Suchergebnisse

A letter report issued by the General Accounting Office with an abstract that begins "Data sharing among federal agencies that run federal benefit and loan programs is important for determining the eligibility of applicants and beneficiaries. A GAO symposium on data sharing highlighted various issues facing federal agencies in their efforts to prevent abuse of federal programs. Symposium speakers focused on the number of program dollars saved by interagency data exchanges. Agencies using computer matching have detected undisclosed income and welfare recipients who receive benefits from more than one state. Improved technologies offer agencies the opportunity to expand their data sharing efforts. Such technologies include computer systems that can communicate directly with other systems and computer networks that can obtain information directly from financial institutions. Symposium speakers agreed that applicants' privacy should be protected when personal information is shared among agencies, but they disagreed about the extent to which data sharing threatens it. Privacy laws and security-related technology provide individuals with some protection against the possible misuse of personal information, but symposium participants differed on whether these protections are adequate."

Testimony issued by the Government Accountability Office with an abstract that begins "Since the onset of Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF), the Department of Defense (DOD) reported that more than 12,000 servicemembers have been injured in combat. While many return to active duty, others with more serious injuries are likely to be discharged from the military. To ensure the continuity of medical care and access to all other Department of Veterans Affairs' (VA) benefits, such as vocational rehabilitation, VA formed its Seamless Transition Task Force. In January 2005, GAO reported that VA had given high priority to OEF/OIF servicemembers, but faced challenges in identifying, locating, and following up with seriously injured servicemembers. GAO recommended that VA and DOD reach an agreement for VA to obtain systematic data from DOD, and the departments concurred. However, DOD raised privacy concerns. GAO was asked to review VA's efforts to expedite vocational rehabilitation services to seriously injured servicemembers and to determine the status of an agreement between DOD and VA to share health data. GAO relied on its prior work; interviewed VA and DOD officials; and reviewed the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the HIPAA Privacy Rule, which govern the sharing of individually identifiable health data."

Shane Tews and Sujit Raman explore how data flows worldwide as globalization challenges traditional privacy norms.
The post Privacy, Data, National Security, and the Principles for Data-Sharing Globalization: Highlights from My Conversation with Sujit Raman appeared first on American Enterprise Institute - AEI.

Abstract
This article enquires into the current prospects for data intermediaries in the context of competition and innovation policies. It asks what the conditions for and means to fulfil these promises are. This requires looking at the evolving legal framework – including the recently enacted Regulation (EU) 2022/686 'Data Governance Act', which affects the incentives of data intermediaries and market actors. In particular, this article explores the obstacles for the establishment of data intermediaries, the context for their activities and the necessary conditions to be set, and complimentary measures to be taken to make them work. The overall goal is to discuss how the findings would translate into viable policy options to advance the regulatory framework that would contribute to an effective market design for data sharing.**

Objectif : Décrire la position des revues chirurgicales sur le partage de données et explorer l'application du partage de données dans les essais contrôlés randomisés (ECR) issus des revues chirurgicales les plus influentes avant l'application de la directive de l'ICMJE. Méthodes : La première étude est un audit des politiques éditoriales des revues chirurgicales sur la promotion de la transparence de la recherche (le partage de données étant le critère de jugement principal) à travers leurs instructions aux auteurs officielles (IAO). Les critères d'éligibilité étaient un impact factor > 2, la présence d'instructions spécifiques pour la publication des ECR dans les IOA ou la publication d'au moins 1 ECR dans les 3 dernières années. Le critère de jugement principal était l'existence d'une politique de partage de données. La deuxième étude avait pour but de réaliser un état des lieux du partage de données dans les ECR issus des 10 principales revues chirurgicales avant la mise en place de la directive de l'ICMJE. Le critère de jugement principal était la disponibilité des données, définie comme la disponibilité de données et d'informations suffisantes pour réaliser une ré-analyse du critère de jugement principal. Résultats : Audit des revues chirurgicales : 82 revues avec un impact factor > 2 ont été analysées. L'impact factor moyen était de 2,98 [IQR = 2,48-3,77] et les revues avaient publié en 2016 et 2017 en moyenne 11,5 ECR [IQR = 5-20,75]. Les instructions relatives au partage des données étaient conformes à l'ICMJE dans quatre cas (4,88%), faibles dans 45,12% (n = 37) et inexistantes dans 50% (n = 41) des cas. La déclaration des conflits d'intérêts était obligatoire dans 77 revues (93,90%), l'utilisation des directives CONSORT pour reporter les essais dans 24 revues (29,27%) et l'enregistrement prospectif des essais cliniques dans 53 cas (64,63%). État des lieux sur le partage des données avant la directive de l'ICMJE : 65 essais ont été inclus. Aucun article ne mentionnait de déclaration de partage de données. Après prise de contact avec les auteurs correspondants, les données ont été obtenues pour seulement 2 études (3,07%). Conclusion : Ce travail a permis de constater que le nombre de revues chirurgicales aillant adoptées des instructions strictes sur le partage de données restent minoritaires. Au travers de l'analyse des ECR publiés avant l'application de la directive de l'ICMJE, ce travail a montré l'absence totale d'intention de partage des auteurs ayant publié des ECR dans les 10 revues chirurgicales les plus influentes et un taux de partage de données très faible. Il est urgent que les revues uniformisent leurs exigences de publication selon les directives de l'ICMJE pour que les pratiques de partage de données et plus largement de transparence se généralisent.

