Exploring the Perspectives of Older Adults Living With HIV on Virtual Care: Qualitative Study.

Background: As the population of individuals with HIV ages rapidly due to advancements in antiretroviral therapy, virtual care has become an increasingly vital component in managing their complex health needs. However, little is known about perceptions of virtual care among older adults living with HIV.

Objective: This study aimed to understand the perceptions of older adults living with HIV regarding virtual care.

Student Critical Self-Reflection and Perceptions of Video-Based Pro-Section Computer-Assisted Instruction.

Introduction: The cost, high resource demands, and psychological significance of in-person cadaveric labs are barriers to their use. Computer-assisted instruction (CAI) of gross anatomy is widely available as an alternative option. However, student engagement, reflections, and expectations of learning anatomy with CAI instead of in-person labs may influence their learning experience and outcomes.

The European Health Data Space as a Case Study.

In May 2022, the European Commission proposed the launch of a health-specific data sharing framework called the European Health Data Space (EHDS), underpinned by legislation, for the use of electronic health data by patients and for research, innovation, policy-making, patient safety, statistics, or regulatory purposes. In this essay, I review some of its more contentious features based on the latest version of the legislative proposal. I suggest that the EHDS is a useful case study to illustrate the need for a translational bioethics approach that shines a critical analytical light on contentious aspects of large-scale research infrastructures.

Assistive Technology to Support Dementia Management: Protocol for a Scoping Review of Reviews.

Background: In Canada, more than 60% of persons living with dementia reside in their own homes, and over 25% rely heavily on their care partners (ie, family members or friends) for assistance with daily activities such as personal hygiene, eating, and walking. Assistive technology (AT) is a key dementia management strategy, helping to maintain health and social support in home and community settings. AT comprises assistive products and services required for safe and effective use.

The Key Features of a Genetic Nondiscrimination Policy: A Delphi Consensus Statement.

Importance: Governments worldwide have become increasingly cognizant of the spread of genetic discrimination (negative treatment or harm on the basis of actual or presumed genetic characteristics). Despite efforts by a number of governments to establish regulations addressing this phenomenon, public concern about genetic discrimination persists.

Objective: To identify key elements of an optimal genetic nondiscrimination policy and inform policymakers as they seek to allay genetic nondiscrimination and related public anxieties.

International scope of biomedical research ethics review.

Many countries consider long-term implications for society.

Psychiatric Illness and Clinical Negligence: When Can "Secondary Victims" Successfully Claim for Damages? Recent Developments from the United Kingdom.

On January 11, 2024, the United Kingdom (U.K.) Supreme Court rendered its judgment in Paul v Royal Wolverhampton NHS Trust, restricting the circumstances in which "secondary victims" can successfully claim for damages in clinical negligence cases.

A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access.

Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews.

Purpose definition as a crucial step for determining the legal basis under the GDPR: implications for scientific research.

The General Data Protection Regulation (GDPR) of the European Union, which became applicable in 2018, contains a new accountability principle. Under this principle, controllers (ie parties determining the purposes and the means of the processing of personal data) are responsible for ensuring and demonstrating the overall compliance with the GDPR. However, interpretive uncertainties of the GDPR mean that controllers must exercise considerable judgement in designing and implementing an appropriate compliance strategy, making GDPR compliance both complex and resource-intensive.

Gross and Applied Anatomy Pedagogical Approaches in Occupational Therapy Education: A Scoping Review.

With technological advancements, anatomy teaching approaches in occupational therapy education have expanded. However, uncertainty remains regarding the approaches that best optimize academic and practice outcomes in student occupational therapists (OTs). This scoping review mapped the pedagogical approaches used to teach musculoskeletal anatomy to student OTs.

Confidentiality, public interest, and the human right to science: when can confidential information be used for the benefit of the wider community?

This article explores whether the human right to science can support the public interest as a legal basis to use and disclose confidential information. The contextual focus is scientific research; the jurisdictional focus is England. The human right to science, as reflected in the Universal Declaration of Human Rights (Article 27) and the International Covenant on Economic, Social and Cultural Rights (Article 15), hitherto has not been invoked in support of a public interest basis for lawful disclosure, but the argument is made herein that there may be scope to develop this jurisprudentially.

Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members.

Data access committees (DACs) are critical players in the data sharing ecosystem. DACs review requests for access to data held in one or more repositories and where specific constraints determine how the data may be used and by whom. Our team surveyed DAC members affiliated with genomic data repositories worldwide to understand standard processes and procedures, operational metrics, bottlenecks, and efficiencies, as well as their perspectives on possible improvements to quality review.

Hepatic Amyloidosis With Multiorgan Involvement.

Amyloidosis is a diverse entity that poses both diagnostic and treatment challenges. Whether systemic or local, amyloidosis has varied manifestations including occasional hepatic involvement. Hepatic amyloidosis, although rare, should be on the differential for those with unexplained hepatomegaly, cholestasis, alkaline phosphatase elevations, other associated organomegaly, and those with certain epidemiologic risks.

"Data makes the story come to life:" understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom-a qualitative study.

The aim of UK-REACH ("The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers") is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and information governance associated with the linkage of HCWs' registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews.

Gross and applied anatomy pedagogical approaches in occupational therapy education: protocol for a scoping review.

Introduction: Historically, dissection is considered the 'gold standard' for teaching foundational anatomy to student occupational therapists. However, many programmes no longer have access to gross anatomy laboratory resources, as it is considered too costly. To address this limitation, applied anatomy instructors have developed innovative novel approaches to teach gross and applied anatomy to student occupational therapists, including live/surface anatomy, medical imaging, and more recently, computer-aided instruction.

Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management.

Studies on the ethics of automating clinical or research decision making using artificial intelligence and other algorithmic tools abound. Less attention has been paid, however, to the scope for, and ethics of, automating decision making within regulatory apparatuses governing the access, use, and exchange of data involving humans for research. In this article, we map how the binary logic flows and real-time capabilities of automated decision support (ADS) systems may be leveraged to accelerate one rate-limiting step in scientific discovery: data access management.

Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation.

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers.  Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes.

Sudden death caused by ruptured brain arteriovenous malformation in an adolescent with autism spectrum disorder.

Brain arteriovenous malformations (bAVMs) are infrequent disorders in the pediatric population. The rupture of a bAVM is a clinical emergency often followed by death. Autism spectrum disorder shares a number of symptoms with AVM malformation; this may impede antemortem diagnosis.

International federation of genomic medicine databases using GA4GH standards.

We promote a shared vision and guide for how and when to federate genomic and health-related data sharing, enabling connections and insights across independent, secure databases. The GA4GH encourages a federated approach wherein data providers have the mandate and resources to share, but where data cannot move for legal or technical reasons. We recommend a federated approach to connect national genomics initiatives into a global network and precision medicine resource.

GA4GH: International policies and standards for data sharing across genomic research and healthcare.

The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity. In this perspective, we present the GA4GH strategies for addressing the major challenges of this data revolution.

Can Automated Vehicles Be Useful to Persons Living With Dementia? The Perspectives of Care Partners of People Living With Dementia.

Background And Objectives: Driving cessation is a complex challenge with significant emotional and health implications for people with dementia, which also affects their family care partners. Automated vehicles (AVs) could potentially be used to delay driving cessation and its adverse consequences for people with dementia and their care partners. Yet, no study to date has investigated whether care partners consider AVs to be potentially useful for people with dementia.