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The Dagstuhl Perspectives Workshop "Online Privacy: Towards Informational Self-Determination on the Internet" (11061) has been held in February 6-11, 2011 at Schloss Dagstuhl. 30 participants from academia, public sector, and industry have identified the current status-of-the-art of and challenges for online privacy as well as derived recommendations for improving online privacy. Whereas the Dagstuhl Manifesto of this workshop concludes the results of the working groups and panel discussions, this article presents the talks of this workshop by their abstracts.
With ubiquitous use of digital camera devices, especially in mobile phones, privacy is no longer threatened by governments and companies only. The new technology creates a new threat by ordinary people, who now have the means to take and distribute pictures of one’s face at no risk and little cost in any situation in public and private spaces. Fast distribution via web based photo albums, online communities and web pages expose an individual’s private life to the public in unpreceeded ways. Social and legal measures are increasingly taken to deal with this problem. In practice however, they lack efficiency, as they are hard to enforce in practice. In this paper, we discuss a supportive infrastructure aiming for the distribution channel; as soon as the picture is publicly available, the exposed individual has a chance to find it and take proper action.
Der Nationale Aktionsplan für Menschen mit Seltenen Erkrankungen (SE) enthält 52 konkrete Maßnahmen, u. a. in den Handlungsfeldern Versorgung, Forschung, Diagnose und Informationsmanagement. Mit dem Ziel, langfristig die Qualität und Interoperabilität von nationalen Registern zu erhöhen, sieht Maßnahmenvorschlag 28 die Etablierung einer Strategiegruppe „Register für Seltene Erkrankungen“ vor. Diese Strategiegruppe hat 2016 ihre Arbeit aufgenommen. Sie berichtet hier über Entwicklungen auf nationaler und internationaler Ebene, um Empfehlungen für nationale Initiativen daraus abzuleiten.
Zusätzlich werden die Konsentierung und Implementierung sowie mit der Zeit ggf. die Anpassung eines Minimaldatensatzes zur Verwendung in Registern für Seltene Erkrankungen erläutert. Zusätzlich werden die verwendeten Datenelemente bzw. -schemata in einem sog. Metadata Repository abgebildet. Dieses Positionspapier wurde durch die Strategiegruppe sowie weitere Autoren erarbeitet und innerhalb der Gruppe konsentiert. Es wird als Konzeptpapier zum Aufbau und Betrieb von Registern der Strategiegruppe „Register“ veröffentlicht.
Enabling cybersecurity and protecting personal data are crucial challenges in the development and provision of digital service chains. Data and information are the key ingredients in the creation process of new digital services and products. While legal and technical problems are frequently discussed in academia, ethical issues of digital service chains and the commercialization of data are seldom investigated. Thus, based on outcomes of the Horizon2020 PANELFIT project, this work discusses current ethical issues related to cybersecurity. Utilizing expert workshops and encounters as well as a scientific literature review, ethical issues are mapped on individual steps of digital service chains. Not surprisingly, the results demonstrate that ethical challenges cannot be resolved in a general way, but need to be discussed individually and with respect to the ethical principles that are violated in the specific step of the service chain. Nevertheless, our results support practitioners by providing and discussing a list of ethical challenges to enable legally compliant as well as ethically acceptable solutions in the future.