21,462 research outputs found

    When is a lot still not enough? health information, the public good and privacy rights

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    Responsible Data Governance of Neuroscience Big Data

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    Open access article.Current discussions of the ethical aspects of big data are shaped by concerns regarding the social consequences of both the widespread adoption of machine learning and the ways in which biases in data can be replicated and perpetuated. We instead focus here on the ethical issues arising from the use of big data in international neuroscience collaborations. Neuroscience innovation relies upon neuroinformatics, large-scale data collection and analysis enabled by novel and emergent technologies. Each step of this work involves aspects of ethics, ranging from concerns for adherence to informed consent or animal protection principles and issues of data re-use at the stage of data collection, to data protection and privacy during data processing and analysis, and issues of attribution and intellectual property at the data-sharing and publication stages. Significant dilemmas and challenges with far-reaching implications are also inherent, including reconciling the ethical imperative for openness and validation with data protection compliance and considering future innovation trajectories or the potential for misuse of research results. Furthermore, these issues are subject to local interpretations within different ethical cultures applying diverse legal systems emphasising different aspects. Neuroscience big data require a concerted approach to research across boundaries, wherein ethical aspects are integrated within a transparent, dialogical data governance process. We address this by developing the concept of “responsible data governance,” applying the principles of Responsible Research and Innovation (RRI) to the challenges presented by the governance of neuroscience big data in the Human Brain Project (HBP)

    A Qualitative Study of Communication between Young Women with Disorders of Sex Development and Health Professionals

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    Background and Objectives. Health communication is a critical aspect of care for both providers and recipients having a direct influence on engagement and outcomes. Communicating which in this context includes talking and listening in order to share information or support young women to understand their DSD can be difficult especially since the topic area is sensitive. Methods. In this qualitative study thirteen young women (aged 14–19 years) with a disorder of sex development who engaged with health care professionals were purposively recruited between 2011 and 2012 from three specialist centres across the United Kingdom. The young women either were interviewed or completed a diary about their experiences of communication with a range of health care professionals. An interpretative phenomenological approach was used to analyse these data. Results. By analysis of data the young women were able to clearly articulate the qualities and skills health professional needed in relation to communication. Two main categories focused on the duty in which professionals have to share information and their role in supporting young women to manage this information. Discussion and Conclusion.The study results revealed that these young women with a DSD expected to meet skilled professionals who could recognise the emotional aspects of dialogues in the short and longer term

    A National Dialogue on Health Information Technology and Privacy

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    Increasingly, government leaders recognize that solving the complex problems facing America today will require more than simply keeping citizens informed. Meeting challenges like rising health care costs, climate change and energy independence requires increased level of collaboration. Traditionally, government agencies have operated in silos -- separated not only from citizens, but from each other, as well. Nevertheless, some have begun to reach across and outside of government to access the collective brainpower of organizations, stakeholders and individuals.The National Dialogue on Health Information Technology and Privacy was one such initiative. It was conceived by leaders in government who sought to demonstrate that it is not only possible, but beneficial and economical, to engage openly and broadly on an issue that is both national in scope and deeply relevant to the everyday lives of citizens. The results of this first-of-its-kind online event are captured in this report, together with important lessons learned along the way.This report served as a call to action. On his first full day in office, President Obama put government on notice that this new, more collaborative model can no longer be confined to the efforts of early adopters. He called upon every executive department and agency to "harness new technology" and make government "transparent, participatory, and collaborative." Government is quickly transitioning to a new generation of managers and leaders, for whom online collaboration is not a new frontier but a fact of everyday life. We owe it to them -- and the citizens we serve -- to recognize and embrace the myriad tools available to fulfill the promise of good government in the 21st Century.Key FindingsThe Panel recommended that the Administration give stakeholders the opportunity to further participate in the discussion of heath IT and privacy through broader outreach and by helping the public to understand the value of a person-centered view of healthcare information technology

    Social Media in the Dental School Environment, Part A: Benefits, Challenges, and Recommendations for Use

