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.

COMMENTARY: Protecting healthcare privacy: Analysis of data protection developments in India.

Patient privacy is essential and so is ensuring confidentiality in the doctor-patient relationship. However, today's reality is that patient information is increasingly accessible to third parties outside this relationship. This article discusses India's data protection framework and assesses data protection developments in India including the Digital Personal Data Protection Act, 2023.

A review on legal issues of medical robots.

This paper examines the legal challenges associated with medical robots, including their legal status, liability in cases of malpractice, and concerns over patient data privacy and security. And this paper scrutinizes China's nuanced response to these dilemmas. An analysis of Chinese judicial practices and legislative actions reveals that current denial of legal personality to AI at this stage is commendable. To effectively control the financial risks associated with medical robots, there is an urgent need for clear guidelines on responsibility allocation for medical accidents involving medical robots, the implementation of strict data protection laws, and the strengthening of industry standards and regulations.

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.

Protecting Privacy of Pregnant and LGBTQ+ Research Participants.

This Viewpoint summarizes existing federal regulations aimed at protecting research data, describes the challenges of enforcing these regulations, and discusses how evolving privacy technologies could be used to reduce health disparities and advance health equity among pregnant and LGBTQ+ research participants.

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.

ChatGPT in private practice: The opportunities and pitfalls of novel technology.

OBJECTIVE: This article explores the transformative impact of OpenAI and ChatGPT on Australian medical practitioners, particularly psychiatrists in the private practice setting. It delves into the extensive benefits and limitations associated with integrating ChatGPT into medical practice, summarising current policies and scrutinising medicolegal implications. CONCLUSION: A careful assessment is imperative to determine whether the benefits of AI integration outweigh the associated risks. Practitioners are urged to review AI-generated content to ensure its accuracy, recognising that liability likely resides with them rather than with AI platforms, despite the lack of case law specific to negligence and AI in the Australian context at present. It is important to employ measures that ensure patient confidentiality is not breached and practitioners are encouraged to seek counsel from their professional indemnity insurer. There is considerable potential for future development of specialised AI software tailored specifically for the medical profession, making the use of AI more suitable for the medical field in the Australian legal landscape. Moving forward, it is essential to embrace technology and actively address its challenges rather than dismissing AI integration into medical practice. It is becoming increasingly essential that both the psychiatric community, medical community at large and policy makers develop comprehensive guidelines to fill existing policy gaps and adapt to the evolving landscape of AI technologies in healthcare.

Health Care AI and Patient Privacy-Dinerstein v Google.

This Viewpoint summarizes a recent lawsuit alleging that a hospital violated patients' privacy by sharing electronic health record (EHR) data with Google for development of medical artificial intelligence (AI) and discusses how the federal court's decision in the case provides key insights for hospitals planning to share EHR data with for-profit companies developing medical AI.

El listado de pacientes en la empresa dedicada a la prestación de servicios médicos como objeto material de los delitos de descubrimiento y revelación de secretos de empresa / [The list of patients in the company dedicated to the provision of medical services as a material object of the crimes of discovery and disclosure of company secrets]

En la actualidad podría afirmarse que la mayor problemática existente en torno a los delitos de descubrimiento y revelación de secretos de empresa se encuentra en la indeterminación de su objeto material: el secreto de empresa. Esta indeterminación, que la reciente Ley 1/2019, de 20 de febrero, de Secretos Empresariales ayuda a solventar, ha llevado a los Tribunales de la jurisdicción penal a pronunciamientos dispares sobre la aplicación de los tipos penales relativos al descubrimiento y revelación de secretos de empresa, siendo uno de los supuestos más cuestionados en la práctica de nuestros Tribunales el tratamiento (o no) de un listado de clientes como un secreto de empresa. Si bien, hay muchas resoluciones que abogan por entender que dichos listados de clientes no forman parte de la información confidencial y reservada de una empresa –lo que impediría entenderla como un secreto de empresa–, encontramos también ejemplos de casos en los que se ha adoptado una solución contraria. Por medio del presente análisis, se pretende responder a la siguiente pregunta: ¿Puede un listado de pacientes ser considerado un secreto de empresa y, por tanto, dar lugar su descubrimiento y/o revelación a la comisión de un delito de los recogidos en el artículo 278 y siguientes del Código Penal? ¿Y si dicho listado de pacientes contuviera documentación clínica (con datos médicos) de cada uno de ellos? (AU)

Nowadays, the main problem with the offences of discovery and disclosure of trade secrets may lie in the indeterminacy of its material object: the business or trade secret. This indeterminacy, which the recent Law 1/2019, of 20 February, on Business Secrets helps to resolve, has led the Courts of the criminal jurisdiction to make disparate pronouncements on the application of criminal offences relating to the discovery and disclosure of business secrets, with one of the most questioned cases in the practice of our Courts being the treatment (or not) of a list of clients as a business secret. While there are many rulings that argue that such customer lists do not form part of the confidential and reserved information of a company –which would prevent it from being considered a trade secret–, there are also examples of cases in which the opposite solution has been adopted. This analysis aims to answer the following question: Can a list of patients be considered a business secret and, therefore, can its discovery and/or disclosure give rise to the commission of an offence under Article 278 et seq. of the Criminal Code? What if the list of patients contained clinical documentation (with medical data) for each of them? (AU)

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)

Dobbs and the future of health data privacy for patients and healthcare organizations.

