informed consent and conflict of interest. Although there are many benefits of integrating AI into clinical practice, our findings highlight how safeguards must be put in place to reduce rising ethical concerns.

Dataísmo (de la salud), tecnología y privacidad / (Health) dataism, technology and privacy

El dataísmo puede privar al individuo de su privacidad. Las personas reflexionan sobre el coste de oportunidad que supone ceder sus datos y otorgan mayor importancia a la efectividad en la lucha contra enfermedades y pandemias frente a su uso ilícito, ilegal o poco ético. El big data es un bien común de la humanidad, y compartir datos puede salvar vidas, pero aprovechémoslo aplicando correctamente la ética de los datos, donde los gobiernos y organizaciones estén implicados y se respete el derecho fundamental de protección de datos. (AU)

Dataism can deprive the individuals of their privacy. People are reflecting on the opportunity cost of giving away their data and are placing greater importance on the effectiveness of fighting diseases and pandemics than on its illicit, illegal or unethical use. Big data is a common good of humanity, and sharing data can save lives, but let’s harness it with the right application of data ethics, where governments and organisations are involved and the fundamental right to data protection is respected. (AU)

Gobernanza de datos en salud: ética, privacidad y seguridad: parte 2

La gobernanza de datos es un requisito en el actual entorno de los sistemas de salud, en el cual las demandas ciudadanas en cuanto al acceso a los servicios de salud son temas prioritarios en las agendas de salud de los países latinoamericanos. Ahora que las organizaciones relacionadas a la salud, tienen la oportunidad de captar cantidades inmensas de datos internos y externos, estructurados y no estructurados, necesitan una disciplina que les permita maximizar su valor, gestionar riesgos y reducir costes. En este webinar, discutimos uno de los dominios claves dentro de la gobernanza de datos en salud como es la privacidad, seguridad y uso ético de los mismos, como uno de los temas más sensibles de actualidad y que han puesto en jaque a muchos de los sistemas de salud durante la pandemia de COVID-19.

Gobernanza de datos en salud: ética, privacidad y seguridad: parte 1

La gobernanza de datos es un requisito en el actual entorno de los sistemas de salud, en el cual las demandas ciudadanas en cuanto al acceso a los servicios de salud son temas prioritarios en las agendas de salud de los países latinoamericanos. Ahora que las organizaciones relacionadas a la salud, tienen la oportunidad de captar cantidades inmensas de datos internos y externos, estructurados y no estructurados, necesitan una disciplina que les permita maximizar su valor, gestionar riesgos y reducir costes. En este webinar, discutimos uno de los dominios claves dentro de la gobernanza de datos en salud como es la privacidad, seguridad y uso ético de los mismos, como uno de los temas más sensibles de actualidad y que han puesto en jaque a muchos de los sistemas de salud durante la pandemia de COVID-19.

Experiência de estudantes na divulgação da imagem de pacientes odontológicos / Student experience in the images' dissemination of dental patients

As implicações éticas do uso de redes sociais por profissionais da saúde têm ocupado espaço na agenda da Bioética quando se considera os direitos do paciente e o risco de exposição de sua imagem. Este estudo buscou conhecer a percepção de estudantesde Odontologia sobre a exposição da imagem de pacientes em redes sociais. Trata-se de estudo observacional transversal, quantitativo, com aplicação de questionário a estudantes de um curso de Odontologia. Os dados foram tabulados e analisados por meio de estatísticas descritivas. A taxa de resposta foi de 73,5% (n=247), todos utilizando redes sociais e 33,1% (n=82) declararam já ter realizado fotografia de paciente na clínica de ensino. Muitos estudantes ainda não têm clareza sobre as questões éticas que envolvem a divulgação de imagem de pacientes em rede social. Isso revela a importância de se ater a esse tópico nos cursos brasileiros de graduação em Odontologia (AU).

The ethical implications of social networks use by health professionals have occupied space on the Bioethics' agenda, when considering the rights of patients and the risk of exposing their image. This study aimed to understand the perception of dentistry students about the exposure of patients image in social networks. This is a cross-sectional, quantitative, observational study, with the application of a questionnaire to students of a Dentistry course. It was used the descriptive statistics for tabulating and analyzing the data. The response rate was 73.5% (n=247), all using social networks, and 33.1% (n=82) reported having already taken a patient photograph at the training clinic. Many students are still unclear about the ethical issues surrounding the dissemination of patient images on social media. The ethical implications of social networks use by health professionals haveoccupied space on the Bioethics' agenda, when considering the rights of patients and the risk of exposing their image (AU).

Webinar ética, seguridad y privacidad en tiempos de COVID-19

Conversatorio virtual organizado por la Red Centroamericana de Informática en Salud en colaboración con Central American Healthcare Initiative, el 7 de mayo de 2020.

Ethical issues in oocyte banking for nonautologous use: an Ethics Committee opinion.

Ethical considerations for the banking of oocytes for nonautologous use are discussed.