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    Social media consist of powerful tools that impact not only communication but relationships among people, thus posing an inherent challenge to the traditional standards of who we are as dental educators and what we can expect of each other. This article examines how the world of social media has changed dental education. Its goal is to outline the complex issues that social media use presents for academic dental institutions and to examine these issues from personal, professional, and legal perspectives. After providing an update on social media, the article considers the advantages and risks associated with the use of social media at the interpersonal, professional, and institutional levels. Policies and legal issues of which academic dental institutions need to be aware from a compliance perspective are examined, along with considerations and resources needed to develop effective social media policies. The challenge facing dental educators is how to capitalize on the benefits that social media offer, while minimizing risks and complying with the various forms of legal constraint

    Notice and Consent in a World of Big Data

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    Nowadays individuals are often presented with long and complex privacy notices routinely written by lawyers for lawyers, and are then requested to either ‘consent’ or abandon the use of the desired service. The over-use of notice and consent presents increasing challenges in an age of ‘Big Data’. These phenomena are receiving attention particularly in the context of the current review of the OECD Privacy Guidelines. In 2012 Microsoft sponsored an initiative designed to engage leading regulators, industry executives, public interest advocates, and academic experts in frank discussions about the role of individual control and notice and consent in data protection today, and alternative models for providing better protection for both information privacy and valuable data flows in the emerging world of Big Data and cloud computing

    Social Media in the Dental School Environment, Part B: Curricular Considerations

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    The goal of this article is to describe the broad curricular constructs surrounding teaching and learning about social media in dental education. This analysis takes into account timing, development, and assessment of the knowledge, skills, attitudes, and behaviors needed to effectively use social media tools as a contemporary dentist. Three developmental stages in a student’s path to becoming a competent professional are described: from undergraduate to dental student, from the classroom and preclinical simulation laboratory to the clinical setting, and from dental student to licensed practitioner. Considerations for developing the dental curriculum and suggestions for effective instruction at each stage are offered. In all three stages in the future dentist’s evolution, faculty members need to educate students about appropriate professional uses of social media. Faculty members should provide instruction on the beneficial aspects of this communication medium and help students recognize the potential pitfalls associated with its use. The authors provide guidelines for customizing instruction to complement each stage of development, recognizing that careful timing is not only important for optimal learning but can prevent inappropriate use of social media as students are introduced to novel situations

    Made in the USA? The influence of the US on the EU's data protection regime. CEPS Liberty and Security, November 2009

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    Recent developments have shown that the EU’s border security policy is greatly influenced by the US. This influence simultaneously has implications for other EU policies, including those on data protection. This paper highlights that policy-making at the transatlantic level is increasingly taking place through informal networks, such as the High-Level Political Dialogue on Border and Transportation Security and the High-Level Contact Group on data protection, which allow US involvement in EU policy-making. This tendency stems from the growing personal relationships among policy-makers, the gradual substitution of formal instruments with less formal contracts and informal understandings shaping the content of formal agreements. Drawing from empirical examples of EU–US cooperation on data protection in the context of homeland security, the paper analyses the repercussions of these developments and the issues that remain unresolved, and offers policy recommendations

    How to design browser security and privacy alerts

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    Browser security and privacy alerts must be designed to ensure they are of value to the end-user, and communicate risks efficiently. We performed a systematic literature review, producing a list of guidelines from the research. Papers were analysed quantitatively and qualitatively to formulate a comprehensive set of guidelines. Our findings seek to provide developers and designers with guidance as to how to construct security and privacy alerts. We conclude by providing an alert template, highlighting its adherence to the derived guidelines

    The promotion of data sharing in pharmacoepidemiology

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    This article addresses the role of pharmacoepidemiology in patient safety and the crucial role of data sharing in ensuring that such activities occur. Against the backdrop of proposed reforms of European data protection legislation, it considers whether the current legislative landscape adequately facilitates this essential data sharing. It is argued that rather than maximising and promoting the benefits of such activities by facilitating data sharing, current and proposed legislative landscapes hamper these vital activities. The article posits that current and proposed data protection approaches to pharmacoepidemiology — and more broadly, re-uses of data — should be reoriented towards enabling these important safety enhancing activities. Two potential solutions are offered: 1) a dedicated working party on data reuse for health research and 2) the introduction of new, dedicated legislation
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