This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section. The recent release of Genomical, an Australian data-sharing platform, is used as a case study to illustrate the type of assistance that can be provided to the health care sector in addressing this priority. The section first describes the National Framework and other drivers involved in the move towards genomic medicine. The section then examines key ethical, legal and social factors at play in genomics, with particular focus on privacy and consent. Finally, the section examines how Genomical is being used to help ensure that the move towards genomic medicine is ethically, legally and socially sound and that it optimises advances in both genomic and information technology.

BACKGROUND: Development and implementation of autonomous vehicle (AV) related regulations are necessary to ensure safe AV deployment and wide acceptance among all roadway users. Assessment of vulnerable roadway users\' perceptions on AV regulations could inform policymakers the development of appropriate AV regulations that facilitate the safety of diverse users in a multimodal transportation system.
METHODS: This research evaluated pedestrians\' and bicyclists\' perceptions on six AV regulations (i.e., capping AV speed limit, operating AV in manual mode in the sensitive areas, having both pilot and co-pilot while operating AVs, and three data-sharing regulations). In addition, pedestrians\' and bicyclists\' perceptions of testing AVs in public streets were evaluated. Statistical testing and modeling techniques were applied to accomplish the research objectives.
RESULTS: Compared to the other AV regulations assessed in this research, strong support for AV-related data sharing regulations was identified. Older respondents showed higher approval of AV testing on public roadways and less support for regulating AVs. AV technology familiarity and safe road sharing perceptions with AVs resulted in lower support for AV regulations.
CONCLUSIONS: Policymakers and AV technology developers could develop effective educational tools/resources to inform pedestrians and bicyclists about AV technology reliability and soften their stance, especially on AV regulations, which could delay technology development.
CONCLUSIONS: The findings of this research could be used to develop informed AV regulations and develop policies that could improve pedestrians\' and bicyclists\' attitudes/perceptions on regulating AVs and promoting AV technology deployments.

UNASSIGNED: We surveyed addiction journal editorial board members to better understand their opinions towards data-sharing.
UNASSIGNED: Survey items consisted of Likert-type (e.g., one to five scale), multiple-choice, and free-response questions. Journal websites were searched for names and email addresses. Emails were distributed using SurveyMonkey. Descriptive statistics were used to characterize the responses.
UNASSIGNED: We received 178 responses (of 1039; 17.1%). Of these, 174 individuals agreed to participate in our study (97.8%). Most respondents did not know whether their journal had a data-sharing policy. Board members \"somewhat agree\" that addiction journals should recommend but not require data-sharing for submitted manuscripts [M=4.09 (SD=0.06); 95% CI: 3.97-4.22]. Items with the highest perceived benefit ratings were \"secondary data use (e.g., meta-analysis)\" [M=3.44 (SD=0.06); 95% CI: 3.31-3.56] and \"increased transparency\" [M=3.29 (SD=0.07); 95% CI: 3.14-3.43]. Items perceived to be the greatest barrier to data-sharing included \"lack of metadata standards\" [M=3.21 (SD=0.08); 95% CI: 3.06-3.36], \"no incentive\" [M=3.43 (SD=0.07); 95% CI: 3.30-3.57], \"inadequate resources\" [M=3.53 (SD=0.05); 95% CI: 3.42-3.63], and \"protection of privacy\"[M=3.22 (SD=0.07); 95% CI: 3.07-3.36].
UNASSIGNED: Our results suggest addiction journal editorial board members believe data-sharing has a level of importance within the research community. However, most board members are unaware of their journals\' data-sharing policies, and most data-sharing should be recommended but not required. Future efforts aimed at better understanding common reservations and benefits towards data-sharing, as well as avenues to optimize data-sharing while minimizing potential risks, are warranted.

