15,561 research outputs found

    Bands of the World - Brownsville High School Band snippet

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    Brief history of the Brownsville High School Band.https://scholarworks.utrgv.edu/renetorrespub/1010/thumbnail.jp

    Approaches to Carrier Testing and Results Disclosure in Translational Genomics Research

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    Background: Clinical genome and exome sequencing (CGES) is primarily used to address specific clinical concerns by detecting risk of future disease, clarifying diagnosis, or directing treatment. Additionally, CGES makes possible the disclosure of autosomal recessive and X-linked carrier results as additional secondary findings, and research about the impact of carrier results disclosure in this context is needed. Methods: Representatives from 11 projects in the clinical sequencing exploratory research (CSER) consortium collected data from their projects using a structured survey. The survey focused on project characteristics, which variants were offered and/or disclosed to participants as carrier results, methods for carrier results disclosure, and project?specific outcomes. We recorded quantitative responses and report descriptive statistics with the aim of describing the variability in approaches to disclosing carrier results in translational genomics research projects. Results: The proportion of participants with carrier results was related to the number of genes included, ranging from 3% (three genes) to 92% (4,600 genes). Between one and seven results were disclosed to those participants who received any positive result. Most projects offered participants choices about whether to receive some or all of the carrier results. There were a range of approaches to communicate results, and many projects used separate approaches for disclosing positive and negative results. Conclusion: Future translational genomics research projects will need to make decisions regarding whether and how to disclose carrier results. The CSER consortium experience identifies approaches that balance potential participant interest while limiting impact on project resources

    A Look into User Privacy and Third-Party Applications in Facebook

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    Purpose A huge amount of personal and sensitive data are shared on Facebook, which makes it a prime target for attackers. Adversaries can exploit third-party applications connected to a user’s Facebook profiles (i.e. Facebook apps) to gain access to this personal information. Users’ lack of knowledge and the varying privacy policies of these apps make them further vulnerable to information leakage. However, little has been done to identify mismatches between users’ perceptions and the privacy policies of Facebook apps. This paper aims to address this challenge in the work. Design/methodology/approach The authors conducted a lab study with 31 participants, where the authors received data on how they share information on Facebook, their Facebook-related security and privacy practices and their perceptions on the privacy aspects of 65 frequently-used Facebook apps in terms of data collection, sharing and deletion. The authors then compared participants’ perceptions with the privacy policy of each reported app. Participants also reported their expectations about the types of information that should not be collected or shared by any Facebook app. Findings The analysis reveals significant mismatches between users’ privacy perceptions and reality (i.e. privacy policies of Facebook apps), where the authors identified over-optimism not only in users’ perceptions of information collection but also in their self-efficacy in protecting their information in Facebook despite experiencing negative incidents in the past. Originality/value To the best of the knowledge, this is the first study on the gap between users’ privacy perceptions around Facebook apps and reality. The findings from this study offer direction for future research to address that gap through designing usable, effective and personalized privacy notices to help users to make informed decisions about using Facebook apps
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