This article asks whether the necessity of many public services results in a readiness of individuals to share personal data, and thus sacrifice a certain level of privacy, in connection with their provision. It will explore the value of privacy in the context of the on-going debates around personal data sharing, with particular focus on the public sector in England, using the UK government's care.data project as an example. The impact on trust relations between the government, the National Health Service (NHS) and the citizen will be considered. The importance of anonymisation of personal data as a method of minimising privacy risks and increasing trust will be discussed. Using the results of the author's exploratory empirical study into attitudes to sharing personal data with the public sector, the article will suggest that the benefits-versus-costs privacy problem is particularly significant in relation to data sharing projects in the public sector. The lack of definitive answers in relation to the risk of re-identification contributes to the problem. Finally, the article will suggest that future work may wish to investigate how trust in, and acceptance of, data sharing initiatives could be improved by a bottom-up institution-led approach.

For the first time in Europe hundreds of rare disease (RD) experts team up to actively share and jointly analyse existing patient's data. Solve-RD is a Horizon 2020-supported EU flagship project bringing together >300 clinicians, scientists, and patient representatives of 51 sites from 15 countries. Solve-RD is built upon a core group of four European Reference Networks (ERNs; ERN-ITHACA, ERN-RND, ERN-Euro NMD, ERN-GENTURIS) which annually see more than 270,000 RD patients with respective pathologies. The main ambition is to solve unsolved rare diseases for which a molecular cause is not yet known. This is achieved through an innovative clinical research environment that introduces novel ways to organise expertise and data. Two major approaches are being pursued (i) massive data re-analysis of >19,000 unsolved rare disease patients and (ii) novel combined -omics approaches. The minimum requirement to be eligible for the analysis activities is an inconclusive exome that can be shared with controlled access. The first preliminary data re-analysis has already diagnosed 255 cases form 8393 exomes/genome datasets. This unprecedented degree of collaboration focused on sharing of data and expertise shall identify many new disease genes and enable diagnosis of many so far undiagnosed patients from all over Europe. ; The Solve-RD project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 779257. This research is supported (not financially) by four ERNs: (1) The ERN for Intellectual Disability, Telehealth and Congenital Anomalies (ERN-ITHACA)—Project ID No 869189; (2) The ERN on Rare Neurological Diseases (ERN-RND)—Project ID No 739510; (3) The ERN for Neuromuscular Diseases (ERN Euro-NMD)—Project ID No 870177; (4) The ERN on Genetic Tumour Risk Syndromes (ERN GENTURIS)—Project ID No 739547. The ERNs are co-funded by the European Union within the framework of the Third Health Programme.

Collaborative networks and data sharing initiatives are broadening the opportunities for the advancement of science. These initiatives offer greater transparency in science, with the opportunity for external research groups to reproduce, replicate, and extend research findings. Further, larger datasets offer the opportunity to identify homogeneous patterns within subgroups of individuals, where these patterns may be obscured by the heterogeneity of the neurobiological measure in smaller samples. However, data sharing and data pooling initiatives are not without their challenges, especially with new laws that may at first glance appear quite restrictive for open science initiatives. Interestingly, what is key to some of these new laws (i.e, the European Union's general data protection regulation) is that they provide greater control of data to those who "give" their data for research purposes. Thus, the most important element in data sharing is allowing the participants to make informed decisions about how they want their data to be used, and, within the law of the specific country, to follow the participants' wishes. This framework encompasses obtaining thorough informed consent and allowing the participant to determine the extent that they want their data shared, many of the ethical and legal obstacles are reduced to just monsters under the bed. In this manuscript we discuss the many options and obstacles for data sharing, from fully open, to federated learning, to fully closed. Importantly, we highlight the intersection of data sharing, privacy, and data ownership and highlight specific examples that we believe are informative to the neuroimaging community.

The paper examines the normative challenges of the Internet of Things (IoT), in particular, taking into account today's debate on privacy, data protection, and security issues brought about by IoT. Three different layers of complexity are under scrutiny. They regard (i) moral and political theories on the concept of 'security'; (ii) whether and to what extent information security technologies, in the context of IoT, may affect fundamental rights, such as privacy and data protection; and, (iii) new legal challenges for individual and group privacy and data protection. The overall aim of the paper is, on the one hand, to stress basic differences between privacy and data protection and why the distinction matters vis-à-vis the flow of information and data sharing on IoT. On the other hand, the intent is to stress the different meanings security has in this context, since the word is often used interchangeably to address information security, cybersecurity, or safety issues. We should take these distinctions firm, when striking balances between privacy, data protection, and 'security' on IoT.

Enterprises choose to keep their data on the cloud to allow for flexible and efficient data exchange among their authorized staff when dealing with huge data. However, during the sharing of sensitive data, data security and users privacy has become major challenges. Most of the existing studies have several limitations, including weak model security, single point of failure, and lack of efficiency during user revocation. This article proposes cloud storage based Hierarchical Multi-authority Access Control Scheme (HMA-ACS) for secure and efficient data sharing. Through theoretical analysis, this article proves that the proposed mechanism efficiently performs cryptographic key operations and secured plus adaptive in the standard model while supporting the access policies. Furthermore, the proposed approach evaluated and compared recent state-of-art schemes in terms of storage overhead, computation overhead, average encryption, and decryption performance. Experimental results analysis shows that the proposed solution is resistant to many types of security threats and ensures data privacy when sharing data in the cloud.