UNASSIGNED: Sharing data about patients between health and social care organisations and professionals, such as details of their medication, is essential to provide co-ordinated and person-centred care. While professionals can share data in a number of ways - for example, through shared electronic record systems or multidisciplinary team meetings - there are many factors that make sharing data across the health and social care boundary difficult. These include professional hierarchies, inaccessible electronic systems and concerns around confidentiality. Data-sharing is particularly important for the care of older people, as they are more likely to have multiple or long-term conditions; understanding is needed on how to enable effective data-sharing.
UNASSIGNED: To identify factors perceived as influencing effective data-sharing, including the successful adoption of interventions to improve data-sharing, between healthcare and social care organisations and professionals regarding the care of older people.
UNASSIGNED: MEDLINE and seven further databases were searched (in March 2023) for qualitative and mixed-methods studies. Relevant websites were searched and citation-chasing completed on included studies. Studies were included if they focused on older people, as defined by the study, and data-sharing, defined as the transfer of information between healthcare and social care organisations, or care professionals, regarding a patient, and were conducted in the United Kingdom. Purposive sampling was used to obtain a final set of studies which were analysed using framework synthesis. Quality appraisal was conducted using the Wallace checklist. Stakeholder and public and patient involvement groups were consulted throughout the project.
UNASSIGNED: Twenty-four studies were included; most scored highly on the quality appraisal checklist. Four main themes were identified. Within Goals, we found five purposes of data-sharing: joint (health and social care) assessment, integrated case management, transitions from hospital to home, for residents of care homes, and for palliative care. In Relationships, building interprofessional relationships, and therefore trust and respect, between professionals supported data-sharing, while the presence of professional prejudices and mistrust hindered it. Interorganisational Processes and procedures, such as a shared vision of care and operationalisation of formal agreements, for example data governance, supported data-sharing. Within Technology and infrastructure, the use of technology as a tool supported data-sharing, as did professionals\' awareness of the wider care system. There were also specific factors influencing data-sharing related to its purpose; for example, there was a lack of legal frameworks in the area of palliative care.
UNASSIGNED: Data-sharing was usually discussed in the context of wider initiatives, for example integrated care, which meant the information provided was often limited. The COVID-19 pandemic has had significant impacts on ways of working; none of our included studies were conducted during or since the pandemic.
UNASSIGNED: Our findings indicate the importance of building interprofessional relationships and ensuring that professionals are able to share data in multiple ways.
UNASSIGNED: Exploration of the impact of new technologies and ways of working adopted as a result of the COVID-19 pandemic on data-sharing is needed. Additionally, research should explore patient experience and the prevention of digital exclusion among health and social care professionals.
UNASSIGNED: The protocol was registered on PROSPERO CRD42023416621.
UNASSIGNED: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR135660), as part of a series of evidence syntheses under award NIHR130538, and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 12. See the NIHR Funding and Awards website for further award information.
Health and social care organisations and professionals need to share data about older people. Data – for example, details of medication – can be shared in different ways, for example electronic records systems, team meetings. Sharing data is important, especially for people with multiple or long-term conditions as they may need co-ordinated help from health and social care services. However, professionals often find it difficult to share data. For example, they may have concerns about confidentiality or may not have access to the same electronic record systems. This review investigated factors that influence data-sharing between health and social care. We found 24 studies that used methods such as focus groups or interviews. We found five main purposes of sharing data in the studies: to assess people’s need for health and social care to co-ordinate care for people with existing needs to help people move from hospital to home to care for people living in care homes to support end-of-life care. Factors that help health and social care professionals share data include: having trust and respect for each other having suitable policies and processes in place between their organisations having an awareness of why other professionals need data. New technologies can help professionals share data, but they need to be part of the normal way that people work. These findings could help to improve data-sharing as they show that professionals need multiple ways of sharing data. They also suggest more research is needed so that new technology supports data-sharing. Stakeholders – for example, doctors, social workers, and public and patient representatives – provided feedback throughout the project. The review contains studies published between 1995 and March 2023.

This paper presents a comprehensive overview of the National Sleep Research Resource (NSRR), a National Heart Lung and Blood Institute-supported repository developed to share data from clinical studies focused on the evaluation of sleep disorders. The NSRR addresses challenges presented by the heterogeneity of sleep-related data, leveraging innovative strategies to optimize the quality and accessibility of available datasets. It provides authorized users with secure centralized access to a large quantity of sleep-related data including polysomnography, actigraphy, demographics, patient-reported outcomes, and other data. In developing the NSRR, we have implemented data processing protocols that ensure de-identification and compliance with FAIR (Findable, Accessible, Interoperable, Reusable) principles. Heterogeneity stemming from intrinsic variation in the collection, annotation, definition, and interpretation of data has proven to be one of the primary obstacles to efficient sharing of datasets. Approaches employed by the NSRR to address this heterogeneity include (1) development of standardized sleep terminologies utilizing a compositional coding scheme, (2) specification of comprehensive metadata, (3) harmonization of commonly used variables, and (3) computational tools developed to standardize signal processing. We have also leveraged external resources to engineer a domain-specific approach to data harmonization. We describe the scope of data within the NSRR, its role in promoting sleep and circadian research through data sharing, and harmonization of large datasets and analytical tools. Finally, we identify opportunities for approaches for the field of sleep medicine to further support data standardization and sharing.