The Supreme Court recently overturned settled case law that affirmed a pregnant individual's Constitutional right to an abortion. While many states will commit to protect this right, a large number of others have enacted laws that limit or outright ban abortion within their borders. Additional efforts are underway to prevent pregnant individuals from seeking care outside their home state. These changes have significant implications for delivery of healthcare as well as for patient-provider confidentiality. In particular, these laws will influence how information is documented in and accessed via electronic health records and how personal health applications are utilized in the consumer domain. We discuss how these changes may lead to confusion and conflict regarding use of health information, both within and across state lines, why current health information security practices may need to be reconsidered, and what policy options may be possible to protect individuals' health information.

[When quality improvement clashes with privacy regulations]. / Wanneer kwaliteitsverbetering botst met privacyregels.

Continuity in patient care is crucial but is not a 'given' in complex circumstances when several health care professionals are involved in a clinical trajectory. Discontinuity may make it difficult to follow a patient's clinical course, which can be instructive and providing useful feedback on professional performance. Hence, it is a good clinical habit to check on patients after the care has been taken over by others. However, too strict interpretation of privacy laws and regulation may hamper this valuable practice. Obviously, protection of medical information and patients' privacy is vital, however, this should not apply to health care professionals that were involved in earlier phases of a patient's care as they should be considered having a continuing care relationship with the patient. Interestingly, a vast majority of patients themselves have no concern at all when professionals that were involved in earlier phases of their care access their information.

Legal and ethical considerations of artificial intelligence in skin cancer diagnosis.

Artificial intelligence (AI) technology is becoming increasingly accurate and prevalent for the diagnosis of skin cancers. Commercially available AI diagnostic software is entering markets across the world posing new legal and ethical challenges for both clinicians and software companies. Australia has the highest rates of skin cancer in the world and is poised to be a significant benefactor and pioneer of the technology. This review describes the legal and ethical considerations raised by the emergence of artificial intelligence in skin cancer diagnosis and proposes recommendations for best practice.

The European Genome-phenome Archive in 2021.

The European Genome-phenome Archive (EGA - https://ega-archive.org/) is a resource for long term secure archiving of all types of potentially identifiable genetic, phenotypic, and clinical data resulting from biomedical research projects. Its mission is to foster hosted data reuse, enable reproducibility, and accelerate biomedical and translational research in line with the FAIR principles. Launched in 2008, the EGA has grown quickly, currently archiving over 4,500 studies from nearly one thousand institutions. The EGA operates a distributed data access model in which requests are made to the data controller, not to the EGA, therefore, the submitter keeps control on who has access to the data and under which conditions. Given the size and value of data hosted, the EGA is constantly improving its value chain, that is, how the EGA can contribute to enhancing the value of human health data by facilitating its submission, discovery, access, and distribution, as well as leading the design and implementation of standards and methods necessary to deliver the value chain. The EGA has become a key GA4GH Driver Project, leading multiple development efforts and implementing new standards and tools, and has been appointed as an ELIXIR Core Data Resource.

Panorama regional de estándares de informática en salud

Presentación hecha por Alejandro Benavides, Sub-coordinador de la Red Centroamericana de Informática en Salud, durante el Webinar "Panorama Regional de Estándares de Informática en Salud" realizado el día 4 de diciembre de 2019.

Ações para a adequação da RNDS à lei geral de proteção de dados

A implementação da Rede Nacional de Dados em Saúde (RNDS) iniciou-se em junho de 2019 com os objetivos de oferecer benefícios de melhoria da assistência à saúde, a partir do acesso às informações e continuidade do cuidado nos níveis de atenção, de permitir eficiência na gestão dos recursos públicos e de impulsionar a Inovação na Saúde. Em março de 2020, a abrangência e o escopo do projeto da RNDS foram direcionados ao enfrentamento da COVID-19, para o fortalecimento da resposta do sistema de saúde, monitoramento e gestão da saúde populacional, oferta de soluções para engajamento ativo do usuário no controle da epidemia e processamento do esperado número de casos da doença. Desde as primeiras ações de planejamento, governança, definição de arquitetura e de regras negociais, o DATASUS se prepara para manter a RNDS em conformidade com a Lei Geral de Proteção de Dados (LGPD), com previsão de entrada em vigor para 3 de maio de 2021, conforme Medida Provisória n° 959, de 29 de abril de 2020.

Arteriosclerosis y otras enfermedades en líderes políticos y sus consecuencias para la población / Arteriosclerosis and other diseases in heads of government and its consequences for the population

La arteriosclerosis cerebrovascular y otras enfermedades de algunos líderes políticos en momentos históricos clave han facultado la toma de decisiones que han marcado el destino de sus países. Muchas enfermedades graves de líderes políticos, antes y durante su permanencia en el poder, se han ocultado a la población, y a ello han colaborado sus médicos personales presionados por su paciente. La confidencialidad de la relación médico-enfermo en circunstancias políticas especiales debe ser motivo de reflexión y debate. Sería deseable promulgar disposiciones que impidiesen la ocultación y garantizasen la total transparencia de los informes médicos sobre el estado de salud de los dirigentes mientras permanecen en el poder. La franqueza ayuda a conservar la confianza de la población.(AU)

Heads of government with cerebrovascular arteriosclerosis and other diseases in key historical moments have led to decisions that have marked the destiny of countries not always in a beneficial direction. Severe diseases in political leaders in power have often been hidden from citizens with the collaboration of personal physicians. The confidentiality of the patient-doctor relationship in special political circumstances should be reexamined and subjected to debate. Legal provisions to ensure total transparency of medical information about the health of heads of government should be implemented. Transparency ensures the trust of citizens.(AU)