In the ever-evolving landscape of biomedical research and publishing, the International Committee of Medical Journal Editors recommendations serve as a critical framework for maintaining ethical standards. By providing a framework that adapts to technological advancements, the International Committee of Medical Journal Editors recommendations actively shape responsible and transparent practices, ensuring the integrity of scientific inquiry and fostering global collaboration in the ever-evolving landscape of medical publishing. This editorial delves into key aspects of the latest changes in the International Committee of Medical Journal Editors recommendations, focusing on authorship, conflict of interest disclosure, data sharing and reproducibility, medical publishing and carbon emissions, the use of artificial intelligence, and the challenges posed by predatory journals within the realm of open access. It emphasizes the importance of new recommendations, which represent a beacon of ethical guidance in the ever-evolving domain of biomedical research and publishing.

This article explores the privacy implications of the changing status of genomic data and the consequences for genomic data-sharing. It sets out the theoretical framework for privacy protection in Australia and the centrality of the concept of \"personal information\" - information from which an individual is \"reasonably identifiable\". It examines the applicability of this legal framework to genomic data and the challenge from the ever-growing risk of identifiability of such data and implications for research participation and researchers\' willingness to share genomic data. The article critiques the binary approach underpinning Australian privacy law based on whether data are \"identified\" or \"de-identified\" and highlights the difficulty of applying this distinction to genomic data given their changing status over time. It concludes by examining necessary reforms to provide individuals with more effective privacy protection over their genomic data and which would support data-sharing for genomic research.

Patient-gathered self-management data and shared decision-making are touted as the answer to improving an individual\'s health situation as well as collaboration between patients and their providers leading to more effective treatment plans. However, there is a gap between this ideal and reality - a lack of data-sharing technology. Here, we present the impact that the FullFlow System for sharing patient-gathered data during diabetes consultations, had on the patient-provider relationship and consultation discussion.

UNASSIGNED: Data-sharing plays an essential role in advancing scientific understanding. Here, we aim to identify the commonalities and differences in data-sharing policies endorsed by otolaryngology journals and to assess their adherence to the FAIR (findable, accessible, interoperable, reusable) principles.
UNASSIGNED: Data-sharing policies were searched for among 111 otolaryngology journals, as listed by Scimago Journal & Country Rank. Policy extraction of the top biomedical journals as ranked by Google Scholar metrics were used as a comparison. The FAIR principles for scientific data management and stewardship were used for the extraction framework. This occurred in a blind, masked, and independent fashion.
UNASSIGNED: Of the 111 ranked otolaryngology journals, 100 met inclusion criteria. Of those 100 journals, 79 provided data-sharing policies. There was a clear lack of standardization across policies, along with specific gaps in accessibility and reusability which need to be addressed. Seventy-two policies (of 79; 91%) designated that metadata should have globally unique and persistent identifiers. Seventy-one (of 79; 90%) policies specified that metadata should clearly include the identifier of the data they describe. Fifty-six policies (of 79; 71%) outlined that metadata should be richly described with a plurality of accurate and relevant attributes.
UNASSIGNED: Otolaryngology journals have varying data-sharing policies, and adherence to the FAIR principles appears to be moderate. This calls for increased data transparency, allowing for results to be reproduced, confirmed, and debated.

Data-sharing is increasingly encouraged or required by funders and journals. Data-sharing is more complicated for lifecourse studies that rely upon ongoing participation, but little is known about perspectives on data-sharing among participants of such studies. The aim of this qualitative study was to explore perspectives on data-sharing of participants in a birth cohort study.
Semi-structured interviews were conducted with 25 members of the Dunedin Multidisciplinary Health and Development Study when aged between 45 and 48 years. Interviews were led by the Director of the Dunedin Study and involved questions about different scenarios for data-sharing. The sample consisted of nine Dunedin Study members who are Māori (the Indigenous peoples of Aotearoa/New Zealand) and 16 who are non-Māori.
Principles of grounded theory were applied to develop a model of participant perspectives on data-sharing. The model consists of three factors that inform a core premise that a one-size-fits-all approach to data-sharing will not suffice in lifecourse research. Participants suggested that data-sharing decisions should depend on the cohort and might need to be declined if any one Dunedin Study member was opposed (factor 1). Participants also expressed a proven sense of trust in the researchers and raised concerns about loss of control once data have been shared (factor 2). Participants described a sense of balancing opportunities for public good against inappropriate uses of data, highlighting variability in perceived sensitivity of data, and thus a need to take this into account if sharing data (factor 3).
Communal considerations within cohorts, loss of control over shared data, and concerns about inappropriate uses of shared data need to be addressed through detailed informed consent before data-sharing occurs for lifecourse studies, particularly where this has not been established from the start of the study. Data-sharing may have implications for the retention of participants in these studies and thus may impact on the value of long-term sources of knowledge about health and development. Researchers, ethics committees, journal editors, research funders, and government policymakers need to consider participants\' views when balancing the proposed benefits of data-sharing against the potential risks and concerns of participants in lifecourse research.